Alexander's Blog

Wednesday, October 28, 2009 - Happy Birthday Alex!

2009-10-28T08:22:00.003-06:00

Today would have been Alex's 7th birthday but my thoughts are more on the day I met our beautiful boy. A massive snow storm was heading towards Denver and the maternity ward at Rose was so full that the doctor decided to postpone my induction. Supposedly foul weather and births are highly correlated! My family was in town to throw a baby shower and I really wanted my mom and sister at the birth. So when I went to bed that Sunday night, I was very disappointed that there were no plans for me to go to the hospital the next day, since my family would be departing in the morning. Well, that all changed when a headache set in and I called the doctor. Since my blood pressure had been elevated recently, I was told to "come on in". After that it really becomes a blur. There was the hideous epidural, then the French nurse telling me to "poosh, poosh!" Then there was Alex, pointy head and all! He was absolutely beautiful and my heart grew as soon as I met him. He was healthy and happy and I had to get out of the birthing room to make way for the next mother to be. Steve bathed our boy and we all met back in a hospital room. Alex latched on easily and I knew I had found my true calling, to be a mother. It all made sense. Of course, a mother. That is what I had been waiting for, the purpose of my life, the meaning of my life, the joy of my life! I wept happy tears of anticipation for the family we had become. The massive snow storm that developed did not fail to keep my mother and sister from making it to the hospital that day. We all knew that the snow would be a significant part of the tale of Alex's birthday, too. We did not know that it would also be a part of his departure. You see, the day we said "good-bye" to our baby, it snowed as well. I remember exiting the chapel and crossing the street in a wonderful white haze. The snow was falling and as our balloons raised our prayers to the sky, we all appreciated the beauty of the moment. So on this snowy, snowy day. I think of Alex in every snowflake, absolute perfection, that allows us to stop and take some time to cuddle with our loved ones and enjoy some special moments. Alex wants us all to find our happiness and he is offering you a snowy day to reflect, bond and find peace. Happy Birthday Alex! We love and miss you more than words can say. My heart aches today, but it also knows that you are not gone, merely transformed. Thank you for being such an inspiration to me and all that know you. God bless! G

Monday, October 26th - My thoughts . . .

2009-10-26T09:07:00.004-06:00

Good Morning, I was told yesterday that I am due a run of good luck. That I should go buy a lottery ticket. My response was "maybe I have won the lottery and just can't see it". I said this because I want to stop waiting for "some event" to be happy. I want to be happy with today, now, this body, this car, this job, this life! I want to honor Alex with every breath. To be the person, wife, mother - he and Zoe can be proud of. I want to know my power and use it for good. I want to feel my emotions but not succumb to them. I work towards these goals every day. Some days I feel successful and some days I don't but those days are fewer and fewer. Alex's birthday is in 2 days. I was trying to explain to Zoe what a birthday is because she did not understand how Alex could have a birthday since "he's not here". I said, "a birthday is the day you are born, the day you come out of your mommy's tummy." She asked me, "Will Alex come out of my body (remember she thinks of Alex as being in her heart)?" I said, "no". She then asked if he would come out of my body. I said "no". I think I may have confused her more than anything, but I really want her to understand as much as she can. She likes to talk about Alex and process her emotions with us. Steve wants to watch the home videos we took when Alex was with us. I don't think we have ever watched them. Unfortunately, Zoe is out of school that day and I (as well as her therapist) don't believe she should be a part of the first viewing. I am pretty sure it would be very disconcerting for her to see Steve and I so upset. So I don't really know how we will spend Wednesday. I do know there will be tears and if I can get away with it some primal screams! I would like to ask all of you who know Alex, to take a moment to remember his smile and his spirit. If he knew you, he loved you and his beauty was a reflection of the beauty inside all of us. He is your angel too and he wants you to be happy, fulfilled, complete. Just take a moment to say, "hello" to your power, wisdom and glory. Then feel the smile Alex puts in your heart. God Bless, G

Wednesday, October 14, 2009 - Another Alex Moment

2009-10-14T06:59:00.002-06:00

Hi All,

So I want to share a very special "Alex Moment" we experienced this past weekend. If you follow me on Facebook, then you know I was having a hard day-missing Alex a few weeks ago. By dinner time, I just wanted to feel warm, enveloped and eat some comfort food. As I was trying to explain this need to Steve, Macaroni Grill came to mind so we were off. Zoe decided to bring along one of two rocks Steve and I purchased on our honeymoon last year at the petrified forest. These are really cool rocks. They are shaped like eggs-white, smooth and when you hold them you can see a rainbow kinda glow from the inside of the rock. We call them our rainbow eggs and if you have followed this blog for any length of time then you know Alex's connection to rainbows.

Okay so all through dinner, Z is playing with this rock and occasionally drops it on the floor of our booth. I decide to put it in the small shopping bag she was carrying it in and set it aside. We all had a very nice dinner, while reflecting on all of the past dinners we shared with Alex, friends and family at this Macaroni Grill. So when we left, I was sure the rainbow rock was with us but somehow when we got home it was not in the bag. I was very distraught but resigned myself to "it ain't nothing but a thing" mentality. But my heart ached everytime I glanced at the crystal dish that used to be home to the two rainbow rocks, that now was half empty.

So last Saturday, I was working at my desk when I noticed that the crystal dish was now occupied by BOTH rainbow rocks! I was amazed and ecstatic. I showed Zoe and said to her "I bet your brother brought this rock back to us". To which, she replied " I bet Alex tiptoed out of my heart and put the rock here, then went right back in!" I enthusiastically agreed with her and we went to tell Steve.

I asked him if he had put the 2nd rock in the dish and he said "no". Once again, I had the feeling that Alex was making his presence in our lives obvious to us, just in case we had forgotten that he was always with us.

Well, that was my goose-flesh moment of the month. Alex's 7th birthday is coming up on the 28th and I have already started feeling the new pain this date brings. The 1st birthday after his passing seems like a haze but this one seems so solid and overwhelming, real if that makes any sense. I will never get to see his big boy smile, hear his 7 year old laugh, see my children share another birthday party. The pain is so immense. Alex is and always will be with me. I just wish I could hug him, see him and give him a sweet kiss.

Okay, well it is time to get Zoe up and ready for school. Thanks for checking back with me. I hope you are well and that you can pull a favorite Alex memory out of your mind to honor our special boy.

Love,

G

Friday, August 14th-2/3's of a day from HELL!! The Recap. cont'd.

2009-08-15T17:24:00.003-06:00

So I called Jenny back but she was not to be found. We decided I would shower while Steve processed the data points. During my shower, Steve came in and said "we have some decisions to make." He had spoken to Jenny and we were offered a neurological consult with Foreman that could perhaps negate the need for the MRI. As you can probably guess, I was not having any part of that. No offense to Dr. Foreman, but we need the peace of mind the scan would provide. Steve told Jenny that and she would call back to let us know if his consult was a prerequisite for the scan. Luckily (for them!) it was not. I spoke to Jenny later that afternoon and asked her to talk to Foreman and convey to him that we need him to take this seriously, to really give the scan some consideration because "this is not fun for us!" She heard me and told me that he was taking it seriously but the chances were so slight for Zoe to have a brain tumor. I told her that that information was of ABSOLUTELY no comfort to us whatsoever. We discussed details when we could expect to hear from Foreman and she ended the call by saying "I wish I had a valium for you or something!"

So since we had promised Zoe a new fish tank, we decided to distract her from her hunger (and ours) by heading to PetsMart around noonish. We spent time in PM looking at the aquariums and decor items, fish and birds. Zoe pointed out "Fluff" to us. He is her bird friend (imaginary) and was very beautiful. So we purchased our stuff and headed out on a long drive so Z could get in a nap before we arrived at the hospital.

So Zoe falls asleep within 10 minutes and once Steve got on the main highway to the hospital, my mind started FREAKING OUT. I was so, so scared. Steve and I talked about how hideous the flashbacks were and how worried we were for Zoe and her mental well-being before, during and after this ordeal. I cried and would have screamed if I could have. By the time we arrived at the hospital, Zoe was waking up and I had regained my composure. At the check-in counter we were told to have a seat on a couch in the airport-esque lobby. Since I had already gone through the check in process the day before, I asked if she needed my confirmation number to which she replied, "it just says for you to have a seat on that couch". So we did. Steve and Zoe went to view the ball machine and a lady came up to me and asked "what's the patient's name?" I told her and then I realized what she had said and went to talk to her and the woman behind the computer. I firmly told them to NOT say patient again around my daughter. "I am serious." They both agreed and looked at me like I had snakes in my hair. So we were then told to go to radiology across the lobby.

Upon arriving in radiology, I had to complete the same forms I have filled out for every one of Alex's MRI's and it was NOT fun!" I then went to go sit with Steve and Zoe. I tried to read a magazine, but absolutely could not concentrate on the words. I realized that my laptop was also not going to be a good distraction. Luckily about that time, our beautiful neighbor, Courtney showed up and we immediately headed out of radiology to look at the construction and to go to the gift shop. Since we had a pager this was not a problem.

Zoe ended up getting a lovely stuffed horse from the gift shop and I bought a scarf. Nothing like retail therapy. When we returned we saw Steve sitting just outside radiology. I asked him why he moved and he said "someone brought food in and sat it out right in front of our former location". I'm sure if they had known that there were kids that had not eaten since 8a that morning they would have been more considerate but nonetheless, we moved.

Next, I spent alot of time talking with our nurse, Erin, to explain words she could and could not say around Zoe. I also told her that we were telling Z that she was there for a shot and we did not want her to see any MRI machines. Erin then explained that there would be gas done on the MRI table and then she would receive the general anesthesia via IV. So that through a monkey wrench into our set up and we had to talk to Z about the mask. The next issue was the anesthesiologist himself, I had told Erin that we did not want to answer their questions in front of Zoe and here he comes, just comes into the room and starts asking questions. I ask him if we can talk outside and he accommodates my request, but only halfheartedly. He tells me they "HAVE" to ask us at the MRI door what procedure we are here for AGAIN, as a safeguard for Zoe. He suggests that STeve and I split up and answer this question, to which I agree. We are then asked if we want an oral med to make Zoe sleepy and loopy. We agreed since it would also act as a mind eraser of the events to come. So in all, Zoe had 3 anesthesia yesterday: oral, gas and IV.

Okay, so the oral med takes effect and time is ticking. Our 3:45pm MRI was not happening at 4:20 pm and Dr. Foreman only had until 6p to read the scan before departing for an out of town conference. So FINALLY, we get Zoe outside the MRI room and here we go again! Another nurse, starts asking me "so we are here today for a . . ." to which I immediately start shushing her! She was not going to be shushed and I had to just interrupt her and say "YES, we are here for a B-R-A-I-N scan". GEEZ!!! What a pain!

Okay, so we head straight to the cafeteria to grab some lunch (at 4:30pm) and not three bites into it, our pager starts to go off. A brain MRI takes 30 to 45 minutes and my heart immediately sped up. I grabbed my stuff, told Steve and Courtney "this is not good!" and nearly ran back to Radiology. Once there, no one was inside the patient lobby to meet us and a nurse leaving had to call and find out why our pager was going off. She explained that "it was a mistake". Again, GEEZ! (just to keep this post family friendly, we'll use geez instead of my actual words!) So after our hearts returned to normal, we tried to eat our lunches/snacks.

About 5p, we were paged to come back to see Z. She was OUT! The nurse took out her IV hoping that the process would wake her up but it did not. So I asked Steve to go get our stuff and Courtney from the lobby. I had left my phone in the lobby and wanted to have it to speak to Foreman when he called. Steve was gone for a very long time and time was passing so I went to find him. He was in the lobby and had been locked out. So I got my phone and sure enough, I had missed the call from Foreman. So I can't call voicemail fast enough as we are walking back down the halls to Zoe. Finally, I hear these words spoken in a very tired, English voice "Zoe's scan is clear". I told Steve and Courtney and hung up the phone. I guess I pressed "erase" instead of "save" because I never got to hear the rest of that message. It did not matter, I just wanted to get the F out of that place. We tried again to wake Zoe but she was not having any part of it. Finally about 30 minutes later, Zoe wakes up and we head home. We have milk and snacks for Zoe and the nurse gave her some animal crackers that she would not share on the ride. We then took Zoe to her preschool's first "Parents night out" of the summer. Zoe was still too wobbly to walk so I had to put her on a blanket in the backyard with some of the other kids. It took me about 15 minutes to get out of there after cutting off her bracelet and reassuring her that she would be okay. It was Shannon's tale of ice cream and glow sticks that finally convinced Zoe she wanted to stay. So I joined Steve in the car.

We headed straight home. Steve needed a nap and I needed a beer. I made some phone calls and then woke Steve up after an hour or so. We then headed to our neighborhood Sushi place and had a wonderful dinner. I asked Steve "what's next, dancing?" and he said he had a surprise for us. We were headed to Inspiration Point!

If you have not been to our town's Inspiration Point, you need to go. Don't even think about getting some some there though. There are video cameras everywhere and they make sure you know so! We were there for the views and the walk anyway. On our walk, we saw our city from many new vantage points. It was a lovely, clear summer evening and truly lovely. We both were completely flabbergasted that in the 8 years we have lived here, neither of us had ever noticed the 3 or 4 story tall, bright phallic symbol in our view. It was VERY phallic if you get what I mean, and it was lit up with alternating orange and blue pulsating lights. I swear I have seen smaller versions in certain stores! After a hearty laugh, we decided it was part of the children's area at our neighborhood amusement park! Just makes you wonder, what else have we been missing both in our landscapes and our lifescapes!

Thank you and God bless!

G

Friday, August 14th-2/3's of a day from HELL!! The Recap.

2009-08-15T10:58:00.002-06:00

So I just have to get this down before I forget the details of yesterday. I woke up at 7a and no one else was awake. I went downstairs to wake Steve after making the coffee. I made a stop at the "facilities" before going to wake Zoe and I hear Steve "NO WAY, FU**, FU**!!" I'm mortified and come out saying "What, What, What is it!". Steve's response "We have NO EGGS!" I knew at that moment Steve was needing to be pissed at SOMETHING! So to de-escalate the problem (you see we promised Zoe a big pancake breakfast because her first and only meal until evening would need to be eaten by 7:30am, and we wanted it to be big), I responded "Oh well, we can do waffles." Since it was 7:16am I thought that would work. But Steve's glare was very intense and I felt his displeasure. He glared at me as he made his way out of the kitchen and downstairs. I went to wake Zoe and I got her to the breakfast bar. I asked her if she wanted waffles or cereal and she chose waffles, so I started to prepare them. As I was doing this, I looked inside the Bisquik box and saw some dark spots. Upon investigati0n, it turned out the mix had weebles so I threw it out. Next thing I know, Steve is walking through the front door with a carton of eggs. My heart sank to have to tell him about the weebleful Bisquik and his glare returned quickly! So we finished breakfast and I asked Zoe if she wanted to go to Kidz Club at the gym with me? She put her finger on her chin and looked to the sky and said, "well, maybe I want to . . . GO TO KIDS CLUB!!! I laughed of course and we proceeded to get to the gym.

After a great workout, the instructor, Angela came up to me after I had retrieved Zoe from the Kidz club room and asked "are you okay, you seem a little down today?" I told her to speak to Joshua or Chris to get the details but told her it has to do with Zoe so I can't speak about it here. She agreed and I followed Zoe out of the building. As we headed to the car, I looked over the parking lot to our new liquor store. I considered going to get the beer now or later. I decided to take the "green" option and we just walked across the parking lot into the liquor store. Now you have to know that I really like this new liquor store, but I have been quite vocal about "not being happy" when they run out of Sam Adams Light Beer 12 packs and then sell out of the 6 packs by Saturday afternoons. So I see the gentleman, that usually gets the brunt of my discourse as I walked in the door and said across the store (since we were the only ones there at 10am) "Am I happy?" We both then looked to the beer cases and I saw it there, glowing like a beacon, a 12 pack of SA Light!!! I WAS HAPPY, IT WAS GOING TO BE A GOOD DAY!!! As I ran to the precious box, I saw my 2nd favorite beer of the summer, Oskar Blues Brewery's "Mama's Little Yella Pill" so I grabbed a six pack of it too. We paid for our purchase and I filled out a form to get on their email list then Zoe and I walked back across the parking lot which was filling up with the yoga class crowd carrying my treasure proudly and boldly! I was ready if anyone wanted to say something to me!! Just BRING IT ON! I had my "Steve" mode all planned out!

So we get home and there is a message on the home phone. It is Jenny M. from Dr. Foreman's office (Alex's pediatric, neuro-oncologist) saying that "Dr. Foreman wants to see Zoe at 2p today and to call her back asap and that she will call me back too." So I played the message for Steve who was in the garage building Zoe's new bed. We both experienced a spike in anxiety and despair. I think we cried and I know we hypothesized "why would he want to see Zoe?" I told Steve there was NO WAY Zoe was going to see him. Primarily because she remembers Dr. Foreman, he is like a croc wearing Ringo Star but smarter. He is a distinctive character!

Okay, I have to take a break. We are going to go purchase a bike "tag a long" for Zoe. More later!

G

Z is OK!!

2009-08-14T17:27:00.000-06:00

Thursday, August 13th - Zoe has an MRI tomorrow

2009-08-13T17:14:00.002-06:00

Hi All,

So Zoe had her first occupational therapy appointment on Tuesday. At the end, the OT asked me "have you noticed her head tick and tilt to the left?" At which time, my heart sank and my guts spilled onto the floor. If you recall, one of Alex's presenting symptoms was a "head tilt to the left". After I asked her to be sure and she was. I asked her what I should do and she said to "have it looked at as soon as possible." So I came home and emailed our pediatrician, Dr. Jody. She called me back and said she would see Zoe this morning for a "check up" and schedule an MRI for today. Well, of course, no one contacts us all day yesterday about any MRI so later that evening we found out it would need to be on Friday. So we all were at the ped's office at 8a this morning and Zoe has grown 3/4 of an inch since May and her eyesight is the same. Other than that, the doc did not see anything and Zoe would not complete the dexterity tests like, touching her nose then the doctor's moving finger. Jody did say that "OT's are so much better at seeing these things" and the we would go ahead with the MRI for everyone's peace of mind. So she called and it is scheduled for 3:45pm MST tomorrow.

Yesterday was a day spent battling fear, logic, anxiety and did I say FEAR!!!!! Luckily Zoe was able to go to her friend's house for the day and Steve and I had time to talk, cry, strategize, pray, cry and plan. I have been asked "is there a tilt" and I say "yes" there is and Steve says "no" and Dr. Jody only saw it at the end of the visit. I am trying so hard to put my powers to good and think positively but PLEASE do not tell me "the odds are in your favor" because that is ABSOLUTELY of no comfort to me! So, I have been to the gym, drank a few beers and held my baby tight and worried myself almost sick.

Tomorrow, Zoe will not be able to eat after 7:30am. I will be at the gym at 9a and we will be at TCH at 2:30p for the scan. We have no plans to tell Zoe much tonight. Tomorrow it will be that we have to go to the hospital and she will get a shot (can't say "poke" because that was Alex's term.) I have to keep reminding myself of that.

So I have members of my tribe showing up tonight and if you are part of that group, you are welcome too! Pray, PRAY and PRAY again!! My wish is that tomorrow we are all free of this all too well known anxiety and excruciating fear.

God bless!

G

Alex, please dear boy, look after your baby sister tomorrow and give her peace. We love you and ache for your smile.

Zoe Grace - A Kid's Kid, August 7, 2009

2009-08-07T07:16:00.003-06:00

As much as I wish Alex were alive and well, I wish you could know Zoe Grace. She is an absolutely amazing child. Every week, I hear "what an imagination" or "what a beauty". People just have to comment when they experience the ZG. She has a wonderful energy and her imagination is AWESOME! So far we have met Lucky, her horse, Fluff, her bird, and Bolt, her dog. I wish I could remember the name of her "inside" chipmunk. Zoe makes friends wherever she goes and has been likened to "Max" from the classic tale "Where the Wild Things Are" which Steve and I agree is a very good way to describe Z.

Zoe still misses her brother, as do we all. And there are times when I can feel Alex's absence in Zoe's playtimes. It is heartbreaking to even think about what she has missed out on. To put it in perspective, I was told "You have to remember, Zoe picked this life so don't pity her, rejoice in her." Someday, maybe we will all understand. But as I have said before, there is no answer to the question "why?" that would be satisfactory so therefore there is no "Why?"

Okay, so back to the living. We have had a busy summer and I am not ready for Fall. I was in a JoAnne Fabrics at the end of July and was absolutely taken aback to see the employees putting out Halloween decor. It truly struck me to the core. "I'm not ready, NO, NO, NO!!!" I swear I won't return to any hobby, fabric, home stores for a while.

I have used the summer to improve myself and hopefully build up stores of energy, wisdom, and strength to enter the Fall and Winter seasons. I am still working out and losing weight. I am physically stronger, more fit and have more endurance and stamina than ever before in my life. Quite a feat at 43 years of age. I am addicted to the endorphins and if you don't have them in your life, I STRONGLY encourage you to go get some! Endorphins make everything better, even the bereavement of a child like Alexander. It took me a year of intermittent working out to get them but WHOA when they become a part of your life, you are truly LIVING!!

So here are some pics of ZG. I hope you enjoy them and enjoy the last month or so of summer. You will never get this moment back again, so make it worth your while.

Much love and God bless,

G

Pictures from Gwendolyn

2009-06-12T10:37:00.001-06:00

Click here to view these pictures larger

Wednesday, May 20, 2009 - Soccer Mom

2009-05-20T12:04:00.002-06:00

Hi All,

So every since I told you about my website, I have been petrified and absolutely no work has been done on the site since. I'm still working through this issue so bear with me.

I wanted to let you all know that Zoe will be playing soccer for the first time today with a new group in the hood. I will officially be a "soccer mom" as of 1p today. Whoo Hoo!!

Also, I can happily report that I have lost 27 (not a type-o, has been verified) pounds!!! WHOO HOO!! I feel so much better about my body and my life. I have been dieting since I was 12 years old and only intermittently added exercise to the diet for better results. Let me tell you, working the weight off is so much easier than dieting! I hate dieting and LOVE working out! I am one person that needs her endorphines!

Okay, well, just a quick update. Gotta go to soccer practice.

Much love and have a wonderful holiday weekend.

G

Monday, April 27 2009 - Oh the Internet

2009-04-27T14:00:00.002-06:00

Hi all,

I am trying to navigate my way into a new career here. I am working very hard to start writing and somehow get paid for it. They say you should do what you love and as you can tell, I do enjoy sharing with you. My new venture will be up and running soon, so stay tuned!

I have to say getting away was good. First we visited my family for Easter. That was very nice and a good time was had by all. Zoe got a new kitten. I thought the name was Lucy, but have since learned that it is Loosy Goosy. So be sure you get that right! She is a sweet, low maintenance kitten and we love her very much.

After the trip home, I flew to St. Louis to attend a wedding. While there I saw some dear, long-time ( hate to use the word "old") friends and made some new ones too. It was so great to be out and about and social. I realized Saturday night how pathetic and lonely my new life is when the best thing I could think of to do was the mass of towels and linen laundry at our local laundromat. We have a washer and dryer. I just wanted to get it all done within hours instead of days. Now that is sad! I have to make an effort to get out more!

Okay, back to it. Hope your day is a good one and that you enjoy it even it is not.

G

Yesterday, we all set up the layout for Alex's tribute garden. This has been years in the making and I know it will get planted this year. I have some pics for you too.

Please send your prayers . . .

2009-04-07T22:39:00.002-06:00

Click here to see the clip from the evening news about two baby girls and the agonizing ordeal this twist of fate has created in so many lives.

Please send your prayers to these little ladies and their families, doctors, and communities.

God bless,

G

Tuesday, April 7, 2009 - Tuesdsy, Aoril 7, 2009

2009-04-07T07:30:00.003-06:00

Good Morning,

Well an emotional breakdown (I cried long and hard Thursday) has been followed by a physical one. Since Sunday, I have been ill with a stomach flu. I woke on Sunday at 5:30 a.m. to get on the road, but I-70 was closed due to poor driving conditions. Soon thereafter the illness made itself known and I was not going anywhere. Yesterday morning was not much better, so I cancelled the first portion of our trip and plan to leave tomorrow morning.

I want to thank everyone for the kind and supportive words and even the not so kind and not so supportive ones as well. I feel compelled to explain my "intent" when I posted the last entry. I thought long and hard about whether to put such personal and private information on the world wide web. If you have followed this blog for any time, you know I am brutally honest about my life. I really don't know the value of "softening the blow" for the general public. My intent was only to share the experiences of my life over the last few weeks. I was completely OVERWHELMED and needed a release. Writing this blog is one of my means of release and reading the comments is another. I was not trying to solicit sympathy at all. Support, yes! Sympathy, NO! Nor was I trying to "blame" anyone for anything. As we all know, a marriage is made of two persons.

I am neither embarrassed nor ashamed of my posts. Honesty is necessary when seeking change and that is where I am at now. I am in uncharted territory right now and as many Americans, am very uncertain about my future. As we all know, it is only by circumstance, and the Grace of God, that we are not that homeless person on the corner that we can't look in the eyes. I consider myself a strong person, who has had a life full of experience, good and bad. When Alex was dying, we were supported by friends, family and AFLAC. I still have friends and family, but I often feel like a burden on my friends and family with all of this intensity. More than one has written to me to "move on/get it over with". That type of advice is neither helpful nor supportive. It only reinforces to me that they are sick of hearing about me and the issues in my life. So that is another reason, I seek out you, the anonymous-yet-supportive, circle of friends I have here. I also want to thank Karen E., for her understanding, diplomacy and support. Thank you, Karen!

I also need to make a correction. I have lost 14 pounds, not 27. When I weighed at home after a shower, my scale showed a 17 lb loss (I hit a 2 instead of a 1, on that last post). At the gym, the scale weighed me a pound more than the home scale and 2 more pounds were added by my shoes. So 14 pounds are gone but many more are to come!

I hope each and every one of you have a pleasant holiday. God Bless.

G

A Note from Steve

2009-04-07T07:29:00.000-06:00

My dear friends,

This is only the 2nd time I've chosen to comment on Gwen's blog but know that over the years I derived much comfort, solace and even words of wisdom from your thoughts and words. Truly Alex's death drew together a strong community of caring souls. I thank you for that.

Now that Gwen and I are in the middle of something common to 75% of all marriages having experienced a child's death due to brain tumor, I hope that your words of encouragement for Gwen her on this blog continue. It is and should remain a source of strength. But please remember that the words written on this blog represent at the most half of an amazing complex and tragic story; not all. Those of you who know the story or truly know me that the events unfolding now do not result from caprice or whimsy or even vanity. I am now morning the loss of my son. There are a few out there who can relate but for the rest, before making comment I want you to put yourself in my shoes.

I want to thank the commenter above for offering comment and advice on a subject of obvious concern and passion. I only wish that they had not used the blanket of anonymity in making such strong statements. Those who truly know and love me understand that I am always willing to hear criticisms and opposing views. Those who truly know and love me, especially a friend, would know not to be afraid to talk to me directly, rather than through the open medium of the blogsphere.

Please, I ask you to use this space in support of my wife, the positives that have built up over the years should not become poisoned by the vitriol of misplaced virtue. If you have something to say to me, say it directly, not here.

Kindest and warmest regards,

Steve

March 17, 2009 - St. Patrick's Day

2009-03-17T08:14:00.003-06:00

Good Morning,

Well, last Tuesday, Steve moved into the apartment downstairs. Within one hour I completely "girlified" the bedroom and really love it. I have Oprah magazines on the bedside table and candles and flowers in the room. It makes me smile.

Steve and I are still able to stay light and generally cordial. He went out of town Saturday night to visit a friend for the evening and returned Sunday morning. Unfortunately I can't trust any of his words, so I was invited to get upset about this. Instead, Zoe and I went for a walk and had a very nice fire in our outdoor fireplace that evening. I still have to fight the negative feelings but only for minutes not hours now.

The best part of my world right now centers around personal training. The gym is offering an incredible deal. If I complete 20 pt sessions in the two months ending April 30th, then I get 10 pt sessions free! I'm using part of the tax return to fund this endeavor and so far I have only missed one day at the gym since Friday. Joshua, my trainer, decided this morning to make me his "member of the month". Which means we are now in a competition to with other trainers/clients to have the "best results" at the end of the month and win some prize. I think he said a dinner at McCormick's. I'm not so excited about getting food for working out but we'll see. I do have a competitive streak in me and that is great motivation.

I have to say that I am really changing, this time for the good. I would rather be moving than not, and my energy level has increased and the endorphines are wonderful!!! I love them! I am finally ready to let go of this "weight that I have been carrying around for so long." I am ready to be free! It just feels wonderful to be in this mindset.

I also joined Weight Watchers Online yesterday to help me track my food intake. So far so good! I would like to find a meeting run by a great leader. That is usually easier said than done, but I will give it a try.

The down side is that I have not sent out any resumes in the past two weeks. I am not motivated to find a full time gig doing bookkeeping. I just don't love accounting! I'm not too stressed by this, because I feel that I am on a path that will lead me to a good place one way or the other. Red House Staging is starting work in this city and I have asked to be a part of the staging/design team. It would just be wonderful to be able to move and be creative at work instead of sitting in front of a computer all day. At Kabbalah Experience, the month end accounting has been delegated to an outside person who is actually redoing all of the books since last day one. I am so excited that their books will be clean and to be free of that task. There is just not enough time in my 10 hour work week to fix the books. Instead I am doing more administrative, marketing work; which I prefer. I will also begin my 2nd class, Time, next week. It is a perk of the job too!

So you can see why I am not too stressed. Joshua says that if I don't control my stress all of this working out and food diligence will be for not. Stress can completely derail all of this hard work, so I need to focus on that too.

So I have attached a movie of Zoe reading a letter she found. She was just too adorable and I am so happy to share this with you. I hope you enjoy it.

So this Saturday night, it is my turn to go out and about. I have some great plans with Lisa. I can't wait!

Okay, Jillian, thank you for the note. If you would like to send me an email at fightthebump@comcast.net, we can correspond that way.

Thanks so much to you all. I know your thoughts and prayers are a huge part of my well-being.

Happy St. Patty's day!

G

Sunday, March 8, 2009 - Zoe!

2009-03-08T10:05:00.004-06:00

Hi All,

I have been wanting to write a post on ZG. I know you are all probably very concerned about our precious little girl. Well, I am happy to report that Zoe is thriving and doing quite well. She has even become quite the little chatter box! As you may recall, we took Z out of school last November. The classroom transition was very stressful for Zoe and Steve and I thought it best to relieve Zoe from this stress for a time. The winter months were worrisome. Zoe was picking up on all of the "seasonal cues" and was pretty somber throughout the winter time. Well, the weather has turned unseasonably warm lately and Zoe has emerged as her old, gregarious self! She loves to do art and is quite the tempermental artiste! She has thrown her work away when it was "not good enough" for us to see it and also created an art gallery for some of her favorites.

Zoe started going to a nannyshare a couple of days a week and so far loves it. She has become great friends with the five-year-old boy in one nannyshare (surprise, surprise)! And prefers to direct the "cleaning up" portion of the day rather than assist. (I have no idea where she gets that!)

Zoe is an animal, specifically dog, FANATIC!!! She could play with dogs all day long. She loves to get in the dog crate, give the dogs check ups, and just romp around with them. It is great! We are somewhat concerned about the withdrawal she will experience when Noni leaves with the dogs on Tuesday, but we'll deal with that.

Zoe is currently playing tee ball and soccer. We are hoping to get her onto a team so she can really learn theses sports! Zoe loves to go the "kids club" at the gym with me and to fly on the swings like a bird.

We are allowing Zoe to do as much "regression" as she likes at this time. She loves to be held like a baby and given her bottle (water sippy cup). While this nourishes Zoe, it also nourishes me. She is slowly doing more without her pacifier than she is with it. Every doctor says she is fine and her teeth are fine as well. I personally don't like to see Z with a pacifier, but her therapist says it is "how she keeps me with her at all times"; so I deal with it.

Zoe has tried to learn how to ride her brother's bike with training wheels, but since the trike we had is broken, does not have the act of peddling quite yet. We hope to get her a trike/bike for her birthday. Z is quite excited about her upcoming birthday! She has given me a list of friends she wants to come to her party. It is long!!! So we'll see what we can make happen.

Well, I can't write everything that is wonderful about Zoe but those are the highlights! Zoe has asked me to "come to the big bed" (I'm currently sleeping in her room) with her and her dad. She does not understand why I say "no thank you". I'm sure she will do some more regression once Steve moves downstairs as well. Her therapists has suggested that we start reading age-appropriate books about separation and divorce to Z. I hope to go the library early next week to review the selections.

I have attached some recent photos of Zoe for your viewing pleasure. Enjoy!

Much love, God bless!

G

PS-After three months of personal training, I am proud to announce that I have lost 8 pounds and several inches. Whoo Hoo!!!! Yeah ME!!!

Friday, March 6, 2009 - One Year Ago . . .

2009-03-06T12:54:00.002-07:00

Wow, one year ago, Steve and I were one week away from our honeymoon in Northern California. What a difference a year makes.

I want to share an email I just received. It was a true gift! Thank you!

You can't read this and stay in a totally bad mood!

1. How Do You Catch a Unique Rabbit?
>Unique Up On It.
2. How Do You Catch a Tame Rabbit?
> Tame Way
3. How Do Crazy People Go Through The Forest ?
> They Take The Psycho Path
4. How Do You Get Holy Water?
> You Boil The Hell Out Of It
5. What Do Fish Say When They Hit a Concrete Wall?
> Dam!
6. What Do Eskimos Get From Sitting On The Ice too Long?
> Polaroid's
7. What Do You Call a Boomerang That Doesn't work?
> A Stick
8. What Do You Call Cheese That Isn't Yours?
> Nacho Cheese.
9. What Do You Call Santa's Helpers?
> Subordinate Clauses.
10. What Do You Call Four Bullfighters In Quicksand?
> Quattro Sinko. (think about it... uno, dos, tres)
11. What Do You Get From a Pampered Cow?
> Spoiled Milk.
12. What Do You Get When You Cross a Snowman With a Vampire?
> Frostbite.
13. What Lies At The Bottom Of The Ocean And Twitches?
> A NervousWreck.
14. What's The Difference Between Roast Beef And Pea Soup?
> Anyone Can Roast Beef.
15. Where Do You Find a Dog With No Legs?
> Right Where You Left Him.
16. Why Do Gorillas Have Big Nostrils?
> Because They Have Big Fingers .
17. Why Don't Blind People Like To Sky Dive?
> Because It Scares The Dog.
18. What Kind Of Coffee Was Served On The Titanic?
> Sanka
19. What Is The Difference Between a Harley And a Hoover?
> The location of the Dirt Bag
20. Why Did Pilgrims' Pants Always Fall Down?
> Because They Wore Their Belt Buckle On Their Hat.
21. What's The Difference Between a Bad Golfer And a Bad Skydiver?
> A Bad Golfer Goes, Whack, Dang!
> A Bad Skydiver Goes Dang! Whack ..
22. How Are a Texas Tornado And a Tennessee Divorce The Same?
> Somebody's Gonna Lose A Trailer
Now, admit it. At least one of these made you smile

Here is an excerpt from my reply.
I am having many more smiles these days. I appreciate your kind and gentle words.
Steve will be moving downstairs when his mom leaves on Tuesday. We are currently in the setting boundaries phase. Unfortunately, not much about this situation is ideal except for the slightest possibility I may get my own bathroom!!!!

Also, for Jillian, "wanna be my facebook friend?

Thank you all. Have a good evening.

G

Friday, February 27, 2009 - Ask and Ye Shall Receive

2009-02-27T08:15:00.002-07:00

Good Morning. I just want to thank the person that posted that last comment. I have always said that the comments on this blog are soooo much better than what I write. It has taken me several days to understand the first sentence but I think I have some comprehension of what was intended. Second of all, for the last three days I have been down and out with a fever and head congestion, so I could not "hold onto" all of those negative feelings. There was just not enough energy to be angry, hurt, or fearful. I was just ill. So, I have to say the break was worth it. Now, I am trying to figure out how to proceed. Action items are always best in situations like these. So I am searching for work and just trying to get my head around what will be on the other side of this tunnel. I really have no idea, but who does? So, today I just want to experience the day. Share some time with Zoe and recoup my strength.

Thank you, thank you, thank you. I know your positive thoughts and prayers have had an incredible impact on my well-being.

Have a great weekend! God bless.

G

Wednseday, February 25, 2009- This is Changing Me.

2009-02-25T07:48:00.002-07:00

So I realized last night that I am changing at my very core. In order to facilitate change, I feel compelled to hold on to anger, mistrust, anxiety and fear. It is very exhausting staying in such a negative space and it is not my nature to absorb such negative states. I know if I let go that things will just move back to there "usual" which is why we are here now. So what do I do? Does divorce/separation usually change the parties involved into angrier, mistrusting souls? I have worked so hard at living a good life and being a good person, inside and out that this is causing me great distress. My body is even feeling the stress and is ill, again.

If you know how I can continue to stay motivated for a better life without losing myself, I would love to hear from you.

God bless.

G

Thursday, February 19, 2009 - Another Day

2009-02-19T14:32:00.003-07:00

Hi all. Thank you for the kind and supportive words and prayers. We all need them right now. I met with my tribe of incredible women last night and got some great hugs, good advice and action items. My anxiety right now concerns Zoe and her ability to cope with another dramatic change to her family.

God bless.

G

Tuesday, February 17, 2009 - A Darkness Falls

2009-02-17T09:55:00.002-07:00

Morning again,

So an evil is creeping into my soul. I have desires to do despicable, mean things. Things that I know are wrong and will cause much turmoil in many lives. This blow has hit me harder than Alex's passing.

I can't bear to think of the raw deal Zoe has been given during her short time here so far. I only pray that somehow she will be okay. I can't answer the question "who will take care of Zoe while you take care of you?" I need help.

I called the divorce attorney today. I have been advised to not make any final decisions for a while, so that is what I plan to do. I just feel so betrayed and physically beaten up. My body is falling apart and I have no idea how to handle this phase so far.

G

Monday, February 16, 2009 - Another Bomb Has Dropped

2009-02-16T08:52:00.002-07:00

I really don't how much to tell you so there is enough privacy to work through this for all involved but Steve and I are not doing well. I can't fix anyone but myself and that is what I plan to try to continue. I have no idea what life will look like at the end of this either. I'm pretty sure our home will have to be sacrificed. My main concern is who will take care of Zoe while I take care of myself. Thank you all for continuing on this journey with me. Here we go again!

G

Saturday, January 24, 2009 - Hugs from Alex!!

2009-01-24T16:41:00.003-07:00

This just happened and I am absolutely tingling!! Here's the background: 1) Zoe tore off the border wallpaper in her room while crying and saying "I can't take it anymore; I don't want these people staring at me!!"
2) Dad, Zoe, and Mom all spent a weekend in the smallest room in our house taking wallpaper off the walls while riding one of the most amazing emotional roller coaster rides of the year!
3) Mom makes a "storyboard" of Zoe's Room with items from Ikea's website. The total for "new ensemble" is $220; which has to be budgeted for and we had planned to ask for contributions from family for Z's birthday to complete.
3)The painting process has been done in phases over two weeks.
4)Steve and I just took a break so the 1st coat of paint could dry on 2 of Z's walls.
5)I went out to check the mail and two checks from TCH, refunding overpayments on Alex's account; have arrived totaling $192.76. They are from charges from 12/28/2006 and 9/2/07!
6)Mom starts crying because Alex is such an incredible big brother!!! He loves his sister so and I can feel his love around me and filling my soul. I swear I am glowing!! Zoe is sleeping but I can not wait to wake up and tell her! She will be so excited!! And we'll go shopping online! I also want to tell you another tidbit. I attended a school tour Friday and posted pics on a shutterfly site I recently created. As I was perusing around the site I found 15 albums of pictures I have created since Alex was an infant! I was so happy to see these pictures! Let me know if you want the link. I also used some of these pics to create a Valentine's Day card that I am so excited about! Much Love! G

January 13, 2009 - "Life is not for pussies!"

2009-01-13T13:43:00.004-07:00

Welcome to 2009. This is the first week on my new work schedule and I must say I am loving it! This morning Zoe and I made a snowman and have gone sledding! I've attached a photo of the snowman for you to see.

I have not written lately because the holidays were pretty tough and I did not want to bring everyone down. The reality of our existence without Alex is setting in and the shock (thank God for shock) is wearing off. I know that sounds strange but it really is true. Let me just give you an example of how "reality is settling in".

Last Thursday as the Sooners were losing ANOTHER championship game, we heard Zoe crying in the nursery. I went in to find her tearing off the wallpaper border and crying "I can't take it anymore. I don't want these people staring at me when I sleep!" The border, if you have not seen it, is a color version of the blue and white toile wallpaper on the upper portion of her walls. Both depict various nursery tales such as Humpty Dumpty, Little Bo Peep, Jack and Jill, etc. Zoe had never said anything about the people staring at her but I can't tell you the last time she actually slept in the nursery. So, the next morning (after asking 10 thousand times) we went to Lowe's to get some paint. Zoe picked out a beautiful green color and the majority of our weekend was spent peeling the wallpaper that Steve put up in preparation for Alex's arrival in October 2002. This wallpaper took me an entire pregnancy to decide upon, even though it was my first choice. And we have really enjoyed the nursery's various furniture re-arrangements over the past six years. The emotional journey Steve, Zoe and I have taken over the past weekend has been very intense. Zoe has been especially discombobulated seeing the room in disrepair. She's ready to paint but the paper just got completely removed yesterday and today I have washed the walls. Next will be repairing the walls, then drying, then painting. Zoe also wants a new bed so we are trying to find something for her. Let me know if you have any nice, little girl furniture lying around. We plan to move the full size bed (converted from the crib frame) downstairs to the guest quarters. So soon the nursery will be transformed into Zoe's room! It will be a great day (and night for mom and dad) once this project is completed!

So, another reality is the fact that Steve and I will not be meeting any more of our natural born children (in this lifetime at least). The reality of my age plus the task of nurturing Zoe (and perhaps an adopted child) to adulthood means that this dream must go. I think any woman that has come to the realization that she will not have anymore children can understand the grief that surfaces.

So I have to tell you about our Valentine's Day Tree. I don't know if you remember the torment cutting down a tree (City ordered it) in our front median caused Zoe. We told Zoe the tree was sick (sometimes we even said "dead") and had to be cut down. STUPID, STUPID, STUPID!! So Zoe made the association that when something is sick/dead you get rid of it (like her brother) and she did not like that idea!!! So when it came time to take down the xmas tree, Zoe became VERY upset and begged us not to get rid of it. Nonetheless, I continued to remove decorations. While I was doing so, I commented to Steve how amazingly fresh the tree still was. We bought this tree on December 4th and the tree was still quite supple and fresh. Steve then had the brilliant idea of creating a Valentine's Day tree; so we did! I told Zoe the plan and asked her to go around the house looking for hearts or red, pink, white toys, etc. Next thing I know she has put all of her red, barrel of monkeys, monkeys on the tree! It was perfect! We pulled out some old V day cards and some other items and wah-lah a Valentine's tree! I highly recommend that everyone decorate for Valentine's day. It helps the transition from the Christmas holidays to Easter/Springtime. Just don't tell Zoe about the Valentine's day tree fairy that comes in and leaves chocolates but takes your tree!

So I'm going to post some pics for you all. Zoe has taken up photography and any pics you see of our pets have been taken by her. I love the perspective she has shared with us in her pics. It truly does reveal what the world looks like to her. I hope you enjoy the pics!

Take care of yourselves and God bless.

December 3, 2008 - 1 day to 1st Deathday

2008-12-03T11:00:00.003-07:00

Morning, I apologize for not writing. So much is going on these days. We decided to keep Zoe home instead of sending her to school for a while. After much deliberation, it was the best decision for Zoe and our family. We will miss all of our friends at the school but I hope to keep in touch. Zoe seems to love being home. She just had a house full over the Thanksgiving holiday. Steve's sister and her family came in and stayed for almost a week. The boys, though 9.5 years old, really took to Zoe (again) and they had a great time. Zoe is working on become a great artiste! She loves to paint and does it with such deliberation and intensity. The works are actually very interesting and quite colorful. I'll try to post some later. So tomorrow is the 1st deathday. I received an email yesterday and the author said that it must be hard since his birthday is approaching (just a mistype, I'm sure). But that got me thinking, tomorrow is like a birthday, but not. So I have called it a deathday. Steve may prefer passingday, but it is what it is no matter what you call it. My body has become very ill and I have a mild flu thing going on (thank God for flu shots). I think it is quite appropriate that I am physically ill at a time when I am invited to be mentally devastated. This past year has been a blur. I really do not want to remember the events of one year ago tomorrow, but they keep creeping into my conscious. So I have started a mantra, it is a meditation taught in the Kabbalah class. It is Dlayt Atar Pauni Meenay (pronounced d-late, a-tar, panooee, manet (like Monet, but the "a" sound). It means "there is no place empty of you" or "God is everywhere". It has really helped for some reason. I love saying these words softly, they follow your breath and just come naturally to my being. Feel free to try it! Tomorrow, I hope to sit with an "Angel's Influence" candle given to me by dear friends that practice meditation and repeat these words. Alex has been making himself very present lately. He loves to play with the light in our bedroom that is a "stained glass" bulb and usually kept on most of the time. It also shines on a collage of pictures made for his Memorial service last year. He turns it on and off whenever I pass and I love to feel his presence. I think it is his way of telling me, I am here, I am Light, I will always fill your world! Okay, that was deep. I hope you feel Alex's light in your life. He was so precious and a such a gift to this reality. God bless! G

November 13, 2008 - Parallels

2008-11-13T18:10:00.004-07:00

So things have been uhhh, interesting, lately. Let's start with last night. I had this intense, vivid dream where I, Gwen, (not Gwendolyn, not mom, not Mrs. Kasnoff) moved into a house with a few of my high school friends. (I have reached many friends from HS via Facebook and am loving it). Any way, a party ensued at this shared home. Rob Thomas, musician from Matchbox Twenty (who sings our song "Smooth") was hell bent on OD'ing on crystal meth. Many things happened at this party but it's true meaning came out when I told Steve about it this morning. During my description I said "I was just so upset that I was living in a house where someone had died." Read that again, just to get the full effect.

In addition to that, my subconscious is playing tricks on me. Let's just say it kept me from going someplace that I really wanted to go by creating a diversion to a similar location.

On top of all of this, we feel that taking Zoe out of school for a year might be the best thing for her. It seems pretty apparent that Z needs some attention that only a Mom (supported by Nonnie) can provide. This transition will not only benefit Zoe but me as well. You see, trying to teach someone else how to handle your child's emotional and developmental needs is more stressful than just doing it yourself (or that is what I'm thinking right now).

So Linda/Nonnie knitted a sweater for Zoe and when she finished, Zoe said "Okay, Nonnie now make Alex a sweater!" Linda agreed and my first thought was "oh no". But the next day, we spoke to Z's play therapist about the sweater and she thought it was a great idea. She said this is Zoe's way of saying "I want Alex included in my life" and that to have something tangible would be very useful to Zoe. Zoe is too young and developmentally not able to understand "angel brother". So this is her way of processing Alex's loss. As the therapist said, it offers us the opportunity to ask, "What shall we do with Alex's sweater?" and "Where will we keep Alex's sweater?" So send us all your prayers for successful trials!

So December 4 is coming too soon. I wish I could just disappear. I remember hearing it said that "you won't remember the first year." At the time I thought, "I'll never forget this, how could I?" but now that we are over eleven months into it, I think that they may be right. My mind is just too overwhelmed with emotion to recall many events of the past year. If you ask me about almost any day the year prior to Alex's passing though, I think I could give more details than you could imagine. Let's just say, I'm a different person every day with different wants, likes, dislikes, aspirations, plans, etc. I'm all over the place these days and it is a wonder I still have a head! Poor Steve!

So please forgive me if this is disjointed entry. I had to write it in several sessions through the night.

I'm exhausted. More later.

God bless.
G

October 28, 2008 - Happy Birthday Alex

2008-10-28T08:03:00.003-06:00

A sister's laughter
A cousin's companion
An aunt's awe
An uncle's heart
A neighbor's gift
A grandparent's joy
A friend's playmate
A stranger's smile
A father's pride
A mother's love

Alex, you are so special to so many people.
We all miss you and your incredible, unstoppable smile.
Today is a day we promise to remember your unique and very precious spirit.
We are all blessed to know you.
Happy Birthday my boy, my love, my heart.
Happy Birthday Alex!

October 26, 2008 - My Tattoo!!

2008-10-26T08:27:00.002-06:00

Hi All,

So I finally did it. I got my tattoo. I love it so. It makes me smile every time I look at it. Alex drew this picture of himself when he was about 2.5 years old. It was part of a beautiful Christmas card. My favorite part is the little penis he included! He was proud to be a boy!

Have a great day!

G

Tuesday, October 21, 2008 - Hard Day

2008-10-21T15:06:00.002-06:00

Hi all,

So today is a very hard day for me. It started out just fine, but then I thought about the fact that Alex's birthday is just one week away. The thought that we are not all excited about his upcoming birthday party and celebration just makes my heart want to scream. I should be out buying gifts, sending out Evites and checking it twice, getting Alex and Z ready for Halloween. Yet, that won't happen this year. My boy will never turn six years old. There will be no birthday party with tons of kids running around laughing with Alex. Alex will never be a grown, beautiful man. We'll never attend his graduation or his wedding. We'll never so many things.

It is just so unfair!!! It hurts too much.

Sometimes I wonder if I'll make it through this pain that invites me to fall into unknown depths of agony. Some days are better than others at avoiding the dungeon of hell that is my pain without Alex. Others, like today, are not those better days. A storm is brewing and it matches my inner turmoil. The thunder you hear is my inner angst fighting with my sense of survival. I'm sure there will be lightening and perhaps a tornado or two!

G

October 12, 2008 - Conversations to Remember

2008-10-12T10:33:00.003-06:00

Hi all,

So the last week has been an interesting one. On Thursday, I participated in a panel discussion, "End of Life Nursing Eduction Course: Pediatric Palliative Care ELNEC-PPC" at The Children's Hospital. I was crying during the introductions. There were four children represented at this panel discussion with about 20 nurses in attendance. Two of the presenters, worked in Oncology at TCH. One was a nurse and the other was an administrative type (not really sure). The Oncology nurse / parent, chose this line of work after losing her 18 year old daughter to cancer. I thought that was too cool! Anyway, the panel discussion ended with this question posed to all panelist, "What did your child teach you?"

I had to think about this and if I had had time, would probably had a different response, but I said, "Alex taught me so many lessons, too many to list here, but one of the important ones is to appreciate the minutia in our lives; the simple, overlooked joys that exist in every moment."

BTW, I would like to hear your answer to this question as well. Please share!

So when I got home, I was ready for some wine! About half an hour later, Steve and I ended up in the back yard with our neighbor, Kevin. If you attended Alex's service, then you may remember Kevin. He talked about how Alex and God had their own calendar and that Alex did something every one of us from great politicians to you and me wish we could do, made an impression on everyone he met (and some he never met!).

Anyway, so we are outside enjoying a wonderfully beautiful fall sunset and I posed the question to Steve and Kevin. Kevin said, "Alex proved to me, beyond a shadow of a doubt, that there really is Spirit, something more than the physical reality." Steve agreed and posed this question, "Was Alex's spirit so bright, because he knew he only had a short amount of time to shine?" I disagreed with this. Personally, I think Alex's beautiful spirit would have continued (and does continue) to be as bright as ever. I even said that all children are born with this bright spirit and it is the soul's interaction and reaction to life - parenting, social mores, education, experiences, and life lessons- that either keeps that brightness alive or diminishes it over time. I think Steve and I disagree on this point. Anyway it was a great conversation to have and I wanted to share it with you.

So I also want to record/share a conversation Zoe and I had last night.

Z-"Mommy, where's Alex? He is supposed to be here, coloring with me."
G-"I know Zoe, that would be wonderful. But he does not have a body."
Z-"Alex is in the rainbows, and the mountains and the sunshine and the rain."
G-"Yes you are right."
Z-"But I want Alex here. I miss him so much. I just want my brother."
G-"I know baby, I want Alex here too. It is very sad that Alex is not here to paint with you right now."
Z-"Alex loves me very much. I love him too."
G-"Yes, Zoe, Alex is your angel brother and he loves you very much."

I have posted a pic of Zoe's new do!! Isn't she just adorable?!! We got her hair cut Friday because she won't let me brush it and it is torture for me to get tangles out and listen to her scream bloody murder. So this is our compromise!

Okay, so that is it. We are anxiously awaiting Nonni's arrival on the 22nd! We've got a ton of prep work before she gets here, so don't be surprised if you don't hear from me for a while!

Have a wonderful day!
G

October 5, 2008 - Choices, Poor Wretch, Choices!

2008-10-07T07:19:00.002-06:00

So I can officially recommend berry picking in the mountains as a cure to gut wrenching angst. Mostly because it leads to berry pie later in the day!!!!

Steve and I had a good conversation Saturday morning on our way to the berry farm. Just for the record, I am not a fan of my own words coming back out of my spouse's mouth but in this case it was for the best. Anyway, he made the point that Alex would not want us to be hating the season of his birth, or the colors of his joy and spirit. So it is our duty to him to overcome our sadness and grief and live this life as we would with him, since he really is still "with us".

So I felt Alex's beauty while surrounded by the berry bushes under the clear blue skies with the wondrous mountains in the background and Zoe running around in pure joy of the simple life.

I can't say that all is well yet. But I am trying very hard to make better choices. One choice I have made is to re-read Elizabeth Gilbert's "Eat, Pray, Love". Last night I rediscovered this passage and want to share it with you. I believe it is a direct response to my prior post.

"The Yogis, however, say that human discontentment is a simple case of mistaken identity. We're miserable because we think that we are mere individuals, alone with our fears and flaws and resentments and mortality. We wrongly believe that our limited little egos constitute our whole entire nature. We have failed to recognize our deeper divine character. We don't realize that, somewhere within us all, there does exist a supreme Self who is eternally at peace. That supreme Self is our true identity, universal and divine. Before you realize this truth, say the Yogis, you will always be in despair a notion nicely expressed in this exasperated line from the Greek stoic philosopher Epictetus: "You bear God within you, poor wretch, and know it not."

I think I will end on that note.

Have a wonderful day!

G

October 4, 2008 - Something's wrong?

2008-10-04T05:18:00.003-06:00

Hi all,

So this past week has been tumultuous to say the least. I think everyone feels it, but my gut really feels it. I just want the new President of the United States elected already so we can move forward. The VP debate and the bailout bill have turned me into a MSNBC and NPR junkie. I can't get enough information about what will happen next. BTW, I love Rachel Maddow's show on MSNBC. If you have not seen her yet, please check it out. She is a funny, smart commentator and says what I wish I had said!

So I have been up since 4:28 am. I can't sleep. I have so much to tell you all but really can't remember any of it now. Since my last post, I have joined Facebook (please look me up, I would love to meet you!!) and love it. I have reconnected with some dear long lost friends. One is from and lives in Denmark. Hi Annette!!! Another one is my college friend, Mike. Mike and I spent ALOT of time together. He was my best friend and we truly loved one another. I am so excited to have him back in my life. Unfortunately, he was not aware I was a mom or of Alex's journey. So telling the story of my last 10 years has been gut wrenching. Literally, my gut is in knots and I can feel it churning.

Also, I had lunch with two dear friends this week. It was good to get out of my normal routine and just have an hour to myself, for myself and my friends. I think part of my current discomfort is due to the fact that I feel as if I am "falling away from the lessons of the past." Does that make sense or did I use way too many words in that last sentence?

Yesterday, we had a conference with Zoe's teachers. Zoe had some real difficulty at the beginning of the Fall semester when one of her favorite teachers became "sick" and was absent for two weeks. Zoe does not do well with the word "sick" and really had a serious regression. The classroom became a scary place for her and she was spending time in the hall, by herself. Needless to say, that won't ever happen again at this school. The lead teacher had some great insights and questions for Steve and I. I had to ask though, what was different in the summer months, when she made such great strides in her social development. The teacher replied "you were happier." WOW!! What a blow. But it is true.

I woke up thinking, "why was I happier?" Was it the workouts, the camping trips, the free time? I don't know, most likely all of that. But I know I was in touch with myself. I wasn't drinking so much (maybe) and I was knitting too. I feel like life is sweeping me up and away from all that I really want and need to accomplish to honor Alex and change this world.

This point really was driven home when we attended the Children's Hospital Remembrance Ceremony last week. Alex's name is on a plaque near the chapel at TCH now. This was the dedication ceremony of that Remembrance Wall and also an opportunity to plant a bulb in the Hope Garden. While the pastor was thanking all of these different persons/families, etc. I felt, I should have done that. I want to volunteer here and make a difference to families with sick children.

At this ceremony, I also saw Dr. Foreman. I was able to ask him some questions, I have always wanted to ask since the loss of Dear Alex. I asked him "has it happened again?" He replied, "no". G-"So in all of medical history, there are only two cases where a jpa or gangliganglioma has fostered a second high-grade tumor?" F-"Yes." I asked, "have you considered going back and reexamining the biopsy to double check the original diagnosis?" He replied, "Yes, I have and we did (and it was correct)." Then I asked if he knew of any study regarding Breath Holding Spells and brain tumors. (I asked this question, because Alex's pediatrician has had three kids, in her decades of experience, with BHS and two of them (Alex included) ended up having brain tumors). He said he did not and would look into it. Then we got into a conversation of correlation v. causation. I then introduced Zoe to Dr. Nick and Zoe was not happy to see him. You could see her brain just spinning with memories, etc. Dr. Nick is British and very distinctive. I could pick him out of an airport filled with people quite easily. And Zoe was not pleased with these memories, or rather was confused by them. So then we went to plant the bulbs. Zoe wanted to plant several and we plan to go back in the spring to see how they did.

Finally, the Kabbalah class is starting to get to me. Kabbalah is about finding parallels, light in the dark, etc. It is very difficult to believe that the loss of precious Alex is a part of a destiny for me. If I had known that, would I have had children? Would I choose to live this life? I don't know. But it really does not matter since, I am here, I have children, I am living this life. So what do I do with that? I know I have to work on my own self value. I know I don't think highly enough of myself. Who does? But that is a hard task for me. I need to go on that show "How to look good naked!" where the gay guy helps women break through their warped body image. That would be a huge gift to me if I could feel comfortable in my body instead of hating my body so much. That has to affect how I feel about myself! I know I am kind and generous and a good mother, but I also know that I hate my flabby gut and have always hated my thighs. And as I age, I'm just adding body parts to my hate list: neck, arms, back, etc. Where will it end?

Okay, I'm done. This is just too much. Back to that gnawing gut again!

Love,

G

Friday, September 19, 2008 - A Day I don't want to remember . . .

2008-09-18T19:03:00.004-06:00

So I just had an incredible weekend in Richmond, VA with some friends I have known since elementary school all the way through college and to today. We all gathered to witness the wonderful wedding of our dear Terry and her husband, Aaron. It was all that I hoped for her and much more! Aaron is just a wonderful, kind, beautiful soul. I can't wait to get to know him as well as I know Terry (though the feasibility of that is slim.) I reveled in being with my friends of old. I feel so comfortable and real with them. Many did not know what the past two years have been for our family and were quite taken aback to find out. Yet, the leper I was not. Each one said or did (thanks Jen!) something that expressed deep sympathy and concern. This could have been a drunk fest for me. I worried about making a fool of myself for weeks until my therapist told me that I needed to "honor Alex and be the mother he respects and wants to show off to the world"! Boy! that worked!! I still imbibed but was able to remain in control and off the piano top! The fact that I was sweating buckets probably helped as well!

So while I was gone, Steve's mom, Linda sent ZG a baby. Zoe had asked for a baby in an earlier phone conversation with her Nonnie. It is a Middleton Doll that has big brown eyes and brown hair, is very realistic and resembles Alex very much. I will attach picture for you to see what I mean. Anyway, the doll seemed really spooky to me via its picture I received in Richmond. Zoe liked the doll and played with it a little bit, but I had not seen her touch it except to carry it to me when I arrived home. On Tuesday, Zoe and I had this conversation while I was preparing for a bike ride with our bike trailer (ZG and Alex used to ride in this together).

Z- Mommy, Alex sits there. He will be so excited to go on a bike ride. Let's go find him!
G-Zoe, we can't find Alex. He is an angel and does not have a body.
Z-Why?
G-Because he died.
Z-Why?
G-Because he had a bump inside his head and it grew too big and Alex could not breathe and then he died.
Z-Why?
G-I don't know why Alex had to die. I know we miss him very much and it is very sad that we don't get to see him anymore.
Z-(silence, look of great disappointment)
G- (leaves garage, too much to handle)
Z- Mommy, let's ask Nonnie to find Alex!
G-Baby, Nonnie can't find Alex.
I turn around and Z just looks like she needs a hug, so I pick her up and hold her and she holds on to me with her arms and legs as tightly as possible. And we start crying and I say "Zoe, your brother loves you very much and I don't know why he had to die. It makes me very sad that I don't get to see him anymore." Then we just held each other and cried some more. Then Z was done being held and started to push away from me, so I let her down.

Later that evening, Zoe had almost the exact same conversation about Nonnie being able to find Alex with Steve. As Steve and I were discussing this later, we realized, Nonnie had sent the WRONG baby. Zoe did not want just any baby, she wanted Alex. Just about that time, Zoe came into the house and said "Mommy Dad (both of our kids called each of us Mommy Dad(dy) come see, come see!! I made something!" So we followed Zoe outside to her sandbox which had this large well packed and defined mound that was even kinda decorated with finger lines. Steve and I oohed and ahh'ed over Zoe's mound and went inside to finish our dinner. Later Steve turns to me and says,"you know what that was in the sand box don't you?" I reply, "besides a mound?" and he says "a bump."

So take that in for a while then continue reading if you choose.

As you know, I am currently working for Kabbalah Experience. I have been given the opportunity to sit in on a Level I class, Soul, on Thursday mornings. So far I have had two classes and can tell this is going to be deep. One thing that was mentioned that I wanted to share with you is the difference between Kabbalah and Eastern (Buddhists) beliefs. In the East, an ultimate goal is to be free of all attachments so that one can be "detached" and experience God's mind. Our pain (and joy) are direct results of attachments to people or places. To hold on to these attachments prevents us from experience God. This is a very internally driven view in my mind.

On the other hand, the Kabbalists say that true understanding of God comes from being open and aware to the parallels of our existence. The physical reality is paralled /mirrored/and effected by the spiritual reality and vice versa. So to Kabbalists a great loss, like the loss of our dear Alexander, will bring connections to our lives. To experience God, we just need to be open to how and where these connections take us. Therefore, I see Kabbalah as a very externally aware practice. I am not ranking either of these points of view and I know I have done neither justice in explaining them to you here. I just wanted you to understand what I am thinking about these days.

So to end, I really want to scare you. Remember that baby doll, Nonnie sent? Remember when I said earlier that it was kind of spooky? Well the other day, I picked it up. I was planning on moving it someplace out of view. Then I held it, and it felt sooo very good. The doll has real weight to it and its bottom is shaped just like a diapered infants bottom. I started kissing it and holding it like a baby and felt joy in my heart. It was so strange (I know, I know). But it felt good. I carried the doll around for a while, on my hip, etc. Then I put it down. The next morning as I was driving Z to school, I started thinking about this doll. I just wanted to turn around and go home and get it and hold it again. So yesterday, after a very long day, and about an hour or more of trying to keep myself busy so I would not go to the doll, I went and picked it up. Again, I felt at ease and comfortable immediately. I just love hugging and patting this doll. I told my boss at the staging company about it and we agreed that if I start calling in saying I can't find child care for my doll then she can have me committed. But for the time being, we both think if it feels this good, then just do it. Steve is completely freaked out (I think) but he has not really done or said much about me carrying this baby around. We'll see how long this lasts.

Okay, there is so much more to talk about but I'm exhausted. Zoe is napping and I think I will join her!

Love to you all.

G

Friday, September 5, 2008- Letter to Parents of Children Fighting Cancer

2008-09-05T10:15:00.004-06:00

Here is a letter I wrote to a family who's child is fighting Leukemia. I just wanted to share it with you so if you know anyone (hopefully you do NOT) you could share the sentiment. Steve and I are doing okay. Being busy helps and hinders us. I told Ms. Grace yesterday, "I'm not used to this stress!" and she just looked at me and said, "now, Gwen . . ." So I guess the more accurate statement would be I'm not used to being in traffic, rushing from place to place and feeling like I am spinning my wheels and getting nothing done. So much is falling through the cracks. I am dreading the 19th and just to make it worse, I have scheduled my first session with a personal trainer that morning. Maybe I can just fatigue myself out of that day! Wish me luck! Zoe is doing well. She still dances to her own beat and is very head strong. (I have NO idea where she gets that trait!!) I have put some pics from our last camping trip at Steamboat Lake up. I hope you enjoy them. So here's the letter:

Our mutual friend, xxxx, told me about your precious little girl. Our son, Alexander, lost his fight against brain cancer last December, and I may or may not know exactly what you are going through. I just wanted you to know that you CAN do this. You can do this for your little girl because every ounce of strength you muster helps strengthen her. Your smile helps her feel better. Your laughter fills her heart and gives her comfort. Your care and tender touch heals her soul and lifts her spirits. She is a precious soul that will never leave you nor stop feeling and knowing your love. And the gift is, neither will you ever know a day without knowing her love and spirit. Hold your baby girl, talk to her, sleep when you can, but if you need caffeine don't hesitate to take all that TCH has!!!

I wish I could tell you (lil girl's name) will make it through this unfair test of her physicality, but I don't know that. I do know that TCH is an incredible facility with amazing doctors and specialist. My prayer is that you feel that your child is getting the best care. If not, then fight for it!! You are ALWAYS right and should always be listened to when it comes to (little girl's name) care. Do not hesitate to speak up for her.

Alex told my husband one night, "Daddy, if you get scared you can hold my hand." Sometimes I wonder if these souls know that they are here to make us better. To give us insight into the blessings and trials of humanity. I bet you know what I am speaking about.
If you ever would like to meet and just hug one another, talk, drink coffee or anything; please do not hesitate to ask. I would be honored to run to and fro the hospital for you. To bring you "non-hospital" food. To do anything that would make your life easier. Just ask and I will be there. Does your dog need walked? Your house need cleaned? Your car need a tune or fill up? Just ask. Please know that (little girl's name) and her entire tribe of friends and family are in my prayers and that I have complete trust in your abilities to take care of your dear child.

God bless.

August 26, 2008 - 38 Weeks

2008-08-26T09:15:00.002-06:00

Hi Everyone,
Well, life is roller coaster for me lately. The transition to working two gigs has not been an easy one and the change in seasons is also very trying. You see, Alex and I always loved autumn. The cooler weather, changing colors and falling leaves always signaled the coming of Alex's birthday. There will be no birthday party this year with my beautiful boy. I know this and absolutely HATE it.

Zoe has been asking about her brother ALOT these days. Just this morning she asked me, "Mom, where's Alex?" To which I had to reply, "Alex is dead baby." And Steve added, "He is not here, Zoe."

On our last camping trip she and I had the following conversation:
Z-Mommie, Alex come back like Nonnie?
G- No baby, Alex is not coming back.
Z-Alex has a bump, Alex has a bump inside his head?
G-Yes, baby.
Z-Alex need a band aid!
G-No baby, there is no band Aid for Alex's bump. We tried very hard to find one. It is very sad that Alex is not here. We miss him very much.

On most every other front, Zoe is doing fantastically! She has really blossomed over the summer and her smile has returned.

I know this post is short, but you all are probably grateful for that. I will do my best to keep you more up to date on our status. Just know that rough waters are ahead for us from this point on.

Take care and take a moment to appreciate the ones you love in your life today. It is worth the effort!

God bless,
G

July 25, 2008 - The Circle of Life

2008-07-26T09:38:00.005-06:00

Good Morning All. I am writing to you from a place of peace and tranquility. Life has worked some incredible miracles for me recently and I am so excited to share them with you. First of all, a dear friend and wife to one of Alex's best friends has organized an incredible group of women to participate in the East Boulder Relay for Life benefiting the American Cancer Society. I have been invited to be a member of the "Sleepless Beauties" team and next Friday night we will walk to honor Alex, the organizer's mother (who is a cancer survivor) and another member's husband who is winning the fight against breast cancer. There is just too much cancer in this world and I am honored to participate in this event. Thea (the organizer) unbeknownst to me or Steve asked all their guest at her husband's birthday party to purchase (and decorate) a luminaria to honor Alex at this event. If you would like to purchase a luminaria to honor Alex or someone you know and love please go to www.eastboulderrelay.com . They are $10 each and will light our path as we walk through the night next Friday.

Next I want to tell you about our last camping trip. I was so excited to have three other families join us for camping at Mount Princeton last weekend. While I had a blast, the best time was watching Zoe following her friends in the adventures of camping. She was so proud of herself for climbing on the rocks, jumping off rocks, walking over narrow bridges (which I could not do), and wading in the creek. She hiked with us and was always saying "Look at me! Look at me!" when she tried something new. It made my heart sing to see her so joyful. She really loved being around all of her friends.

One family had a son named Alex. When I told Zoe the list of kids that were going to be there and came to "Alex"; her face lit up and she was so excited! "Alex is going camping with us!!!" I knew I had to do some quick damage control and said "no, baby, not our Alex, Jackson's Alex". She took my words in and became very quiet and walked away. She never mentioned it again. It was strange to be calling Alex's name again and when I asked Steve what he thought about saying his name he said "it felt good to speak his name again". When he said that I realized he was right! Can you believe that just speaking his name could bring joy?

So last week I started a part time gig with Red House Staging. I will be doing the administrative and bookkeeping work for this home staging company that operates out of Washington DC. The owner, Lyric, is awesome and about to deliver her second child in early August. So far this week we have been able to set up her accounting and I even got an old debt collected for her. She and I should make a great team!

On Friday, I also accepted an administrator position with the Kabbalah Experience. This is a religious studies, non denominational, non profit. It is a small organization and my work will be as their "face" or administrator. I have to tell you this story. So on Tuesday, I was speaking to my therapist and she started talking about "compassion for self, so one can be compassionate to others" as a difficult concept for most humans to comprehend let alone accomplish. I was confused and asked, "But don't you think I am compassionate?" She said something to the effect that "while I am compassionate to others; I do not honor myself as worthy and deserving of compassion so that compassion is limited". I still don't get it, but anyway the night before the interview I asked Steve to tell my about Kabbalah and Jewish Mysticism. He asked me to look it up on wikipedia then come back to him. So I did. While I was reading I came across this:

"Righteous" humans (Tzadikim) ascend these ethical qualities of the Ten Sefirot by doing righteous actions. If there were no "Righteous" humans, the blessings of God would become completely hidden, and creation would cease to exist. While real human actions are the "Foundation" (Yesod) of this universe (Malchut), these actions must accompany the conscious intention of compassion. Compassionate actions are often impossible without "Faith" (Emunah), meaning to trust that God always supports compassionate actions even when God seems hidden. Ultimately, it is necessary to show compassion toward oneself too in order to share compassion toward others. This "selfish" enjoyment of God's blessings but only if in order to empower oneself to assist others, is an important aspect of "Restriction", and is considered a kind of golden mean in Kabbalah, corresponding to the Sefirah of "Adornment" (Tiferet) being part of the "Middle Column".

This was the day after my therapy session and I started to see myself as a thread being woven into a grand fabric. The next day the interview went very well and yesterday I got the call that they want me and are very excited to begin working with me. Last night I asked Steve "don't you think it is interesting that in one week I got two jobs?" He responded, "Yes and not just any two jobs but jobs that meet all of your expectations and needs." We continued talking and it came out that both my desire to be a part of a creative environment and a spiritual one has been fulfilled! Do you see this? I am now headed down a path of creativity, individuality, spirituality, learning, and self growth. On the Kabbalah Experience's website their header reads "Reflecting the Authentic Self". In the interview, they said that I would be assisting people to improve and enhance their lives. That this organization's goal is to actually help change the world (or people in it) into self-actualized human beings. I am so jazzed about this! And I get tingly and almost creeped out when I realize that this is really all a part of my soul's journey. Can you say, WOW!!!

Okay, so I also want to share with you an experience I had last week. Zoe was outside and she was asked "to help daddy with the hose". When she completed this task, I said "Zoe that was so good, you are such a good helper!" She kinda stopped and thought about my words and then said "thank you mommy", and came and gave me a huge hug and said "I love you". When she paused I swear I saw every cell of her being swell while absorbing the praise she had been given. At dinner I told Steve about my observation and then said "you know instead of taking in and absorbing praise, I deflect it. But criticise me or even say something that I can construe into criticism and I take that in deep to the soul level". He acknowledged that I was correct and that it was a "learned technique". Then I said, "I want to learn by Zoe's example, how to take in the praise and let the criticism drop." It is so grand to have Zoe as a teacher in these lessons. I hope you are able to learn from the children in your lives as well. They have so much to teach us!

So the night before my therapy session, I was putting ZG to bed and my eyes locked on Alex's leg braces in the shoe organizer. I had such a strong desire to go and hold those braces. I had to fight this impulse because I knew it would upset Zoe who was on the verge of sleep. I had planned to take them to my counseling session but had to rush out the door. So next week, I plan to take some of Alex's clothes and definitely those braces and just hold them for the first time in a long time. I know I need to do that. I'll let you know how it turns out.

Okay, that's everything, I think. I will keep you updated!

Much love to you and yours!
God bless!
G

Wednesday, July 9, 2008 - 31 weeks

2008-07-09T15:06:00.005-06:00

Hi All. Summer is flying by for us. We just returned from a visit to my hometown. We had a great visit and Zoe really enjoyed being with her extended family! We spent most of our time at the Fat Boys Ranch near Lake Tenkiller. Lake livin' is grand! We had such a great time on the water. We were able to see fireworks from the boat. Zoe got to feed fish and float in the water. She even drove a Jeep! Of course it was her cousin's mini-Jeep but she did not care. She really enjoyed having a big boy to play with all the time. Evan also seemed to enjoy the company as well. It's visits like this one that make you want to win the lottery and buy a plane so we can be with family more often.

I had a few moments of melancholy on this trip too. My nephew has grown so much since I saw him in December. It made me wonder about Alex. What would he look like now if he had been tumor free? How great it would be to see him enjoying his family and the new experiences! When we got home, I felt like I had left him behind. I had that same experience in a dream that night and it was so horrible that I woke myself up and stayed up. Then I found a video of one of Alex's physical therapy sessions. After opening and closing it a few times, I watched the video. Alex was so sick but he's laughing and working hard. It was so great to see him move and smile and laugh. It makes my body ache to hold him though.

So about three weeks ago, I started acupuncture to help me with my constant back pain and overall "well being". The first session had a huge impact on my system. So much so that I bought a pregnancy test. Of course, the results were negative. But for the day and a half that I thought I was pregnant, I was on cloud nine. I so want to meet another one of our children. We have great children and I adore being "mother" to them. It seems to be my calling. Steve is not on the same page as I am on this topic so it is a good thing that things are back to normal. We had decided to stop all conversations for six months a few months ago. I was driving us both insane. Then Steve came to me and said that if Zoe said that she wanted a sister or brother then the discussion could be rekindled (so to speak). Well, I knew not to say anything to Zoe because Steve is way to smart for that to fly! A few weeks later, we were all watching television and I was knitting a baby blanket for our neighbors; Zoe saw a baby on tv and said "I want a baby." I then said, "Zoe what do you want?" And she repeated, "I want a baby." I then asked "Dad, did you hear that?" to which he replied, "Yes, but that does not count!"

This exact conversation happened again a few weeks ago and Steve was right there, scowling at me. I have no idea what the universe wants from me/us at this point. I just know that if it is meant to be it will be and I am not going to worry about it. I just really loved that feeling and have since tried to find it everyday. There is an author out there that talks about "having fun everyday" as one of several steps to a good life. I know that when I laugh and play, I feel so much better. Zoe and I have come up with this great way to swing together. Almost everyday since we have had our "swing date" and she just "wee"s and smiles the whole time which makes me respond in the same way. It is great! I highly recommend that each of you set aside five, ten, sixty minutes a day to just have some good ole fun. Try dancing, singing, walking like an Egyptian! It really helps change your day!

Okay, well that is a good note to leave on. I hope you are all having a wonderful summer. I hope you find a bit of joy in every day!

Much love!
G

Wednesday, June 25, 2008 - Update

2008-06-25T17:16:00.003-06:00

Hi All, I apologize for the reduced number of postings. Summer has been quite busy. Can anyone believe we are almost done with June and I have actually seen Christmas decorations in two stores. Unfortunately, Father's Day coupled with the brain surgery of a close relative sent Steve into a funky spiral. He was able to come out of it on our camping trip this past weekend. Also, the surgery was a success and the prognosis is very good! Thank you all for your prayers and support.

Our camping trip was really great. Steve took Friday off and we were able to head out as soon as we picked up Zoe from school. Friday night was mostly just spent setting up and getting to know the terrain. Then on Saturday, we headed out for a hike that ended up being over six miles. Zoe was a real trooper on the hike and having a kiddo backpack was a real life saver. At one point, when she had worn Steve out, I ended up putting her on my shoulders and carrying her up the mountain! The reward was a beautiful rest at some spectacular falls/river. The water was ice cold and the sound of the river was mesmerizing to me (and Zoe). When we finally got back to our tent, we all took a great, long nap! We all slept really well up there. I was surprised. I love my ThermaRest air mattress and down sleeping bag. Our tent was great too! On Sunday we took a two hour horse ride. Zoe was great for the first 15 minutes then she was very uncomfortable and distressed by her constantly slipping cowboy boots! Once we got that situation under control, she had a great time. Of course just about an hour and a half into the ride, it starts to rain. Mountain rain is very uncomfortable on top of a horse with a screaming three year old and no rain gear. I do NOT recommend it! Luckily we got to the stables quickly and Zoe was ready to go again!

So I'm okay but I am freaking out on how to make ends meet. I really need to return to work and bring in some income, but that thought does not make my heart sing! It actually makes it sink. I really want to honor Alex's life with my time, attention and energy. So far the most we have done is the Steps N Strides Walk and in August, I will participate in the "Relay for Life" to benefit the American Cancer Society. I know I need to give myself time, but I don't want to lose our house in the process of our grief! This sucks on so many levels for so many people and I'm afraid the end is not in sight.

So did you know that my brother is in Afghanistan? He is part of the 101st Airborne and he is the pilot of a Black Hawk helicopter. His birthday was Saturday and I just missed his phone call this morning. I know many Americans are anxiously awaiting to have their loved ones home. I am most definitely one of them. Joe has a lovely wife, Courtney and an incredible little boy, William. I can't wait to see them all again. You may remember we met for the first time when they came out for Alex's service in December. What was so amazing about that was how quickly and easily it was to be around each other. There was none of that "awkwardness" one would expect when meeting a sibling for the first time in thirty something years.

So the play space is coming along quite nicely. We laid sod down three weeks ago and Zoe's house is mostly complete. I am awaiting the items for her "sensory garden" to come in to finish off the space. Steve still wants to finish the stage as well. So far the favorite item is the water feature. Zoe loves to be naked and splash around. It is almost more of a toddler tub than a water fountain.

I hope you all have a happy holiday.

God Bless!
G

Wednesday, June 10, 2008 -Zoe's Questions

2008-06-11T16:54:00.003-06:00

Hi all. I want to share a conversation Zoe and I had the other day.

Z - "Mommy, I don't want to watch this show. It's Alex's show."
G- "Yes, it is one of Alex's favorite shows."
Z- "Mommy, Alex come home soon?"
G-"No Zoe, Alex is dead. He can't come home. And that is very sad."
Z- "Alex cross the street?"
G-"No, Alex did not cross the street. Remember, Alex had a bump?"
Z-"Alex bonk his head?"
G-"No Zoe, Alex did not bonk his head. Alex's bump was inside his head." (tears flowing now)
Z-"I kiss it!"
G-"Zoe, that is very sweet. But you can't kiss Alex's bump. It is very sad that Alex is not here. But he loves you very much and will always be with you here (point to her heart)."
Z-silence
G-"Would you like to come outside and see your new playhouse?"
Z-"New playhouse? Oh YES, YES, YES!!!" (runs to back door)

The next day we had almost that exact same conversation again. Zoe really wants to make sense of this and she really, really wants her brother back. She wants to "kiss it and make it better." It is very sweet and very sad.

I have to say that I am doing better. I booked three camping trips for our family this summer. Our July trip we will be accompanied by five other wonderful families, all with young children. I'm so excited. We invested in some new camping gear and can't wait to get to the mountains for some R and R. We never got to take Alex camping. We did do hikes with Alex and several car rides. But it has been over two years since we really spent much time away in the mountains.

In addition to the camping trips, we are planning a trip to my home town for some fun lakeside living!! My family is going to be STUNNED when they see how Zoe has grown. I can't wait to get and give big hugs from them all!

Steve and I have been working hard on the back yard and specifically the play space. We should have it pretty complete within a week or so. We got a great play house kit for Zoe and friends assembled this past Sunday. She is so happy with it! We are in the process now of building a platform for it and painting it. I hope you like the picture!

Okay, I'm going to meet a girlfriend in a few. God bless you all and thank you for your continued support and wonderful comments.

G

Monday May 26, 2008 -My First Memorial Day

2008-05-26T07:39:00.005-06:00

Good Morning. So the weekend has been a good one so far. Zoe had a play date with a new friend. He is five years old and they were fast friends at their first meeting a few weeks ago. Zoe absolutely loves following this boy around and playing with him. He is very sweet and just great to ZG. I know it is "co-dependent" of me; but I am happy when she is happy! I think all parents like to see their child(ren) smiling! I know I do!

Saturday, we kicked butt and took names on our front yard!! Our yard has always been an eyesore and on Saturday from dawn til dusk we whipped that puppy into shape! It looks better now than it has the entire six years we have lived here. It is a pleasure now to drive by the house and to open the door to friends. Needless to say, yesterday we were utterly exhausted!

Late yesterday afternoon, we headed up to Erie to be with some dear friends up there. It was a very laid back time and just what the doctor did not order! We were so excited to have ZG asleep before nine o'clock that Steve and I took the opportunity to watch a movie "on demand".

You see, I have fallen in love with Eddie Vedder's song "Hard Sun". I found out yesterday that he wrote and performed this and all of the other original songs for the movie "Into the Wild". So Steve and I watched it last night. It is the story of a young man that travels to Alaska after his college graduation. It turned out to be a VERY intense movie. I was sure I would have nightmares due to the subject matter. I did not have nightmares but I can't get this story out of my mind this morning. I just may watch it again! You see this young man is a "lost son" and during his travels to Alaska he becomes soul-bound to two characters that have each lost a son (via different means). The lessons of karma and "oneness" is profoundly exhibited in this movie and I must say very moving.

So today is Memorial Day. We have decided to update our prayer flags in front of the house today. You might remember last year's "Pavers and Prayers" party; where friends came to the house and made pavers for the play area and prayer flags for the temple chimes. It was a great day for everyone. The prayer flags are supposed to be granted when they fly off the temple chimes. Unfortunately, I used faux twine that is obviously indestructible and the prayers are just getting torn up in the wind. So Steve, Zoe and I will be making new prayers today and attaching those to the temple chimes with real twine.

Another way we will be honoring Alex is by sponsoring a Cambodian boy named Loun through the International Childreach Program. Steve and I just made this decision about five minutes ago but already I can feel my maternal warmth rising and releasing little specks of hope and joy in my body.

I hope today is a good day for you. We have had perfect weather the last two days but today will be cooler and cloudier. I'm glad about that. It seems appropriate. I have never really honored or even thought about anyone much on Memorial Day before. It has always just been a day "off" to me. This year though, everything has changed. I hope to use this day for healing and prayer. I hope to have a few milliseconds (or more) in the moment; enjoying the beauty and preciousness of life and being. I pray you do too.

God Bless.
G

Friday, May 23, 2008 - One Day at a Time

2008-05-23T05:51:00.002-06:00

Hi all. So Tuesday marked six months without Alex in our lives, physically. I have actually felt his presence more lately and had a vision of him the other night. I asked my therapist if I was insane and she said "most certainly"! No, she didn't but that would have been funny, huh? Actually, she said that after such a "trauma" visions are actually quite normal. With that being the case, I wish it would happen again. I do so miss our beautiful boy. Every day without him is such a struggle lately and time is not making the pain any easier to handle. If anything, I feel things are getting worse. In lieu of that and recent events, I have seriously curtailed my alcohol intake. While it makes great sense to want to medicate these horrific feelings, it ends up actually putting me in a great deal of danger. I have come to understand that alcohol, in addition to lowering your inhibitions, also lowers your "filters". You see when I drink in excess I become so depressed that I forget how much I have to live for. I talk and think about being with Alex and at times it has become pretty scary for me and Steve (and my therapist). I have also recently learned that my medications are not helping (when mixed with alcohol). It seems that the anti-anxiety medication I am on actually increases the likelihood of addiction and the effects of the alcohol (as well as seizures). So when I say scary, I mean SCARY!!!! Wish me luck, strength and peace. I need all of them.

In addition to that struggle, I have not been to exercise class since Monday. During a backward lunge on the step, I heard a loud "pop" and immediately felt pain in my left calf muscle. It was so bad I had to scoot down the stairs to get out of the gym. I did the "R.I.C.E." thing Monday and the pain is greatly decreased but I can still feel the pulled muscle. I plan on cleaning the house today as my workout!

I want to take a moment to say "Happy Birthday" to Evan Winston!!! Evan is such an incredible child and we love him sooooo very much. I can't believe it has been seven years since his birth. Happy Birthday Evan! You are VERY SPECIAL and VERY LOVED!!!!

I would also like to encourage all of you that are in the area to join our family at the Kyle O'Connell Foundation's annual Steps-n-Strides Run/Walk on June 1st. We will be walking to honor Alex along with other families that have dealt with pediatric brain cancer. You can register at www.kyleoc.org !! Hope to see you there!

Finally, I would like to ask for your prayers. A member of our family is having brain surgery today and we are all just reeling!! It seems that we just can't catch a break right now. Please pray for the doctors' steady and skilled hands; the children's peace; the patient's easy and fast recovery; and our family's "break"!! We need one!

This weekend is Memorial Day. We plan to work on the yard and play area over the holiday and try to honor Alex in a very special way. I hope you join me.

God bless!
G

PS- Make it a GREAT day!!!

Friday, May 9, 2008 - Druthers Day

2008-05-09T12:58:00.003-06:00

So I can't tell you how hard life has been since Tuesday night. You see while I was reading Zoe her bedtime story, I realized that this is my first Mother's Day without the son that made me a mother. How can that be? Why must this be? Until last night, I was in a serious depression. I just could not imagine how I was going to live through this pain and anguish. Last night I realized that I could call upon my support system for help and that is what I did. So after three tearful talks I feel like I can do this and realize that I must. There really is no other option. Zoe is a wonderful child that I adore. Alex would never want me to give her less than my best. So to honor him, I will get up on Sunday and open the small box Zoe brought home from school today and feel her hug and soak up her love.

I wish all of the wonderful mother's I know (and the ones I don't) a spectacular Mother's Day. Please be kind to yourself and appreciate the beauty of your children (even if they are no longer children). I know Alex would want you to!

Much love and God Bless!
G

Wednesday, May 7, 2008 - Weird Space

2008-05-07T14:39:00.004-06:00

Hi all. Zoe's birthday party was a success and if anyone wants some "death sticks" aka: mac 'n cheese on a stick; just let me know. We have tons frozen in the freezer! We also have a good portion of a keg of beer left over, even after lending it out for a neighbor's party. Needless to say, my pants are getting a bit snug! Zoe had fun but only after the party died down a little and she and a few friends headed over to the playground. I think she was overwhelmed by the amount of people. We also think there may be some real emotional baggage for Zoe related to birthday parties, since we had three bday parties to celebrate Alex turning 5 yrs old.

I know ZG misses her sweet brother. Every time she talks to her grandmother, or a departing parent, she says "you come back, okay?" We always are very reassuring that we will be back. The other day, we were in the nursery and Zoe said "Alex come back soon!" I had to reply "no honey, Alex is not coming back" and her light and bright energy changed immediately to an angry and dark mood. It was heart wrenching.

Yesterday marked 22 weeks without the most wonderful, beautiful little boy I have ever known. I miss him so much my body still aches with the pain of it. On Friday night, we decided to have some family time outside. Steve built a fire in the outdoor fireplace and the three of us sat outside. It was great and very lonely at the same time. Alex loved sitting by the fire. He loved helping his dad stoke the fire and build the fire. It was one way we could get him outside when he did not feel good (which was a task toward the end.) We have so many good times around that fireplace. It was very bittersweet. I guess that is how it will always be from now on.

I can't decide what to do with my life when I grow up. I just wish it would come to me with the energy and enthusiasm to make it a reality. I have too many interests and seem completely uninteresting at the same time. I saw so many friends at the bday party that asked "so what's up?" I really had no answer that was of any interest. How do you say, well, I'm just trying to not cry today, to not completely break down and melt into the ground today, to maintain a semblance of normality and acceptance of a life without my son. No one really wants to hear that. I have had friends call and email for lunch and I just do not have the energy to call them back. I am lonely, but don't really know how to be around others right now. It's a whole new world for me but everyone else is living the same existence with the progression of time.

I did think of a great story to share with you all. I finally found a fabulous hairdresser. We met a few years ago and I adore her. At our last appointment she told me about how Alex and I have changed her father's life. You see, he survived the death of his brother, at an early age. It was a tragic accident and was not discussed during his lifetime until she talked him into pulling out the pictures and remembering the precious brother he had. It has brought a lot of healing to this family and I have to think that Alex's spirit made it possible.

Well that is about as upbeat as I can be right now. I am going to have some hot, keg beer!! Come and join me!

Much love and God Bless,

G

Tuesday, April 29, 2008 - 21 weeks today

2008-04-29T13:30:00.002-06:00

Hi all, today marks the end of 21 weeks without Alexander. I have to say the days since my last post have been quite trying for me. Last Tuesday I got hit with a triple whammy. It was the five month anniversary of Alex's passing; I met with my personal therapist and attended the hospital's parent support group. At the group, we shared the video our neighbor made for Alex's Memorial Service. I had seen it a few days prior, for the first time since the service, but it was Steve's first time to see it since then. Watching this wonderful video of our beautiful boy over his five years was excruciating for me. It makes my skin ache to hold and touch him. I know it was hard for Steve as well. He did not speak at all during the session.

After Linda left, my body immediately fell ill. I was knocked out by a bad cold, sinus infection etc. When I started to feel better, Steve and I worked in the yard the entire weekend. We have started a "rainbow garden" for Alex. As a result of all of the hard work done in the yard, come Monday, I threw out my back buckling ZG into her carseat. So I was down and out for about 2 days, then very tentative with all other activities up until yesterday. I finally got back to my workouts yesterday morning after two weeks. It felt good even though it did almost kill me.

So last Thursday, I had a job interview with three Realtors in the neighborhood. They were looking to hire an assistant. I just found out a couple of hours ago, that they chose someone else for the job. I was a Realtor, when Steve met me, and I loved helping others find their homes. It was a dream job for me. I knew, when I moved, that I did not have the contacts nor the knowledge of the area to become a Realtor here (besides the competition is fierce and the market well-saturated). The assistant job was full-time and I did have some anxiety about the time commitment but really started getting excited about the prospect. So now that I know I did not get this one, I think I will try something else. I have always wanted to start a "home staging" career. You know, making a home appealing to buyers via design. Well, if I can stay on this up swing, I want to put together a brochure, print up some biz cards and start working the market. I love interior design and ,while I don't have a degree, I do have some skill and I feel I could do a great job. So send me some good mojo and the energy to make it happen!!

Another thing that is helping me get out of the funk of the past few weeks is Zoe's bday. Zoe will have her birthday over the weekend and I love throwing parties. So I now have a project that is helping me keep busy and focus on the positive. I just hope the weather holds out for us. It is supposed to snow this Thursday and Friday! I know I am ready for the warmer, Spring like temps of the season!

I also want to thank our friends that have opened their homes and hearts to us over the weekend. You may not know it, but spending time with your families, has really made a huge difference to my emotional state. So thank you!! It was great seeing Zoe play with her new and old friends, and laugh, and be happy. I know she misses her brother so much, and feels very lonely at times; so it is great when she can socialize with other kids. And even better, when Steve and I can have fun too!

Okay, well tonight is the 8th out of 9 parent support group sessions. I really, really don't enjoy these sessions. You see, while I am learning something about grief, I endure hearing about some truly horrific tragedies of the other parents. The only reason I continue to go is because I want to support these mothers (and one father). I truly do care about them and their families. I also get to hear Steve's side of the story and his struggles/opinions during these groups. But, all that said, I won't miss them when they are gone (the sessions, that is, not the people).

Okay, well, I should end this. I want you all to know that your comments really help me through my days. Please keep them coming. Somehow knowing that I am not alone and that our experience is shared with persons, known and unknown, keeps me going. I think of you all often.

God bless,
Love,
G

Friday, April 18, 2008 - New, New Normal

2008-04-18T09:07:00.002-06:00

Hi Everyone,

So since Tuesday, Steve, Zoe and I have embarked on another, new, "new normal". For the first time in our lives, we are living as a threesome. I have to say it seems quite strange and very uncomfortable to me. Alex's presence is here but at the same time it is NOT here and we all miss him very, very much.

Yesterday, Steve was asked to speak to his fellow co-workers. His company will be preparing 24,000 gift bags for kids with cancer this year. Steve talked about the first time we received a gift. It was when Alex had just had the brain biopsy and he was in Intensive Care. I will never forget it. I was holding Alex in the rocking chair and the ICU nurse brought in this green piece of luggage resembling a turtle. Inside it were books, games, toys, bubbles, voice recorder and small DVD player. It was an amazing gift. I remember I felt so relieved that someone was thinking of us that knew what we needed even before we knew. I felt that we were not alone in this ordeal and that there is hope. This wonderful gift came from the Gabby Krause Foundation and you can read about Gabby at www.gabbykrausefoundation.org. So it is my wish that each of the 24, 000 gift bags that will be handed out have a similar impact on the children and families receiving them.

So I wanted to tell you all about "thawing". Thawing is a term a father who had lost his child, came up with to describe the grieving process. Until you go through a loss like this it is almost impossible to know what the experience is like. Thawing refers to the process of melting away sadness, despair, and sorrow so that you can get through a certain time period (varies constantly) feeling okay, like you can get out of bed. Then you realize that while you were thawing another layer of your sorrow has reached the surface and you are back in the pits again. Utter despair, angst and sadness consume you. You don't want to move, to talk, to eat, to drink, to breath. But you do and eventually, with help from family, friends, counselors, children, you find yourself back in the "thawing" experience. Unfortunately, you never know how long this will last, so you do your best to enjoy the time and to honor your child while you can. I think we all know our deceased children would never wish us to be in pain and sorrow. Children are all about love and joy and laughter and BUBBLES!!! Bubbles of wisdom that we have forgotten and have to relearn.

So I hope that helps you get some what of an understanding of what this confusing, ever-changing grieving process is like (for me, at least). It truly sucks and I don't recommend it to anyone! So, go enjoy your day. Be in this moment right here, right now. Listen to the far off birds sing their song, the squirrels scampering in the tree limbs, the wind talking through the leaves. This is all that really matters. You, Now, Here!!

God bless,
G

Tuesday, April 15, 2008 - 19 weeks without Alex

2008-04-15T09:56:00.003-06:00

Hi everyone. This is going to be a downer post so continue reading at your own risk. I'm quite sick and I think it is just from all of the stress/hell I have been through these last few weeks. The past weekend has been a real roller coaster for me as well. You see, Alex and Zoe's school, gave us tickets (thanks to Ms. Grace for asking and everyone involved in that decision) to the annual fundraising event which was a silent auction and casino night combined. We had not planned on going since we had blown our "wad" on the honeymoon. But when I told Steve about getting the free tickets he said he would go. Then on Saturday afternoon, his tune changed and he ended up asking me "why do you want to go so badly?" I thought about it and replied, "Have you noticed how quiet the phone is these days? The only person that called me this week was you and that was yesterday. I miss our friends. I really want to go to see our friends and reconnect with the school. They have been a wonderful source of support for us." With that said, and the tears in my eyes, he conceded to go.

The night was a huge success for both of us too. Steve did very well at the Black Jack tables and I had a lot of laughs with some dear friends old and new. The only problem was that I wore these high (did I say HIGH) heeled shoes and could not find a seat all night. My feet still hurt! After the party, we tried to hook up with our friends, but could not find them and ended up having an incredible dinner at Il Posto. If you have a special occassion and like authentic, fresh Italian food, please consider this place. It is just too good and the staff is very friendly and fun!!

Okay, so you are thinking, she's got sore feet what is so wrong with that, right? Well then came Sunday. On Sunday, I visited hell in the form of a Memorial Service at The Childrens' Hospital. Again, Steve tried to talk me out of going, but I refused (I should have listened this time). So Linda and I went. OMG, torture!!! Absolute TORTURE!!! There were so many families and so many beautiful children that are no longer a part of this reality. As soon as I sat down, I noticed a mom next to me crying and the service had not even started. Then I started looking at the program and reading the words to the poems and songs. AUGHHHH!! I started crying. When the slide show started, Alex's picture was the first one and that was it for me. Stick a poke in me I'm done!! (I know it is "poke a stick in me, I'm done," btw.) Then the mom with her little girl (about 4 or so) saw their baby and the little girl said "there's (name of child)" and the mom acknowledged her as she was weeping. Then the little girl began wailing. Wailing with such pain and sorrow. My heart was breaking all over again, because I wanted to wail right there with her. Her mom carried her out and the wailing continued for a while.

So at some point during the service, they gave the moms a rose and a glass votive holder with a flameless votive in it. All the time I 'm watching these parents come up and get their "prizes" I'm thinking, "so your child dies and you get a flower and a candle, RAW F'ing DEAL!!!" I really wanted to run out and just go but instead we stayed until the end, ate some cake and talked to a parent from the support group. I also got a balloon for Zoe and a glitter wand too. Then we headed home.

When we got home, Steve and Linda started preparing dinner for the evening. We were having some neighbors over to say "good bye" to Linda. Again, it was a fabulous time, but my experience was blackened by the hell of the afternoon. So I drank some wine, listened to the chit chat and did the dishes. Steve built a nice fire in our outdoor fireplace and the fun continued outside. Zoe would not sleep so she ended up outside as well. One funny thing about that- when Zoe saw the moon she said "moon, mommy, moon!" I said, "yes, la bella luna" and she said (for the rest of the night) "that's not a balloon, that's the moon, mommy!" You get it? "la bella luna" sounds like "balloon". Anyway, it was cute.

Then comes Monday!!! Oh geez! Due to our computer crashes, etc. we were only able to get our accounting system up and running on Saturday, thanks to Steve's diligent work. So Monday, I got to enter in every bank transaction for the year 2007. Well, if that was not like walking down memory lane!!! Again, torture. Every McDonald's Happy Meal we got after chemo; every Snooze brunch, every purchase on the Make A Wish trip, every meal at the Red Wagon Grill ( hospital's cafeteria) was relived. I was completely drained by the end of the day. I sat at this computer for over 8 hours yesterday.

Then to top it all off, Linda left this morning. She is going to be missed so much! Toby (her dog) not so much, but he is part of the package and we love him. Roxie is scouring the house trying to find her friend!!! So you can see why my body has decided to let illness take me down, can't you?

Just to polish this off. I want to share a reading from the service. It actually made an impact on me and I want to share it. So here goes!

To Honor You
By Connie Kiefer Boyd

To honor you, I get up everyday and take a breath.
And start another day without you in it.

To honor you, I laugh and love with those who knew your smile and the way your eyes twinkled with mischief and secret knowledge.

To honor you, I take the time to appreciate everyone I love. I know now there is no gaurantee of days or hours spent in their presence.

To honor you, I take chances, say what I feel, hold nothing back, risk making a fool of myself, dance every dance.

You were my light, my heart, my gift of love, from the very highest source. So everyday, I vow to make a difference, share a smile, live, laugh, and love.

Now I live for us both, so all I do, I do to honor you.

God bless!
G

PS- The first pic was taken the Friday before Alex passed at the Make A Wish Holiday Store/Party at TCH. The second and third pics are from Thanksgiving last year and the last one was taken over two weekends ago.

Friday April 4, 2008 - Vacation details

2008-04-04T13:40:00.004-06:00

Hi everyone! Well we survived our Honeymoon! It was absolutely FANTASTIC!! The hotel that we stayed at in Mendocino (actually little river) was the location for the movie "Same Time Next Year" with Alan Alda and Ellen Burstyn. I have wonderful memories of watching this movie with my mom during my childhood and it truly is one of my favorites. If you have not seen it and are in the mood for a romantic comedy/drama I highly recommend it!!

After Mendocino, Steve drove me to San Francisco to meet my sister and he headed back North to his college fraternity's charter dinner/weekend. My sister and I had a fabulous time in the big city and we realized the first night that while we have been in the same room over the past 18 months; we rarely had any time to be sisters. It was great to reconnect in such a wonderful spot. We stayed at a nice, European hotel in downtown and on Saturday we went to the Japanese Tea Garden. I have such Spring Fever right now. Everything was so lush and green, as you can see by the pictures I have attached.

Zoe and Linda had a great time and Zoe was okay with our absence until we called and reminded her that we were not there. I have to say though, it was wonderful to come home to her and get the biggest, longest hug ever! She even looks taller and her hair is definitely longer! Somewhere over the break, she started this faux crying thing that is just pathetic and actually kinda funny. She pulls it out over the littlest thing and it just seems so strange to see her like that. So I guess the trip did have some effect on her. Overall, I know she had a great time with all of her friends that made it over and set up play dates with her.

Our next challenge is Linda's departure. After six months she has decided it is time to return to her home. We will miss her so much! She plans on returning later in the year but in the mean time she will be missed!

So I want to tell you about the little, green Buddha in the pictures. Do you remember (did I write about) the Buddhist Monk, Eric that came by the house a while back? Well, after talking to Steve and I, Eric came in to meet Alex. At that encounter, he gave Alex that little Buddha. Alex really was not that impressed with the little Buddha since it did not resemble Spider Man at all, but I made sure we kept it around. Ever since Alex passed, I carry that Buddha with me. It dawned on me at the Japanese Tea Garden to actually put it in some pictures since I saw Alex in every beautiful flower and green grove. So I hope you enjoy the pictures. I just may have to travel the world's botanic gardens and publish a book some day!!

Next time, I want to tell you all about the parent support group "Colors of Healing" that we started a while back at Children's Hospital. Right now is not the time, but I will tell you all later.

I hope your Spring is bringing much beauty to you! God bless!

Love, G

Wednesday, March 26, 2008 - Mendocino, CA!!!

2008-03-26T09:24:00.003-06:00

I was sad to leave Gaige House and Sonoma yesterday. I was not sure the scenery or accommodations could get much better, but once again I was wrong!!! I am happy to report that Mendocino and the Heritage House are absolutely beautiful. See for yourself!!

I had a dream with Alexander Monday night. Once again, it ended when I thought "if Alex is dead, how is this happening?" But since then, I have seen and felt him on every sunlit leaf and wondrous blue wave of the ocean. I know he has brought us to this place because it is one of his favorites and he wanted to share it with us.

Yesterday, we stopped at a mall on the road. A young teenage man was walking in ahead of us and his dress was not appealing to me and I said to Steve, "I hope Alex doesn't ever dress like that!" I then realized what I had done. It still boggles my mind!

So today we plan to go to the lighthouse and state park down the road. We may go canoeing and or horseback riding too!!

Thank you all for the wonderful postings. I can't believe people still read the blog!

love and God Bless!
G

Monday March 24, 2008 - Honeymooners!!

2008-03-24T11:36:00.004-06:00

I have no idea if I mentioned this before, but Steve and I are taking a honeymoon (after 7 years of marriage) in California. We left last Thursday and after 15 hours of travel, we arrived in San Francisco. We spent the evening with Steve's sister and her husband. They took us out and on the town in SF!!! I remember having a great time and twisting my ankle. The details though are kinda fuzzy. The next day we went to China Camp and rested at Weber Point. It was beautiful and so quiet. I loved it. We went on a hike the next day and it was just what the doctor ordered. I also discovered that I like to take nature photo shots. I'm having a blast in this lush landscape that is Northern California.

Long story short, Steve left his wallet on top of the car as we were leaving Weber Point and we went to get a bite about 20 minutes away. This is when he realized the wallet was missing and we headed back to Point. We did a thorough search and just as we started to scour the road, Steve's mom called and said "Did you lose your wallet?" A very kind gentleman (and cute!!) had found Steve's wallet in the middle of the road and called the house! We drove back down and met him. We really wanted to buy him a drink but he had things to do. So I must say, the trip has been very interesting so far.

The next thing to happen was that I double booked our second night in CA. I had us in two hotels and so we missed one night at The Gaige House! We have been here two nights now and will leave tomorrow morning. This place is so incredible. The staff upgraded our room to a Zen suite. It has a "geodome" tub that Steve and I can both fit into; a Zen garden, and one of the most comfortable beds we have ever slept in!! Tomorrow we will head to Mendocino!

So this morning, I was relaxing over breakfast and I felt my muscles actually "release". It was a somewhat painful experience and I commented that my muscles really don't know how to be relaxed. They have been tense for so long!!! Anyway, it is my goal to get them used to this!

I hope you all are having a great day! I know I am!

Gotta love those Angels!!!

Love and God bless!
G

Friday, March 7, 2008 - Dreamy Alex

2008-03-07T14:05:00.002-07:00

So last night I had a dream. Alex and I were on vacation and I think Steve was working on this vacation, because we talked about meeting him "after work." Alex still had cancer but it was not terminal and he was quite active. I remember we went swimming, sight seeing and bought souvenirs from a very rude clerk. Anyway, I was so happy. I felt so much joy and delight in every moment of this dream. Alex made me laugh, like he always did, and it was just an incredible experience.

Unfortunately, all good things must end and this dream ended when this thought popped into my head - "how is Alex here, if he is dead?" and just as soon as that thought came to me, Alex was gone. When I told Steve about it this morning, I started crying (like now). I think the sadness comes from remembering the feeling of being with Alex. He always brought joy and laughter, smiles and amazement to my world. Oh, I miss him so much. So very, very much.

Sorry this post was such a downer. I just wanted to document this event so that I never forget.

Love and God Bless,

G

Tuesday, March 4, 2008 - Three Months Today

2008-03-04T14:31:00.002-07:00

Hi Everyone. Today marks the 12th week we have been without our dear Alexander. I could tell last night that Steve was upset and I asked him what was going on. He said, "I read the blog." I asked, "which one?" and he replied, "all of it, to March." Immediately my head screamed "why would you do that? What would possess anyone to torment themselves like that." Luckily I refrained from expressing this sentiment out loud and later he explained that he was downloading the pages and just started reading. I can't imagine how I would deal with such a thing. And to top it off, Steve brought in a box from the porch and announced that "you have a package." I thought it was a gift or something then I remembered that the video company that made a DVD of Alex's Memorial Service would arrive soon and put 2 and 2 together. The DVD has a beautiful picture of Alex on the front cover and just seeing that incredible smile sent my mind spinning.

So needless to say, today has been a hard day for Steve. I on the other hand had the blessing of walking into ZG's school this morning and seeing Alex's teacher from 4 months to 2.5 years standing there. She moved to Hawaii a few months ago and I just loved seeing her beautiful face. I think we both started crying immediately. I then asked her out for a cup of tea and we spent the next hour catching up and just touching base. She is such a dear person, it was so great to hear that she is doing well and finding joy in her life. Either she or the extra cup of Joe got my blood going and I was enlivened to get moving on one of the many projects to honor Alex that I have been putting off. I think the first one will to publish the book we wrote and illustrated together. It is a wonderful tale and I can't wait to share it with the world.

Last night I spent some time on Oprah's website in the online classroom for "A New Earth" by Eckhart Tolle. It was an incredible experience but I really need to finish reading the book to get the most out of it. Anyway the first note I took was this: "What does LIFE want from me?" Oprah talked about how she prays on bended knee for God to use her. This really touched me in a very special way. Instead of figuring out what I want from LIFE, perhaps I should ask LIFE what it wants from me and see what happens. I am excited to get that going. I just have to find a few moments of silence and stillness to make that happen. Much easier said than done, as any parent can tell you!!!

Another comment that touched me last night was trying to "be like a babe" as we experience our lives. This morning ZG woke up and we went straight to the potty. She did her biz then got off and went for the TP. Then I hear, "TOILET PAPER!!" It was like she had found the most amazing, most beautiful thing on earth. Her enthusiasm over toilet paper was remarkable and I immediately thought of how it would be to experience everything that way. Can you imagine if we walked into our jobs and said "TELEPHONE!! or FAX MACHINE!!!" and awed at the incredible technology we have at our fingertips these days? I am still in awe of my new BlackBerry and even do find myself saying "Cool!!" when I figure something new out!!

So I guess that is the point of this entry. To remind ourselves that this world is full of wonder. Even those every day people, items and places can help us experience the world again for the first time. I know Alex helped me do that every day. I also know that the beauty of my boy will never fade for me and Steve. And that is just one of our blessings.

Love and God bless,
G

Thursday, Feb. 21, 2008 - Survived Vday

2008-02-21T11:22:00.002-07:00

Hi everyone. Let's just cut to the chase. Valentine's day was a very hard day for me. Alex was present in so many ways. I missed him so much. I really wanted to buy him a Valentine's day card. I really wanted to make cupcakes with him and ZG. And I really wanted to kiss and hug him and tell him I love him. ZG and I made cupcakes and later in the afternoon we decorated them with our neighbors. Seeing Alex's best friend is hard sometimes because I am used to seeing her engage with Alex. So we made it through and now I can move on.

Zoe came home sick last Monday and once she was well, I got sick. I had a doctor's appointment Tuesday and he gave me the Z-pack for upper respiratory gunk. I'm just starting to feel a little better. Even though ZG was better, I kept her home all week. There's been a lot of illness in town and I felt it was the best choice.

Over the weekend we had a date with a wonderful couple that really know how to have fun. It was a blast and we really enjoyed our evening with grown ups!! We need to do that more often. At the end of the evening, the discussion turned serious and the following words came flowing out of my mouth.
"Alex gave us a challenge. He challenged us to find joy and live an authentic life. He challenged us to stop wishing and start doing! If you want health then go out and get health. If you want a satisfying, rewarding career then go out and get one or make one! If you want joy then go and find it and every second of every day; in every "bad thing" that happens there is joy!" I feel these words came from Alex and not me. And I really wanted to share them with you.

So I have some news!!! Steve and I are planning on taking our honeymoon. Yes, I know we have been married for seven years but it's never too late and we REALLY need it!! We hope to go to San Francisco, do the city thing then head for Napa/Sonoma areas then end the trip on the ocean at Mendicino. I am really excited about this and have decided to work out more often to really get myself in shape. I think the endorphines are starting to kick in and the pounds finally started to come off. YEAH!!

So I have to tell you all about Monday. Well instead of spending money on a dresser for our room, STeve and I decided we would take the one in the nursery and move ZG's stuff into the closet. This meant that Alex's clothes needed to be packed up. This was such a feat for me. I found myself bawling uncontrollably and smelling his clothes. I was upset because I did not want to "pack Alex away". It felt so wrong. Linda came in and saw how upset I was and suggested that I keep some of his clothes out or in a special box in the nursery. I agreed and picked out several of Alex's favorite things - Transformers, TMNT, Lightning McQueen and of course, Spiderman t-shirts. I kept one of this footie pajamas that are red and super soft and cuddly. I kept some of the clothes that we had pics of him in too. I felt better, but needless to say, I have not touched the rest of his stuff since.

Steve and I really want to move the playroom to the current dining room. I have so much anxiety about this task after Monday's experience. I would kindly like to ask for assistance. So if you are available sometime in the next week, can you please call me and perhaps help me pack up some of these toys, etc. I really need the help!

So my therapist said, "you are doing everything right." She was talking about working with Zoe to help her cope; planning a honeymoon; and working out and dieting to get the body I want. That was so validating to hear. I really felt good when she said that to me. She also told me that Alex's death was not a punishment for me. Rather it was simply a fact of life. That Alex and God had their own timetable and death is as much a part of life as is birth and living. She told me that the immortal gods of mythology always admired mortal man because they were able to value life. The Gods would live forever no matter what so this very moment had no significance. That is our blessing. Isn't that great?!

Okay, I have to go and get ready to pick up ZG. Her therapist said yesterday that she is seeing some improvement in Zoe's self worth, so that is good news.

Love you all, God bless!
G

Wednesday, Feb. 13th, 2008

2008-02-13T08:58:00.002-07:00

Good Morning. So much has happened and I have meant to write to you all but life is busy. So far the gym membership is being used but the pounds are not coming off. I guess that is to be expected? I heard about this cardiofree diet/exercise program and if this continues I may just move on to that. All of these classes make me hungry and since it is still pretty new I am not getting those much loved endorphins yet!!! That usually takes me at least 2 weeks. So I'll hang with this for a while.

Besides that the new med levels are doing there job and I can function these days. I may have to stop drinking though (note the non-committal "may")!! I have always been super sensitive to my drinking since my father abused alcohol. I was feeling pretty cocky since I had attended a couple of events and handled the alcohol very well. This past Saturday though, I went to one of those "slumber parties" for women only. You know the kind, with all of the "fun" toys, lotions and potions. Well I did not eat before going and just kept pouring myself more and more wine. Needless to say, I remember bawling during my ordering session and then pretty much everything else is a blur. I did not drive, for the record. I woke up in the middle of the night with all of my clothes on and Steve was very perturbed with me. Luckily I had drank alot of water during my wine glasses so the hang over wasn't too bad. It just made me think. If I am blacking out and stumbling drunk then there is definitely some alcohol abuse going on here. I really don't know what to do about this. I think I will just bring it up in the next counseling session. If you were with me Saturday night, I apologize profusely for my behavior. As a forty-something adult, I should be better at this than I am currently. Please forgive me.

So about a week ago, Zoe's teacher called a PT conference. She told us Zoe was not doing well in the classroom. She indicated that Zoe was disconnected and uncommunicative in the class. She also was not engaging the older children (as is desired) rather she was working more with the younger kids. I could not believe my ears. I remember during the summer, Zoe's teacher telling me "Zoe is bound for greatness, she just won't accept anything else!" So our very talkative, engaged daughter was a different child away from us. We knew she could be shy, but not to this extent. ZG's play therapist said it sounded like ZG was "fear based" in the classroom and that she just needed to be held close then encouraged to explore and engage. I can't tell you how upsetting this is to me. Personally, I think she does not want to engage with the older children because the last time she became attached to an older child (her brother) he disappeared and that is very sad to her.

Steve and I are thinking about redoing the arrangement of the house. Reducing the clutter in the play room and switching it with the dining room. This way ZG will be in the same part of the house as we are in most often and more contact will be likely. We also have to reduce her TV watching. You see when Alex was sick, they watched alot of TV together. Alex could not run and play so this was a shared activity for them. Also, towards the end of Alex's life, most of our attention was "used up" by his care. Fortunately, our dear friends and family made a concerted effort to help out with ZG. Nevertheless, she did spend alot of time in front of the TV. So that will be changing soon.

Okay, I just wanted to put these things out there. I will write soon, but until then please take the time to tell the ones you love how you feel! Tomorrow is a great opportunity to do so!

Love and hugs! God bless!
G

February 2, 2008 - Groundhog day

2008-02-02T13:16:00.000-07:00

Hi all. So things are not as dark as they had been these days. Getting off the sleeping meds really seemed to help. I also FINALLY found a therapist I like and believe can really help me through this. I can't tell you what a relief that is!! She told me that I need to solicit friends to get me out of the house those 10 minutes each day. So if you are interested, please let me know. She also suggested that I start journaling. You see I am GREAT at holding in/pushing down/ stuffing my feelings (no wonder I carry so much extra weight, huh?). She explained that while that "survival strategy" worked in my childhood that it was doing me a great disservice these days. The weight and power of this ball of emotion in my gut has been overwhelming at times. I am so fearful of its depth and pain so I just keep it all bundled up tight inside. I have not done the journaling yet but know it will be a useful tool when I do.

She also wants me to get on a schedule. I have been trying so hard not to take on any "projects" that would divert me from my healing. She explained that this was not a good strategy either. That I need a project, preferably one that will honor Alex. I have several ideas, so we'll see where they lead.

STeve and I are really having a very, very hard time. We find ourselves needing comfort that the other person is just not able to offer. It is a very lonely feeling. We have gone out the last two Friday nights and said alot of things that needed to be said. I am hopeful that we will survive "the most divisive hardship a marriage will ever face" but if we don't; we are dedicated to giving it all we can.

Zoe is doing okay. In her last play therapy session she expressed a need for a cohesive family moving in the same direction (can you say WOW!!). She also expressed some anxiety as well as did a lot of Mom nurturing play. She is very worried about me. This stuff is just amazing. Children never cease to be awe-inspiring, do they?

So we had a girls' night out this past week. I actually had a very good time and thoroughly enjoyed my time with some incredible women! We call ourselves the "Dazzling Dames" and wear tiaras during all of our gatherings. If you have never tried wearing a tiara during your day, I highly recommend it! It really does change how you walk and feel about yourself. So go and celebrate your inner Princess! Then tell me about it, please! I am planning another event for February, so if you see a bunch of women wearing tiaras come by and say "hello". My counselor said I have to do more of this kind of thing. I told her I felt bad not spending time with ZG and Steve. She explained that right now I need to take time for myself so I can be a good wife and mother. So I guess once again, I need to call on my support system.

Steve and I have also joined the local gym. I love doing aerobic classes and am very much looking forward to having endorphines coursing through my body. Steve also found a yoga class nearby that we started last Saturday and will continue to do together for 5 more weeks. I miss yoga but left the first class in a horrible mood. The instructor really pissed me off somehow and I was just plain old MAD! Luckily, she was not going to be our instructor for the remaining sessions. I have NEVER left yoga in anything resembling a sour mood, so this really threw me for a loop. Nevertheless, I am going back in an hour and very hopeful that I will leave in a better mood!!

Okay, well that is the update. The tears are still there every day. At least now I can start to imagine that one day I will be able to anticipate joy in my life. That is HUGE!!!

God bless!

G

Monday, January 28, 2008 - Dark Days

2008-01-28T09:10:00.000-07:00

Hi. The last week has been very dark for me. Remember when I talked about the black hole I was so afraid I would fall into after losing Alex? Well, I fell into it. I also started taking some new supplements and medication (to help me sleep) and after reviewing the side effects have called my doctor to let them know. I will go in this morning so perhaps this too shall pass.

The darkness felt alot like hormones but once that was ruled out and the mood continued I started to think. Have you ever not felt in control of your mood? I really did feel like something had hold of me and it would not let me "snap out of it." I have been a royal B-I-T-C-H!! I have been short and loud with Zoe and that is just NOT me!! Poor Steve and Nonni, they are just trying to get out of my way and have had to walk on eggshells around me. I keep telling them I hate this as much as you do but in 10 minutes I'm that crying, short tempered, ball of mush on the floor again. So wish me luck at the doctor's office. I REALLY need it!

God bless, hugs,

G

Tuesday, January 22, 2008 - 7 weeks today

2008-01-22T22:04:00.000-07:00

Hi. Life has been very difficult lately. The shock of Alex's passing is wearing off and the reality is setting in. I can cry at any given moment. Friends say "it's been seven weeks, that's nothing". Well it is something to me. It's an endless, gut-wrenching, abyss of despair that is my life without my beautiful boy. I miss him so much. I often think how easy it would be to end the pain and just be with him. (That is normal by the way.) But I know Alex would be very disappointed in me if I did that. I know he was my son for a grand, beautiful, joyous reason and I just have to push through this utter despair to get back to that place. It is just so very hard to do it without him, without his smile, without his laugh and his jokes, without his love. I thrived on that love! I was the best I could be with Alex for the first time in my life. I really just wanted to get it right for him. He forced me to change so many things that were negative in my life. He truly was a gift (and still is).

I find it hard to have more than one task on my plate per day anymore. I try to get multiple errands done but then complete exhaustion takes hold and I can't wait to get home. I have little desire to be social and the past week of cloudy, gloomy days made me feel quite comfortable. The sunshine only makes me feel like I should be doing "sunny day" things that I just don't have the energy to do. Zoe begs to go outside when she comes home from school and it is just beyond me at this time. I went to interview a counselor today and I really liked her. One of her recommendations was to get outside for a brisk walk for 10 minutes every day. I could not make myself tell her how improbable that was at this point. She also had me do three minutes of meditation on "just this moment". Her goal is to get me to "be in the moment" and be mindful of life. I told her Alex taught me how to do that but that lesson is fading as the depression creeps into my mind.

So, do you remember that my MAC crashed the day before Alex's memorial service? We found out yesterday that the data was not going to be easily recovered and today the estimate came in at $1,500 plus parts. I was devastated last night. I told Steve that I don't have Alex and now I don't even have the pictures I took of Alex over his life span. I know we will come up with this money and it will be worth it. It just seems like we can't catch a break.

To make things worse, Steve's cat, Sage passed away and was found today. Steve has had that cat for twenty years and I really thought this was going to send him over the edge. He said at dinner that if the last few weeks had not been what they were; then he probably would have taken the news harder than he is. In comparison to his son's death, Sage's passing is a piece of cake especially since they shared so many important life moments together. So the question of the day is, "WHEN WILL WE CATCH A BREAK?"

I know better than anyone that it can ALWAYS be worse and to be grateful for the blessings in life. It's just been a very long stretch of bad times for this family. Saturday was the one year anniversary of Steve's father's passing. So perhaps you can see why life has been so hard lately.

Well, now that I have brought you all down, I'm going to bed. Tomorrow is a new day and maybe just maybe getting this out of me and into the universe will offer some release to my pain and I will feel like being in the sun tomorrow.

God bless!
G

Thursday, January 17, 2008 - Gratitude

2008-01-17T10:59:00.000-07:00

Good morning,

I want to thank all of you who have expressed such kindness and warmth in your comments to this blog. It is absolutely amazing and really does make me think. I wrote the first paragraph of a draft of my life's story. Then I started rambling and then the doubt set in about whether any one would be interested in such a story. I hope to just get it out then let someone else make that determination. I also want to write about Alex's story and I have a few other ideas for some books I always thought I'd like to write (and read). Wish me luck, courage, clarity and conviction!!

Zoe goes to see Alex's play therapist today for the first time. I am looking forward to her having an outlet for her emotions other than growling at people. She especially likes to growl at Nonnie. I don't know if I should discipline her on this or realize that Nonnie is a safe person for her to growl at (express herself) without repercussion. We'll see!

The 1st part of this week was horrible for me. Steve and I went back on our Slim 4 Life program and had to do this "restart" on Monday and Tuesday that set me off into a piss poor mood! I'm not drinking alcohol and now that I have gone 3 days without it, it's okay but believe you me I wanted some damn wine!!! I lost 8 pounds those first 2 days and Steve lost 4 (he did not wear good "weighing in" clothes, in my opinion). So hopefully the weight will continue to come off.

My first therapist interview is next week. I really don't look forward to this but know it is a necessary evil. I'm soooo much better at stuffing feelings (and myself) than working on all of my baggage.

Okay, I really just wanted to thank everyone for everything. You can't imagine the incredible gestures of support that we get daily. It is so wonderful. This is a good world and there are very nice people in it! Thank you all for reminding me of that!

I have lunch and coffee appointments with some of Dr. Foreman's staff in the next week. I really do want to find a way to put them on a beach with absolutely nothing to do!! Wish me luck!

Okay, gotta get! God bless and hugs!
G

Monday, January 14th, 2008 - Shock Fading . . .

2008-01-14T09:09:00.000-07:00

Good Morning. The past few days have been very difficult ones for me. I believe that the shock of Alex's passing is fading and the sadness is setting in. For some reason, Friday was a horrible day for me. I spent the morning at the computer, attempting to get some order back in our lives and by 11:30am was utterly exhausted. After picking up ZG, I went to sleep and rested for quite a while. The tears come at the drop of a hat. There is no known trigger except my own thoughts. I am having a hard time fathoming living the rest of my days without him in my life. AS I said before, being a mom and being Alex's mom, is the best thing I have EVER done in my life. It brought me so much happiness and joy not to mention pride. I was one of THOSE women who loved being pregnant because I knew motherhood was going to be grand (and I never had morning sickness)! How do you go on without your joy, your happiness, your pride, your heart? I just don't know. I know Zoe brings me great joy and luckily for me her strong will does not allow me time to wallow. When she wants attention, she gets ATTENTION!!! If you have ever met ZG (or any two year old girl with a mind of her own) then you know what I mean. I love her so much. Bedtimes have been difficult the last few days. My brother-in-law was in town on business, and ZG was sleeping in our bed. We have a collage of Alex and Zoe pictures, portraits and drawings on our wall (it was the one at the memorial service). Saturday night after looking at this collage for a while, Zoe wanted to sleep on the floor (the only time ZG slept on the floor in our room was when Alex was very sick and my sister's family was in the nursery) and was very sad because she wanted "her Alex back". I echoed her sentiment and we had a soft cry together. Yesterday she talked about Alex quite a bit too and all I can do is empathize with her. Steve is also going through this new "realization process" and therefore has been emotionally exhausted after working all day. This past week we had very little communication except about "household minutia". I found out through the week that he was planning a guys' night out (normally fine) via a third party; then he started doing other little things that made me feel very lonely and unwanted. Finally by Saturday night, I was fed up and had to leave the house. I left my mobile phone and headed to the bookstore. There I purchased a journal and pen and started writing a letter to Steve. I then just wandered around the bookstore browsing and thinking and not thinking. It was really great and quite cathartic. I never knew how popular bookstores are on Saturday nights. I am pretty sure I will do that again. It was fun and I had a gift certificate so it was cheap too!! Anyway, my demeanor Saturday night and Sunday morning revealed that I was still irked and Steve wanted to talk about it. I told him about the letter and he asked to read it on his way home from the airport (to drop off Blake.) It took him several hours to return and we had a very good, poignant, honest talk when he did. Nothing is resolved yet but a plan has been put into place. So wish us luck. You see it is just too hard to be there for someone else, focus on work or child rearing and be emotionally available to a grieving spouse all in one day or as we found out in one week. This is not going to be an easy road for our marriage, but Steve and I do love each other and are at least quite willing to do everything possible to make it a marriage we both want. So last night I had this dream, at the very end of it was a woman running around like a mad person. She was caring an extraordinary large piece of luggage with stuff hanging out of all sides. I was taking care of Zoe in the dream when this woman was running around us, but a therapist once told me that some dream theorists propose that we are every person/thing in our dreams. So what does this tell you? I'm carrying around a lot of emotional baggage and feel out of control? Nail on head!!! The image in my mind is pretty comical so I have to laugh at myself and wanted to share this with you all. Well, today is the eight year anniversary of my and Steve's first communication. You see we met on match.com. I was in the first day of my free trial and he had been a member for a few months. My login was Buttercup and his was Montague. I told him about my love for Colorado (was in OKC at time) and he invited me to come play in the mountains with him! At this time I believed fairy tales and "falling in love at first sight" were rude fantasies to put in little girls' minds but after meeting Steve and spending just a few days with him; I had to shut up on that opinion! By April, I was driving to Colorado with a carload of belongings and one year later, Steve proposed (on this day) and in August we were married. We bought our home in December and Alex was born the following October. Good story huh? Since that time, we have met several couples that met over the Internet. It seems to be the way of the future! So far today is starting off okay. Wish me luck for the rest of the week. I have appointments set to start interviewing therapists next week. Love, hugs and God bless! G

Tuesday, January 8th - 5 weeks without Alex

2008-01-08T08:15:00.000-07:00

Today at 11:45am will mark the five weeks without Alexander in our lives, physically. I really don't know what to say about that except we still count the days and miss our precious boy so very much. Physically I am ill with "the crud" that is going around town. Mentally, I am a wreck too. I absolutely can't sleep. I went 22 hours without rest (and tried) last Friday night. Even NyQuil did not help me out two nights ago. My heart races for absolutely no reason and my mind fights the deep depression that is lurking in its corners. Feeling ill does not help this battle, I must say.

Zoe Grace is having a difficult time readjusting to her school schedule. She is like me in that she is a night owl by nature and yesterday's wake up call really threw her body into shock! She came home and slept from 6p til 7a with an hour awake during the night. During that hour she changed her pj's and pull up and talked and talked to her daddy. I was trying desperately to stay asleep.

I'm still working on the goals (not resolutions) I set for 2008. If I could only figure out what I want to "do" for the rest of my life, I know some peace would come to my mind. Does anyone know a good "career coach"? I know I want to wake up and look forward to the day and bookkeeping NEVER did that for me. I love and miss my former employer but have yet to make contact with them to explore any possibilities of my return. Steve says it is "too easy" and is encouraging me to find my "place". I don't know if he is right or wrong but I do know I don't want to fall into old patterns and lose the "moment" that Alex taught me about every day.

Okay, I better get. I feel like S&*T! The docs were booked yesterday morning by 8:35am so Linda and I will go in this morning. I need to feel better and to sleep. I also need to get this fire hazard of a Christmas tree out of my life! My sister slipped on some sunken ice on a bridge in Breck last Monday (her 10th wedding anniversary) and broke her arm at the shoulder. She was (and is) in a great deal of pain so ZG and I went to the mountains to help her out last Thursday and Friday. Then I came home sick, so my tree is still up. Gees Louise!

I hope your day is a good one, if it is not; then make it a good one (for me, please)!

Love and God bless!
G

Tuesday, January 1st 2008 - New Year

2008-01-01T09:16:00.000-07:00

Good morning. Well here we are in 2008. 2007 was quite a year. Steve is ready to slam the door and seal it shut and throw away the key. Personally, I don't feel the same way. 2007 taught me a great deal and changed me forever. I know I have to embrace this past year, learn from it and grow to be the person my soul so longs for me to be. I woke up thinking about all of this and here are some goals I have come up with so far. Please note they are not in any particular order.
- be kind and gentle to myself and others
- take a moment and be sure that I reflect and respond to the "intent" in mine and others' words and actions
- be mindful of my body's needs i.e. - good nutrition, exercise, sleep, work, play, sex, meditation and "me time"
- be generous with the love and joy Alex so easily expressed to the world (since I'm not Alex this may be a hard one, but I'll give it a shot)
- finally get IT; that we are all only perfectly imperfect and mistakes are golden learning opportunities and a necessity of life
- recognize and reject invitations to the old, destructive ways of being, thinking and living
-get in touch with God, my inner self, my purpose and my mission
-work to put Dr. Foreman and his team on a beach twiddling their thumbs because they have nothing to do!!!!!!!
-find joy in every day, laugh, laugh and then laugh some more
-build new friendships and keep existing friends close and in my life with kindness, time and generosity
-teach Zoe about the world and learn from Zoe about the world
-work with Steve to build a marriage we both need and desire
-walk my dog daily!!!
-continue to learn from Alex about love, life and purposeful living!
-let my house get messy with dishes in the sink and everything and LOVE the free time I have because I'm not cleaning it!!!
-stop using retail therapy as a coping mechanism and start be responsible about money and savings.
-get rid of stuff we don't use or need
-get this house radon tested!!!!
-Read more!
-Listen more!
-get thank you cards out to everyone that has been so generous to our family in the last 18 months!
-get into therapy that works! (or not, if I'm successful at all of the above, then I may just cure myself!!)
-Smile more!
-Get and give more hugs!!
-Be kind and gentle with myself and others (I know this is a repeat, but it is very important)!!!

I think I could go on forever with this list but let's be realistic shall we? So everyone wants to know how ZG is doing. She has not lost her spirit and spunk. She does exhibit some real anger at times and will even pinch herself if she gets very frustrated. One day she came in and said to me "Mommy, where's Alex, I lost him?" over and over. When we were leaving OKC and buying snacks for the plane, Zoe found gummy bears and wanted to buy them for Alex. All I can do when things like this happen is say, "Alex is dead." We still talk about him alot and I hope that never changes. Overall she is thriving in her new found attention and quality time with Steve and me.

Steve has been sick since we got back on Friday. I started feeling kinda puny yesterday with a sore throat and stuff but not as run down as he seems to feel. The Xmas holiday was quite hard without our precious boy there to help celebrate. Alex got me a beautiful charm bracelet with four lockets (two tear drops and two hearts) and a flying bird. I wear it everyday along with the "beads of life" necklace from TCH. Alex got his cousin, Evan, a skull cap with a glow in the dark design on it. I can't remember if the design is spider man or a skull and cross bones. I still don't know what he got his "girlfriend" Katharine, but I'm sure I'll find out soon.

Being home has been VERY difficult. Alex is in every particle of this house. Last night as Steve was looking for a lost shoe, he found some of Alex's toys and his water bottle under our bed. That kind of stuff is hard to take. It just reminds you of the hours upon hours we played this particular game with Alex and how many times we filled that water bottle and it sustained him through the night.

My heart still aches for Alex. I don't spend my days crying all the time but I do have crying episodes every day. Like right now.

Okay, live and learn and never give up! Or "Keep moving forward" as they say in "Meet the Robinsons" movie.

God bless and big hugs!

Love, G

Friday, December 21st - Getting Harder

2007-12-21T09:29:00.000-07:00

So we have moments of "normalcy"; moments of confusion; moments of distress; and moments of woe and despair. I look at the Alex and Zoe's last Christmas picture taken November 2006 in which they are standing, holding hands and smiling for the camera. That seems so long ago and far away but also just like yesterday. Oh how I long for Alex to be a part of our holiday. It's just too hard to do this without him.

There is no refuge either. I can't go out. I can't stay in. Yesterday his fingerprints on the backseat car window made me weep for him. I want to hear his sweet voice. I want to make him oodles and oodles of noodles in a river of sauce with a mountain of cheese on top. I want to hold my baby boy. I want to see his beautiful face and tell him how much I love and cherish him.

Tonight we will have our "Christmas" here. Zoe is getting an "Alexander Girlz" brand baby doll with brown hair, brown eyes (just like her). Nonni got her a doll set including a baby rocker, high chair and stroller. I also got her a sock monkey, but I can't find it. I can't tell you what I got Steve since he reads the blog. But it is something he has asked for and will enjoy, I'm sure.

This week has been very difficult. I'm afraid it is not going to get any easier either. I'm glad we are leaving town but also dreading it. I just hope I don't ruin Christmas for all of my dear family and friends. I try so hard to remember Alex's lessons. To enjoy every moment and to be present in the moment. To love and smile. To play no matter how difficult it might be to do so. To listen to music that you love and dance whenever you can. To give and get big hugs. To say "I love you" to everyone you care for every time you see or talk to them. To enjoy the sun and the moon and rainbows. To ask for help when you need it and never do anything you really don't want to do. To eat what you love when you want it, but not to be gluttonous about anything. To honor the day and be grateful for everything in your life, even the bad stuff that makes life worth living!

I think I could go on forever, but I'm feeling better now, so I will stop. Happy Holidays to you all. I love you.

God bless.

G

Wednesday, December 19th - Good Morning After All

2007-12-19T10:15:00.000-07:00

Collective Soul has been one of my favorite bands for a very long time. As I was listening to their new album "Afterwords" I felt as it was written for us. The song below says how I feel many days and I wanted to share it with you. I highly recommend the album as well!

"Good Morning After All"

Yeah you give up some days
When the tears they must flow
But God is always your strength

The only strength that you know
Now everything starts to fall in place

As you wake just to crawl
Still you say good morning after all
Yeah you stand just to fall
Still you say good morning after all

Yeah you questioned this life
Sure you wondered about love
But you swear there's always hope
Always hope from above
Now everything starts to fall into place

[chorus]

It's just another breath
It's just another breath you say
It's just another step
It's just another step today

Monday, December 17th - This is Too Hard

2007-12-17T08:21:00.000-07:00

Thank you all for your prayers and kind words. I love to read how Alex's life has made the world a better place. I too do not know where the energy comes to face each day. I have to force myself out of bed in the morning and into bed at night since sleep is not coming easily to me. Alex's presence is all over the house. I think he is playing with us in his very special ways. I miss him so much. And now I am crying.

Last week on the ABC Nightly News program, Joe Biden was being interviewed. He lost his wife and daughter in a car accident early in his life. His 2 boys survived and he talked about loss. To paraphrase his words he said "suicide is a rational option, if the love you shared was as great and profound as you believe then why would you want to re-establish your life?" (to hear the interview in its entirety go to www.abcnews.com and search "joe biden"). I have to say that living without Alex is too hard at times but I don't want to check out. I just want Alex with us again and always. I miss his smile and his laugh and his big brain! I want to hold him and stare into those beautiful eyes; watch him sleep and play a game with him. My heart has never known unconditional love before Alex and Zoe. Alex was the first to show me how grand love really can be. I knew when I met him that my life would never be the same again.

Mr. Biden also talks about feeling guilty when you realize that you want to live. He talks about his father telling him "get up, get up". His father told him that success is not measured on how many times you are knocked down but how quickly you get up. He also says you have to focus on what you have. I know this is an absolute truth. So many of us (myself included) focus every second of every day on what is wrong or what we don't have that would make the next second better. Well the truth (as I see it) is that when you get that "thing" your life is not better, because you have programmed your mind to always be searching. Each of us search for something different but the result is the same - feeling unfulfilled, unloved and empty. I have a huge hole in my soul and I know that the only way to recover from the loss of my dear boy is to finally and wholly love myself.

It always boggles my mind to hear so many people talk about me with such admiration. I truly feel that I have done only what any parent would do and that is love my children and do the best possible for that day. That does not seem extraordinary to me. I am starting to listen more and learn from you all though. So many of you can't be wrong, huh? So, with baby steps, I am going to try to feel Alex's unconditional love for myself. Wouldn't that be a grand way to go through our days; if we loved ourselves unconditionally and therefore knew that the rest of the world was hurting just as we hurt and love and kindness were the answer to the crisis at hand? Wow! what a concept!!!

Okay, so Christmas is coming and I realized yesterday that no where in our media, advertisements, or daily lives do we talk much about the true meaning of Christmas. It is no longer "correct" to do so. I feel our children only know it as a day that they get gifts and that is it. I'm not saying that everyone should go to church, not by any means. But shouldn't we talk about giving and love and the reason for Christmas? Shouldn't we teach our children about the origins of this holiday? I realize this would be different for every family and I also think it would be grand if we all understood Kwanzaa and Hanukkah too. Perhaps learning how this holiday is celebrated all over the world would be a better idea than just emptying our pocketbooks, creating more debt and filling our homes with stuff. Okay, I'm done. Please forgive my soapbox rantings!!

I remember our second Christmas with Alex in 2003. Alex was one and Steve and I had had a very difficult year financially. We only had money to buy Alex one gift. I thought long and hard about what I wanted to get him. Since he loved music so much, I decided to buy him a kid size piano. Tuesday Morning advertised one and on the day the store opened, I got up at the crack of dawn, poured some coffee and drove to the store. I wish I could share the feeling of joy and happiness I felt that morning. I was so excited as I stood outside the doors waiting for them to open. As I drove home I thanked God for helping understand that I was blessed to have such a beautiful family and that the love we shared was much more important than the giving of gifts. I still think of that Christmas as my favorite.

This year's Christmas is not something I am looking forward too though. We will be with family and I am trying to focus more on that than Alex's absence. I'm pretty sure though that I will be overcome by sadness and grief. The question is how long will it last and will I be able to pull myself out of it? I'm sure I will. Zoe Grace absolutely demands my attention and she constantly reminds me of what I have still to live for.

Well, this is too hard but with your love and prayers we'll make it through.

God bless!
G

Friday, December 14th - The Blur Continues

2007-12-14T16:27:00.000-07:00

First I want to thank you all for your prayers and kind words of support and love for Alex and our family. I know it has made a difference in our home. It is absolutely awe inspiring how Alex has affected this world in such a positive manner. I am so amazed that our little boy could accomplish so much in such a short period of time. He is such a Super Hero!!!

So, this last week and a half has been a blur. I remember lots of hugs, lots of uncontrollable wailing, physical pain, a beautiful ceremony, flowers and an unexplainable feeling that I have lost something very important and just can't find it. It's like a panic. Where is it? How can I live with out it? What do I do now? Losing Alex's presence in our daily lives has been traumatic. I walk around the house doing stuff until the grief grips me and all I can do is hold down the couch. I have watched many movies the past few days and don't remember much about them. One I do remember was "Catch and Release". It was filmed in Boulder, CO and to honor her dead fiance, the main character creates a "peace garden". I thought that we should create a "hope garden" for Alex at the Children's Hospital. Wouldn't that be grand? Something really inspirational and fun for kids. I also watched "Edward Scissorhands" and it just occurred to me that we could have those fun-shaped hedges and trees like in that movie. Children should have a place to go and learn that there is always hope. (Is there always hope?)

You can't imagine how much physical pain I was in last week and the first part of this week. The physical manifestation of my grief and loss was acute and engulfing. A dear friend bought me a hot stone massage that worked wonders for me and I know has expedited my recovery. If you have never had a hot stone treatment, GO GET ONE!!! Coldwater Creek Spa is where I recommend you go too! If you can't do that then get an "essential pedicure" and just relax!

At Alex's service many incredible words were spoken. I remember our neighbor, Kevin, saying that Alex accomplished something every person in the world strives to do and that is to impact the lives of every person they meet. I thought that was a profound statement and very true. Of course, Alex has changed the lives of people he has never met too. That is the wonder of his truth, spirit and love for life.

Alex was cremated on Wednesday. It was my birthday and a very hard day for me. The dogs had gone on a rampage the night before and I found two of the gifts Alex chose for Xmas gifts for his family. Alex absolutely loved flashlights so he got his dad this really cool lantern. He also loved baths and so he got ZG some bath tub letters and numbers. Knowing that he picked out these gifts and also knowing that they reflected his love for his family brought me to my knees. I still can barely contemplate Christmas without Alex. Each day I feel his absence. I also feel his joyful spirit at times too.

Okay, that about does it for me. Steve seems to be handling things okay. Unfortunately, his good friend moved away this week and I worry about him sinking. Zoe Grace asks "where's Alex? Alex in Oklahoma? Mom, I lost Alex?" about once or twice a day. She really misses him and we just keep telling him "no Zoe, Alex is dead." That is what all the books say to say. They don't say where the well of strength is to say it though!!

God bless!
G

Wednesday, December 5th - Pain, Agony and Info

2007-12-05T17:51:00.000-07:00

Alex passed very peacefully in his father's arms. He awoke yesterday morning with a very painful headache and swollen forehead and right eye. Tylenol did not help and since Alex was crying due to the pain, we started the Dilodid IV. Due to many factors, it took hours to get Alex relief but he was free of pain eventually. His last word was "music". He wanted to change the tv channel from his shows to the "massage music" on comcast (soundscapes).

Alex passed at 11:45am. After that we took him to the master bedroom, bathed him and oiled his body with massage oil. We changed his clothes and put on his Spider Man pajamas. Then I broke down completely and utterly. Then I stayed with him kissing and holding and just looking at his beautiful face. The swelling was gone and he looked so lovely and at peace.

By 3pm the morticians were here to take him away. Steve carried him out the back door. The sky had this eerie yellow tint to it and for the first time all day, Alex looked dead. I think the hardest thing I have ever done is to watch him leave our home for the final time. I broke down again in the back yard screaming at the top of my lungs.

Steve and I were able to compose ourselves enough to talk to Zoe. She went in and said "good bye" to Alex then went to watch Diego. She seemed very sad and mad yesterday and would not sleep until I came in and laid down with her. I woke up at 4:30am in terrible pain. My entire body hurt. I felt as though I had been in a horrible car accident. I got up and took some med they gave me in the ER for pain. Next thing I know it was 7:30am and I needed to get up and get ZG ready for school. I have no idea how I got out of bed but I did and when Nadine came by to pick up Zoe, I was laying on my back in the playroom with Zoe laying on top of me. As soon as she was out the door, I went to lay down in our bed. All morning I felt as though my limbs were made of lead and the pain was excruciating. Finally, I was able to get up and take a divine bath downstairs. All the ladies did an incredible job at making me comfortable. A

Since then I have been to the funeral chapel and made arrangements for services. The fact that I just had to pick out my child's casket is mind numbing. I feel like a zombie as I write this now. I asked Steve this morning if I was still Alex's mother. Since Alex is no longer here to nurture, nourish and hold then how do I call myself his mother?

Here are the details of the services for Alexander Michael Kasnoff:

Friday, December 7th Viewing/Visitation from 5:30 pm to 8 pm at Moore Howard Funeral Chapel; 4345 West 46th Avenue, Denver, CO 80212; 303.433.6425; john.demers@sci-us.com.

Alex's memorial service will be held on Saturday, December 8th at the same location at 10am.

God bless you all. Hold on tight to one another and make sure everyone you love knows how you feel today.

G

Wed Dec 5 - Information

2007-12-05T10:59:00.000-07:00

We'll have more details after 4:00 today so until then: visitation will be on Friday and the memorial service will be on Saturday at the Olinger Moore Howard Chapel, 4345 W. 46th Ave.

The family asks that memorial donations be sent to:
Neuro Oncology Research Fund
Children's Hospital
13123 E 16th Ave
Aurora, CO 80045
Attn: Amy Wilson - Box 115

This is Dr. Foreman's facility and your support will help Alexander's friends. Thank you!

alex is gone

2007-12-04T11:56:00.001-07:00

Tuesday, December 4th - Amazing Kid

2007-12-04T08:02:00.000-07:00

Thank you all for your comments. I just got a chance to read them this AM. I did not leave Alex's side much at all yesterday and he is resting now. Alex is absolutely AMAZING!!! He fought so hard yesterday. He was blue at 10:30 AM and fought back from that. Then his blood pressure dropped into the low 40's and we all started saying our good byes. I called my sister and when her husband, who can magically make coins appear from Alex's ears, said "watch those ears"; Alex's eyes opened and a huge smile came over his face. He then woeke up and played Spider Man Wii with his dad!

We are able to keep him comfortable with the robinul (dries up the fluid in lungs) and the Midazolam (anti-nausea, anti-seizure, and anti-anxiety med). When the Robinul stops being able to help him with the fluid in his lungs and he starts gasping for air (most likely scenario) then we have some Dilodid (morpheine derivative) to give him so that he won't feel like he is suffocating.

So the hospice nurse says this up and down can go on for days. I'm sure I can take it but I don't want to. I hope you understand what I mean by that. I will have to find inner resources that are currently unknown to me to survive more days like yesterday.

Both my sister and sister-in-law arrived last night. We are so grateful to have them here! I plan on using some of their resources as well! To top all of this off, our dog (puppy) Roxie is very ill. She has been quite mopey since Sunday night and we all thought it was just a dog's way of mourning. But she woke Steve up crying and whining last night. She has a vet appointment at 10:30am. I hope this is an easy fix (and cheap one too). We love Roxie so much. She has to be one of the sweetest dogs I know.

Okay, ZG needs to get to school. Love and hugs. Keep those prayers coming!!!

G

Monday, December 3rd - Prayers Please

2007-12-03T08:53:00.000-07:00

Good morning. Alex is not doing well. Last night he became very frustrated because he could not drink or eat. He even asked that we do his "thrush swab" so he could eat his dinner. He hates his thrush medicine! Last night he also needed lots of suctioning. It sounds like his lungs are full of fluid. My worst fear may be coming true. That Alex is suffocating! If he has to go, please Dear Lord, don't let him suffer!!! This morning he is on O2, on the couch and resting. His eyes have not opened in the past hour and he no longer has control over his head, legs and his left grip is very weak. It is very difficult to understand him because it sounds like fluid is stuck in his throat. It just comes out very weak and girgly.

Please forgive me for not calling you if you are on our call list. THis is the most time I care to be away from Alex.

Alex had an absolutely wonderful time at the Make a wish Holiday store! With a great deal of effort, my old boss delivered his Power chair to the hospital and Alex was off!!! He loved going fast and doing spins in his chair. Everyone noticed the beautiful smile on the beautiful boy in the fast chair! It was a spectacular time!! Thank you Jerry!!!! You made this possible!!

Please pray for Alex.

God bless!
G

Thursday, November 29th - Update

2007-11-29T10:28:00.000-07:00

So we have not had any alarms during the night lately. Alex does seem to need the O2 when he is awake more than ever though. But that is okay! Yesterday Steve came to Alex's OT/PT appointment with us. Alex had a good time kicking blocks and bugs onto his Dad. We took some great video. Alex also has a yeast infection in his penis and thrush in his mouth. We started treatments yesterday and hope that his swallow will be better when the thrush is gone.

Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.

Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!

So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!

I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!

Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!

Love and many thanks for the powerful prayers. Keep it up!

G

Tuesday, November 27th - Update

2007-11-27T08:29:00.000-07:00

Good Morning! What a beautiful, sun-filled day! Alex had his second "no-alarm" night last night. He is currently battling his cousin on the Wii Spider Man game.

I do have a request to make. Since Alex (and I) get so overwhelmed with a full house, please call before you stop by for a visit. This way we can make sure everyone has quality time with Alex.

God bless! love and hugs!
G

Monday, November 26th - Update

2007-11-26T16:38:00.000-07:00

We went through the night without any alarms on Alex's pulse ox. This means his readings did not go below 80% all night. We think that is probably due to the fact that his Midazolan was increased about an hour before bed time. This morning he seemed pretty out of it and we are sure we have seen a few petit mal seizures (space out-like) today. His pulse ox dropped into the 70's and he was very out of it at 3pm. They say these small seizures will lead up to a big one.His hospice nurse said his blood pressure was pretty good and his lungs sounded okay, but he is definitely slowing down. She would not commit to the 72 hours instead she said "no one knows." Steve and I had to discuss what we would do in the case of coma, etc.

So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.

My sister plans to leave tomorrow morning with her husband and son.

God bless you all for your support and beautiful messages.

Gotta go!

G

Sunday, November 25th - 72 Hour Notice

2007-11-25T22:47:00.000-07:00

So Alex had a "seizure" last night that lasted about 20 or 30 minutes. During this time, despite being on his oxygen, his pulse ox dropped to the high 50's and it was with great difficulty that he was able to get it to a reasonable concentration. Steve and I were completely scared but calm at the same time. I have never been so happy to see the sun shine on Alex's face as I was this morning!

Today, Alex's pulse ox has been around the 80's without the o2 on and reasonable with it. His mood is fine, but he is definitely slower. His smile still lights up our world!

Steve started off the day contacting dear friends and family and giving them 72 hour notice. I asked the hospice nurse if she thought this was a reasonable time frame (forgive my matter-of-factness here) and she agreed with Steve's estimate.

Due to last night's seizure, my sister and her family decided to stay at least for one more day. Our house was full of friends and family this evening but I could not get out of my grumpy mood. Then Steve took over the grump role and my sister and I put the kids to bed.

If you care to communicate with us and don't talk to us on a weekly basis (and maybe if you do), we prefer that you post a comment on this blog. Otherwise, please allow us the time to be with Alex. I will do my best to keep the blog updated.

Your prayers are most welcome!

God bless!
G

Friday, November 23rd - 24 hour watch

2007-11-23T19:36:00.000-07:00

While we were painting pottery today, Alex was holding my hand as I squeezed the writing paint so he could spell out his name on his vase. Very soon after we started the "A" Alex's hand just started going up and down, up and dooooooown, slower and slower. When I glanced at him, his eyes were glazed over and then his head jerked and you could tell he had "spaced out" for a while. Within 10 minutes he had a raging headache and we had to pack up and head home. ON the way, I figured out that Alex had had a seizure. When the hospice nurse arrived she confirmed my fears. Alex must now be under observation 24/7. We have to be aware and available to react if anything else should happen.

Alex is awake and eating like a mad man right now. It seems that the 40% increase in his Midazolam has helped his appetite. I'm completely freaked out now and so very grateful that my sister and her family are here. We all plan to take shifts this evening.

Okay, more later! Think positive, longevity-inspiring thoughts!

Love, G

Friday, November 23rd - The day after!!

2007-11-23T11:18:00.000-07:00

Wow! What great comments! Thank you for your notes. I absolutely love to hear how our situation helps others stop and take the time to appreciate the gifts in their lives. Alex is such an inspiration to so many people. AS he (and every child) should be!

Thanksgiving brought us a house full of family and friends; much laughter; some great food and the time to just be! Alex had a pretty good day yesterday. He always perks up so much when his cousin(s) are around! We spent so much of the day in the kitchens (had to use the downstair's one too) that once I was able to just sit and snuggle with Alex I felt so blessed. At one point, when Alex was not doing so well, the horrible thought that this may be his last Thanksgiving grabbed hold of me and I began to cry. I was immediately hugged and reminded that he is here now and given a glass of wine. I love my family and friends!

Yesterday we were not able to be around all of our loved ones, some due to distance others due to the passing of life; but via modern telecommunications and fond memories brought about by old recipes being resurrected we felt the love and warmth of so many souls. It was a glorious day!

So today we hope to go paint some pottery. Tomorrow, visit the new Modern Art Museum our neighbor just "gave birth to" (as Steve puts it) then go watch some bedlam football at a local alumni watch party in Lodo. My sister's family will head home on Sunday but I don't want to think about that now.

Okay, I really just wanted to thank those who posted some incredible comments. I hope each of you have a wonderful holiday!

God bless!
G

Monday, November 19th - There he goes!

2007-11-19T23:00:00.000-07:00

Hi everyone. Well, things are somewhat the same as the last post but fear is battling with my hope and faith causing some horrible nightmares each night. You see Alex's heart is beating at about 160 beats per minute. A normal five year old's heart beats about 80 or 90 bpm. If Alex were an adult this high heart rate would indicate only a few days left but since his heart is young and strong then all we really know is that his body is not utilizing the oxygen well and his heart is trying to compensate for the deficient. Speculation is that the tumors are causing his lung function issues and could very well be a part of the heart rate issues. We know his paralysis is worse on his right side. His right eye has pretty much stopped being able to follow a moving object and soon we will have to restore the moisture (tears) it is not producing for him. All of this is happening but Alex's smile and incredible spirit still light up our days!

On Sunday, using the ramps Steve and his friend Mark (visiting from Idaho) made on Saturday, Alex was able to leave the house of his own volition in his new power chair! You can't imagine the joy in this little boy's soul. It was absolutely tangible! His power chair came with five skins of different colors and Alex was told to put on the red skins when he wanted to go fast! So after he made it down the ramps he asked for the red skins! Then we headed out into the alley and around the block. There we found our neighbors and Alex's best friend enjoying the absolutely incredible, warm, beautiful day! We all headed out to the park a few blocks away with dogs and Frisbee in tow. Alex had a great time going fast and even asked Esther for a race on the grass! I don't know who one but who really cares! It was so weird for me not to know where Alex was at all times. I just am not used to his new mobility yet. So we played Frisbee, watched dogs run and did some cartwheels. It was a glorious time! Alex's stomach then started bothering him and he wanted some O2; so we headed home. Alex was not even willing to drive the power chair on the trip home. The rest of the afternoon was spent comforting him and doing anything we could to help him feel better. Alex had to take a bath after his nap at which time we noticed his Broviac line (which he vehemently wants out of his heart) had been pulled out of his body a few centimeters. Luckily, Alex's hospice nurse said it is still okay but I must say all of my nightmares last night revolved around this situation.

So, we are just a few days away from Thanksgiving. I have so much to be thankful for and so much gratitude for it all. I just wish this nagging little voice in my head would stop saying, "this is Alex's last Thanksgiving, will he make it to Christmas?" I've tried to ignore this voice but it is relentless! Then I realize that all I really have is this moment and it really helps me get to the next moment. So here we are again, just striving and thriving from moment to moment.

Okay, I'm exhausted writing all of this inner turmoil stuff. I really just want to focus on the holiday and the fact that my sister's family will be here very soon. I hope each and every one of you know how grateful we are to know you are out there; praying and hoping and crying with us. We love you and wish you a wonderful holiday filled with family, friends, laughter and joy!

God bless!
G

Wednesday, November 14th - Ups and Downs

2007-11-14T17:37:00.000-07:00

Good evening everyone. So I know when I have neglected you all when my friends call and start asking about Alex. I love to talk to my friends and so I reluctantly post this update. (that's a funny!) While we are on the topic of friends, I want to say that I have noticed a universal reluctance of close friends to discussing any events, thoughts, or life issues that are on the negative side. I just want to say, "CUT IT OUT!!" I am your friend in good times and bad and I don't want to be treated with kid gloves because Alex has brain cancer. It is not fair that I don't get to be your real friend anymore. Do you really think I want to hear how great things are with you? NO!!! I want to hear your shit and your irks and your frustrations! Please! Let me be a real friend. Don't take that away from me! Is that how I am supposed to treat you when life gets rough for you? Is it all about me? No! Let me be there. I really hope this message is received well. There is no one person that this is directed at. I think the natural tendency of kind people is to be kind and gentle but enough is enough! I'm completely bored, let's spice this up a little!!

Okay, done.

So Alex received his new "power chair" on Monday. He seems to really enjoy "having legs again". You should have seen how excited Zoe was to have her brother ambulatory again. She was absolutely giddy! When Alex went to bed Monday night he said, "this has been a great day!" He even asked if we could take Roxie for a walk on Tuesday. That did not happen, but it is on the agenda.

Alex seems to be "changing". His voice is softer and his drool is much worse. Today his feet and legs were quite cold up to his mid calf as well as his hands. He seems to be dehydrated for the first time since hospice care began but I must say this morning he was incredible! Alex had "evil OT/PT" this morning. He has been referring to it as "evil" because he gets to do bad things like throw leather bugs at his mom and Noni. He gets to kick large blocks and cylinders on us as well. This morning we had an upside down, backwards and opposite day! It was tons of fun driving to his appointment and pointing out the submarines, noodles and whales! Alex decided to stand on the platform swing today and knock blocks onto my back! This morning was really great. That is just how it goes around here. Up then down, then down then up! Flexibility and stamina are key!

So I am having a hard time believing next week is Thanksgiving. Were has the time gone. Did you know that today begins the 9th week of hospice care? These docs don't know anything!! Nonetheless, we have decided not to move forward on the MRI. The benefits just don't out way the risks!

Okay, dinner time and I need to get. Thank you all for your support! WE love you all!

God bless!
G

Thursday, November 8th - Sad day

2007-11-08T08:33:00.000-07:00

Good Morning. Yesterday was a very sad day in our home. Alex is doing well, but Steve's employer shut down the 25 million dollar project he has been working on for about a year and a half. Several of Steve's friends and colleagues have been laid off. Steve was one of the lucky ones who had his position redeployed. While we are relieved to have our family's income still coming in; we are very distraught for the others that were not so fortunate. Steve and I have been through a few bouts of unemployment and it is never an easy feat to overcome. My prayer today is that everyone that was laid off yesterday find their new place in the world in a timely manner and with as little hardship as possible. Please know that our thoughts are with you.

So Alex is having a very hard time lately with his swallow and nausea. It's so hard to watch him struggle to eat and drink and even harder to watch his nausea. When Alex is sick he needs to be suctioned and he struggles to breathe. It 's probably the worst part of our days. Of course it could be worse and we know that. Generally, Alex is in fine spirits and is enjoying his days. That is the most important aspect of all of this.

Yesterday, Linda and I did some Christmas shopping. It was very hard for me. No one knows what the future holds but my anxiety about planning for anything is very high at this point. The Starlight Foundation called yesterday and wants Alex to join them and United Airlines for a Fantasy Sleigh ride to the North Pole on December 8th. They require that the child be able to be away from his/her parents during the whole event which Alex can not be for obvious reasons. So the coordinator is going to try to get me on the sleigh ride so Alex can go. When I told Linda about the event she said, "well we just have to make it one month!" There is alot wrong with that statement and it really struck me that we can not take even one month, one day or one moment for granted. I thought I knew this but it is astounding how poignant the realization can be sometimes.

So make it a great morning, afternoon, dinner and bedtime today! Thank you all for caring about our family.

God bless!
G

Thursday, November 1st - Best Mom Ever!

2007-11-01T09:31:00.000-06:00

I hope everyone had a great Halloween. Alex took his cousin and sister trick or treating at the new hospital and got lots of candy. You should have seen ZG! She really picked up on the concept and just loved grabbing candy and putting it into her basket. At home, she would run to the door at every knock yelling "Twick or tweet, I do it, I do it myself!" Then proceeded to give out large handfuls of candy to each child. It was a fun day.

Alex had OT/PT yesterday morning and really ended up having a great time. Initially, he was upset because he did not get to sleep in but when it came time to throw the balls at my sister and me; he really perked up. We got Alex back on the Prevacid for his upset tummy. Hopefully this will help relieve his nausea or acid reflux. Last night Alex asked me for his super boot (brace). He said he wanted to stretch his legs and run around; so I got his shoes and boot on him and he stood up with his transformer and tried a couple of steps. He did not go far or stand for long but this is HUGE!!! Alex refused to walk yesterday at OT/PT and has not even looked at his transformer (walker) in over eight weeks if not more! Alex was upset when Evan left yesterday to go trick or treating with his other cousins. Alex has expressed several times that he just wants to run and play like other kids. So I think he thought about it for a while after Evan left and then decided to give a try. Steve and I were so amazed. Alex's strength, courage and perseverance is remarkable! I told Alex that we would resume his leg and arm exercises and keep working with the transformer for as long as he wants.

So, Steve and I went out Tuesday night for sushi. We really needed to reconnect as a couple and it was a very enlightening evening. One thing I learned was that Steve has been worrying about Alex's Pooh Bear for a year now. He expressed this to me and after some thought we decided to let Alex tell us what he wants. So when we got home and I put him to bed I told Alex a story about a little girl who was going on a trip but her brother would not be travelling with her. This little girl has a favorite doll and she is unable to decide whether to leave it with her brother or take it on the trip with her. I asked Alex what he thought she would do. He replied, "take it with her because boys don't play with dolls." Which makes way too much sense, so I went to story numero dos. So then the little girl was going on a trip and had a favorite tshirt. Alex asked if it had a flower on it and I said "no, it has a circle on it." So she has to decide whether to take it or leave the tshirt with her brother. Alex said "she takes it, but makes him a shirt just like it." So there you go. Out of the mind of Alex! Isn't that beautiful? I adore this kid!

Finally, I want to document something that happened earlier this week. First of all you have to understand that sleep schedules are completely off around here. So due to a long late afternoon nap, Zoe and I were up late watching a movie. It was 12:45am and I decided that we needed to go to bed. On the way though, I wanted a bite of Alex's chocolate bday cake. (This was a very yummy cake that spoke to me!) So as I was taking my little bite with ZG on my hip, she said "I want sum." So I begrudgingly shared my bite. Then I thought, well if she took some of that bite then I need another bite. Before you knew it she and I had eaten a whole piece of cake! I am the BEST MOM EVER!!!! I know I am not, but it was a fun moment in our lives and I just wanted to document it. Zoe and I went straight to sleep, in case you were wondering!

Okay, so no decision has been made on the MRI. Alex wants to have another picture of his big brain so he can see if the bump is gone!! I am even more fearful and really don't want to "be devastated again (as Steve put it)" so I just don't know. I am leaning toward not doing it right now but that could change. I still need to get information to make an informed decision with Steve.

Hope your day is a great one!

Love and hugs!
God Bless!
G

Tuesday, October 30th - Back to ER

2007-10-30T12:47:00.000-06:00

Hi there, first of all Alex is fine but his broviac line just split open during last night's flush and after waiting for an hour to hear from hospice that it would be another hour before anyone could get to him, we headed for the ER. Three hours later Alex left with an IV in his right arm. As scared as he was about getting a poke he never flinched or cried at all while getting the IV. He truly is an amazing child.

So today we headed back to the hospital at 8a to have his line repaired. Three hours later we leave with Alex's third line and flu shots for my sister and me. Alex appears to being doing as well if not better than the last time he was seen by the clinic staff. We are currently gathering information on the risks/benefits of having another MRI done. Steve and I need to make some big decisions and more information would be useful. So I'll let you know when we know our decision.

Yesterday my sister and mother-in-law went to visit the funeral home we have selected. It is a beautiful place right between Alex's two favorite parks. It is very close to home and I like that alot. Anyway, I could not muster the strength to go and actually enter the place so they bravely did it for me (us). When Stephanie left she told the funeral director, " I hope I never see you again." To which he "dittoed" the sentiment! I also had Stephanie and Linda pick up some black cloth to cover our mirrors if Alex should pass. I like this ritual alot and may even take up some more if the situation actually arises.

So I just wanted to fill you in. Love and hugs!
God bless.
G

Monday, October 29th - Happy Day!

2007-10-29T09:17:00.000-06:00

Good Morning! So Alex had a wonderful birthday MONTH thanks to all of you and yesterday was especially nice. At 5a, during a body shift in the big bed, I wished Alex a "Happy Birthday!" He said with awe in his voice, "today is my birthday?" To which I replied, "yes" and he fell asleep with a smile on his face. I got up at 7a to purchase party stuff and donuts! I never thought I would be happy about having a 24 hour Walmart nearby, but it came in handy yesterday. On my way there with the sun rising in a beautiful sky, I felt pure joy. I was so worried that Alex would not be with us on his birthday, but he is and that makes my heart sing. I just need to keep that feeling every day!

sunglasses, When I got home, Alex was awake and ready to open gifts. Yesterday he received SpidermanWII game and t-shirt; Lightning McQueen collector set and racetrack; Transformers t-shirt and movie; a case of silly string; a pirate's chest and a Shining Star Bear that allows Alex to name his own star! That is so cool to me!

All of Alex's friends that could make it with less than 24 hours notice, joined us at Go Paint! for a pottery painting party. Alex had a blast and it looked like so did everyone else. Unfortunately, after the two cupcakes worth of frosting, Alex was quite nauseous. We upped his meds and he did better later in the day.

This weekend was also full of some fun activities with dear friends. I'm ready for a day off!

One last thing, the other day, Alex said he wanted to wake up early to watch the sun rise because "that is the best part of the day." I thought that was so awesome.

Okay, have a wonderful day! I know I will!

Love and God Bless!
G

Thursday, October 25th - Most Important Things

2007-10-25T12:32:00.000-06:00

Hi Everyone, well yesterday was a very good day for Alex. The two days prior were not so good. Alex was very tired, took alot of oxygen and yet still had low energy. We think this was due to the increase in Medazolam over the weekend. Nonetheless, yesterday was a different story. The birthday party at Alex's favorite breakfast restaurant probably helped boost his spirits. On Tuesday, we made arrangements with the restaurant's owner and the evite went out. Alex had a five pancake cake with whipped cream frosting to celebrate the event. All of the kids were in costumes and Steve and I were dressed up also. I was Lady Guenevere and Steve was Lord of the Torridors (or something like that).

Alex got this incredible talking faux parrot that is still amazing us! And today he opened his Pirate kit and turned into a real pirate. Later today we hope to make it out to Build-A-Bear and use the gift card he also received yesterday. I can't say enough thanks to everyone that came on such short notice. Your support made it a very special party.

So Sunday is Alex's real birthday. He wants the house decorated again and since some dear friends are in town from Seattle and Santa Cruz; we are going to keep this party low key. Wish us luck!

So last night as Alex was fading into sleep he said the following:

"Having fun with friends; sleeping with you and Zoe and Grace (I'm pretty sure he meant dad) that is what is MOST important. Oh and watching my shows in the morning."

I just thought that was too sweet.

Okay, day going on, gotta go.

Love and God bless!
G

Monday, October 22nd - Six days and NOT counting

2007-10-22T10:16:00.000-06:00

Good Morning. Well it was quite a roller coaster weekend for everyone here. On Thursday night, Steve had a conversation with Alex about journeys. He told him how some journeys can be scary but when Steve goes on a journey he always has his family with him. He then told Alex, "You won't have to fight the bump forever." To which Alex responded, "I know". Can you say "Wow"?!?! What a mind blower that is, huh?

Okay so let's go to Friday night. Here's the bedtime dialogue as best as I can remember:

A - "Mom, I'm scared to go to sleep."
G - "Why baby?"
A-"Because, I'm afraid that bad dream will come back."
G-"Well you know bad dreams rarely come back. Can you tell me about your bad dream?"
A-long hesitation
A-"Well, I was in the hospital and there was a can with a string. I pulled the string and out came a bunch of cigarettes and I was really scared."
G- pause "Oh baby, I'm sorry you were scared, but I'm confused. What about cigarettes coming out of a can scared you?"
A-"There was a button and I pushed it and I was dead."
G-(no idea what I said, but I tried to comfort him)
G-"Alex, what did it mean to be dead?"
A- long hesitation
A-"I was in the ER and I got pokes and shots and I was really scared."
G-"you mean just like the last time you went to the ER?" (Last ER visit was after he stopped breathing after the morphine and had to be revived by paramedics and then we went to the ER in an ambulance. He was put on an IV and stayed for several days, which was last hospital visit."
A-"yes".
G-"Well, Alex your dad and I are working very hard so that you never have to go to the ER again and never have to have any more pokes or shots. That is why we have a team helping you fight the bump."
(This was followed by some more comforting words, songs etc.)

The bedtime continued to be restless but I was in excruciating pain from my shoulder and completely fatigued by this time, so Steve stayed with Alex and ZG and I slept in the nursery (the master and nursery doors are inches from each other). I awoke at 1:30 to the sound of the suction machine and Alex gagging. I came in and looked at Steve and knew that he had not slept and that the night so far was very difficult for him and Alex. We finished with the suction and Alex told us his tummy hurt, so we gave him a Tylenol suppository for the pain. He laid back down and Steve got up and whispered in my ear "Watch over him" then left the room.

I watched Alex toss and turn with pain and anxiety until 2:30am. I then got up and told Alex I would be right back. I found Steve on the couch and told him that Alex was not sleeping and we needed to call the nurse. She picked up immediately and since Alex was having so much trouble with his secretions, told us to give him more Robinul and that she would call back in 45 minutes. So we did that and as I was returning the meds to the kitchen, Steve and Alex started making shadow animals on the bedroom ceiling. Pretty soon, Alex was a bunny going "boing, boing, boing" all over the ceiling and Steve's hand was a monster which was always defeated by the boingy bunny. We were laughing so much. I then had a moment of genius and went to get the 10 inch Spiderman action figure Alex had received that afternoon from Leo F. (a son of one of Steve's friends, that Alex has never met). Anyway, Spiderman was soon battling Alex's prayer bunny (stuffed animal that says the "now I lay me down to sleep" prayer) and the fun and laughter just kept coming. At about 3:30 am or so Alex finally said, "Okay, I think I have had enough." So we rapped up the shadow party; promised to do it again the next night and we all went to sleep. It was quite the night.

Saturday was a gorgeous day here and Alex spent time in his Sky chair with his dad and I made chili. We had some dear friends over and played some more Wii. Then Sunday morning came and Steve told me that "he was never so happy to see Alex awake as he was that morning." Alex had slept in and also took a long nap Sunday afternoon. Sunday was the first day that I would say was a "bad day" for Alex. Even though he had a friend over, he just was slow and seemed to have more difficulty breathing. He wore his oxygen quite a bit yesterday too.

So last night went okay. There was suctioning at 4am, but that has become the norm now. Alex has been making jokes and seems in better spirits today. It may be due to the fact that my sister and her family on driving up today and will arrive this evening. Alex has already asked if he can stay up to see his cousin!

Alex has not eaten much (if any) in the last few days. He has peed though! Praise the pee! And the nurses say he is not dehydrated. His Spider milk now has glycolax and yogurt added to it. I think some of his tummy pain is partially due to constipation and some to coughing soreness.

So today begins another day. Make it a great one! Tell everyone you love how you feel and give some one special a big fat kiss!

Love and God bless!
G

Friday, October 19th - Odds and Ends

2007-10-19T07:02:00.000-06:00

Good morning. So I want to tell you all some things that I keep forgetting. First of all though, Alex is having very good days and very undesirable nights. He has neither, eaten, pooped or peed in several days. I'm concerned about his hydration level too. But through all of that Alex still finds pleasure in his days. You should see him "change position" on the Sonic Wii Treasure Hunt game. The character does this kinda cool "beam me up" graphic which when Alex saw it for the first time made his chin drop and say "Wow, Mom did you see that? That was so coooool!!" And from that point on in the game, he forgot about winning treasures and just wanted to repeat that cool effect. Yesterday, we had an impromptu lunch at Snooze with some of Alex's favorite people! Which was followed by a play date here while Steve and I met with the hospice chaplain. I have no idea how we had the conversation we had with her about "arrangements". I just know that life is pretty surreal at times these days and somehow that helps you get through stuff you never imagined in your whole life doing.

Anyway, after taking a long drive with Nonni and dad (read as Alex's favorite napping place); Alex came home and even more friends started showing up. Pretty soon we were having a dinner party and the house was full of laughter, good Thai and lots of wine. Alex entertained the masses with his new "Incredibles" game! It was a very special night.

So back to the odds and ends. I have realized that I have not written about Zoe Grace in a very long time (I think). So I want to tell everyone that she is doing quite well. She has not been to school much in the past month or so, and she really does not seem to mind. She loves to watch Alex's Teenage Mutant Ninja Turtles DVD and if we did not entertain her in some other way probably would watch it 24/7!! She also feels and knows the energy of the house. You may wonder how I know this and let me tell you. As you may have read, Tuesday was a VERY hard day for me. I woke up crying and could not really control my tears much that day at all. Anyway at one point, I was in the kitchen (not crying) trying to figure out what to eat for breakfast and Zoe came running from the play room (directly across from kitchen) and jumped into my arms. For the next few minutes, we just stood there holding each other. She had her arms tight around my neck and her legs even tighter around my waist. That same thing happened later in the day and I must say at a perfect moment. I love this little girl and when I think of the tragedy that is predicted my heart aches and my tears come immediately.

Which leads me to my next point about "Why?" I have concluded that there is no "why". There is not one possible reason any of this should be happening. And if someone were to come to me and give me a reason it would be so inadequate as to explain why Alex's bright, shining beacon of intelligence, beauty and pure joy has to be extinguished. It could never help me understand the reason Zoe may never remember her brother. Nor why any mother is asked to survive without her first born. There is no WHY!! And somehow that knowledge gives me peace. At least I don't dwell on "Why?" anymore (okay sometimes, but not as much).

Another revelation I had just minutes ago and the reason I got out of bed to write to you concerns mortality. First some history. My paternal grandmother, who was an angel on earth, passed of breast cancer at 55. She never smoked nor drank a day in her life. My dad, who never went a day without smoking or drinking, passed at 55 from brain, lung and liver cancer (and that is just as far as they looked). So I have had it in my head since 1998, that I may not make it past 55 and that the day I turn 56 would be a wondrous day. Lately, my "clock has been ticking" and the thought of having a baby has risen. Steve said to me last night, "I don't want another baby, it is too late in the game and I don't want to raise a Down's baby. But that does not mean I don't want to raise another child." Then we went on to talk about adoption and timing so ZG would not get confused, etc. Anyway, in the wee hours of this morning, I started calculating how old a child would be if I were to get pregnant when I turned 55. Then I realized, how ridiculous this thought was because of Alex and his prognosis. Here I have been thinking that I was good til Alex was 18 or so. When in reality, I only have today. Just today. And so do you. You only have today with the ones you love and if you don't realize that every second of every day then you are living a lie! Don't count on any years to do anything. Why would you if you have read this blog for a while?

Okay, I'm off my soapbox. Today is a very busy day. We will be going to pick up the pottery Alex painted last Saturday with his cousin, Addison. And will have a mini painting party with the same friends from yesterday. That is after the oxygen guy comes this morning as well as two nurses visits and I am having lunch downtown after that, then painting. If you want to join us, we are thinking 2:30 at the mills. Just show up! Love to see you!

Finally, I just want to say thanks for all of the support. Your comments lately have made a world of difference and I am most appreciative!! A dear friend told me the other day that it takes him several hours to recover each time he reads the blog. I know this feeling since it is exactly what I went through reading the Steadman's blog. But just so you all know, you don't have to read this stuff! I don't know that I would if it took several hours to regain my composure and ability to function. Anyway, I do appreciate your comments.

Love and God Bless.
G

PS-Melinda, thank you for the comment. I would love to talk to you but don't want to interrupt your day. Perhaps you could email fightthebump@comcast.net and we could set up a time that works for both of us?

Wednesday, October 17th - ?

2007-10-17T21:38:00.000-06:00

So my eyes popped open this morning at 4am. I have no idea why, but when I looked over at Alex I could not tell that he was breathing. When I finally did see his body move with breath, it only seemed he was inhaling. I can't express the terror of that moment. I kept watching and feeling and finally hooked up the pulse ox machine to check out his stats. His blood ox was at 100 (nurse explained this is not so good, since it indicates he is not releasing carbon dioxide) and his heart rate was up more than normal for sleep (this too is bad, since the heart will work extra hard to compensate for the poor breathing). I tried to get him to wake up so I could adjust his position (for his airways) and he did not respond until I finally just moved his body. (Another bad sign). So I went in and got Steve and we just stayed with Alex for a long time. I finally had to leave the bed and ended up on the sofa with single tears running down my cheek.

Steve came and joined me for a while and we talked about how horrific this is and this is must be what they meant by "it will be very hard towards the end." Yesterday was very hard on me and last night did not ease any of my discomfort. This morning Alex decided he wanted to get up and go to PT (to see Kerry) and so we headed off. He had a great time with Kerry and I videotaped the whole thing. He loved kicking her down and then swinging and kicking large bolsters over on me! There were even bugs on top of the cylinders just to add to his pleasure. He took a few steps and then we headed home.

After that, I went to my hair appointment and have a surprise for you all!! I'll post pics soon! Anyway, while I was gone, Alex had a wonderful visit with some of our friends who kindly brought us yummy Indian food. Everyone but Linda was resting when I got home. Steve and Alex spent a lot of time on the Wii this evening playing some fun games. Alex is now sleeping and Steve and I plan to both be in bed with him tonight.

For the last two evenings, Alex has told Steve "Daddy, if you have any bad dreams just squeeze my hand." This with the question Monday at Mac Grill tells me Alex is quite aware of his changing body. Steve and I have discussed whether or not we should tell him that we know his body is changing and that he will not have to fight much longer. That we love him and our warmth and love will always be with him and his with us. I want to tell him he is the bravest boy I have ever known (wouldn't be the first time) and that being his mom is my greatest, most fulfilling accomplishment of my life (Zoe is too, for the record). As I type this I just finished a phone call with Alex's play therapist. She concurs with our thoughts. I'm sure much more thought will be given to this in the very near future.

I'm going to bed now. Pray for our beautiful, strong, courageous boy.

Love and God bless
G

Tuesday, October 16th - Hard Questions

2007-10-16T09:37:00.001-06:00

Good Morning. So yesterday was a very hard day for me. We took the kin to the local aquarium and then out to lunch at Mac Grill. While we were enjoying our lunch, Alex asked me "Mom, how many days until I quit choking?" I responded but the hole in my heart has yet to recover. Somehow this question revealed to me (again) that Alex is very much aware of the changes going on in his body and no matter how hard I try to ignore the facts this is really happening.

I went into a mini depression and I really don't know if I'm out of it yet. Alex really did have a great weekend. He even took three steps on Saturday night, while Steve and I were out on the town. His Nonni said that in all of her time spent with Alex she has never seen him laugh as much as he did on Saturday with his cousins. I think Steve and I should go out on the town more often!!! Anyway, with news and rejuvenation like that I was pretty strong in my hope and faith.

This is really scary and Steve and I have started having discussions no parent should ever have to have. How do you make such decisions when your child is such a bright and shining star in your life and the lives of so many others? I really don't know how to and I REALLY don't WANT to either!!! This sucks on so many levels. Okay, I'm slipping. Must come back!

I'm done here. This spilling of inner thoughts is bringing me down. If anyone knows of a good housekeeper, please let me know. I'm desperate!!

Love and peace to you all.

G

Songs of Love Resolution Information

2007-10-16T09:33:00.000-06:00

I have heard from several of you that Alex's song would not play after download. The song has been re-uploaded by the Songs of Love staff so it should work now. If you have already paid for the song and still want it; just give them a call and they will email it to you (after verifying your transaction). Their number is 800.960.SONG.

I hope this helps!

Thursday, October 11th - Songs of Love

2007-10-11T09:26:00.001-06:00

To hear/download the song or ringtone for Alexander's Song of Love go to www.songsoflove.org and click on the Family and Friends Song & Ringtone Download link. Simply type "Kasnoff" in the field and the number Child's last name13489 in the Child's Record Number. They will ask for a small donation, please help us support this organization.

I hope you enjoy the song.

God Bless.
G

Wednesday, October 10th - Dr. Lee's Visit

2007-10-10T16:47:00.000-06:00

So the week started off with Alex having to go to the hospital/clinic to have his broviac line repaired. They had to put an IV in his arm. Alex was such a trooper. He was very upset about getting another "poke" but when it came time to put the needle in he did not cry or even flinch. The catheter broke on the first try too, so he had to endure two pokes. It was an amazing moment of pure bravery and courage.

Alex did not sleep well that night and was really exhausted all day yesterday. He asked to go to bed early last night but according to Steve, did not get a good night's rest then either.

Today we started the day with a return to OT/PT. Alex's therapists have coordinated overlapping appointments so that Alex only has to make one visit to see both of his favorite people. It was so great to see Alex laughing and smiling. He had a great time and so did I just playing with him.

Steve's sister and her family arrived today. We are so happy to have them here with us. Alex is loving having the boys around to play video games with him. We are looking forward to a great visit.

Today I woke with a sense of hope. A dear friend of ours made arrangements for her acupuncturist to come by to see if he could help Alex. He has had prior experience with brain stem tumor patients in the past. Before he examined Alex he told us the criteria that would need to be seen to know whether or not he could help. He talked about a vein in his finger and said if it is visible to this line then there is nothing I will be able to do. During the exam, he showed me that Alex's vein is to that line. The consult ended soon after that but not before Alex bravely accepted his offer of two acupuncture needles to help him feel better. Afterwards he spoke to Steve and me privately. He reconfirmed that unfortunately there was nothing within his power to help Alex. I (stupidly) asked if he could tell how much time Alex might have and he replied, "perhaps two to four week; it is severe".

These words brought such a wave of sadness over me I was barely able to maintain my composure. I absolutely hate this. Again, I must say "IT IS SO UNFAIR"!!!

That's it. Alex wants to go outside and I am going to go with him.

Love and God bless.
G

Saturday, October 6th - Counting Days

2007-10-06T06:30:00.000-06:00

So it is day break and I can't sleep. Alex is doing okay. I wish he would eat more or any really. We raised his Medazolam up Thursday night because he was so scared about choking and would not sleep due to his fears. He now only wants angel hair pasta (with alfredo sauce) because it is easier to eat.

My mom and stepdad are in town until tomorrow and it has been great to have them around. ZG has turned into a momma's girl lately and I absolutely adore it. She is such a sweet child with such a big spirit. You can't help but be infused and lifted by the energy she puts out.

So I woke up Tuesday morning with the thought that it was 13 days since Alex left the hospital with that "six week window" looming over his head. I can't wait to get to 43 days post and tell the doctors Alex is doing well! I want to make each day count but not in that way!!! I am struggling with this so-called countdown. I try very hard to think of it as a "count up" but it is difficult at times.

I want to thank some more folks. Please know that my mind is not right and if your name is not on these lists, it does not mean that I don't love and adore you. Just that I am exhausted and can't remember my own name at times.

Heartfelt gratitude to our dear friends:

Jerry and Martha
Susan, Jevin, Emma and Mitchell
Diane and Josh
John and Nicholas
Kerry
Peggy
Jenny
JoAnne
Dr. Foreman
Wanda
Bridget
Gayle
Katie
Linda
Christina and the boys!
Barbara and Burnsie
Ms. Lisa
Katrina
Kathleen
Eric Alexander
(and to all of you that read this blog and send us your positive thoughts and comments)!

Okay, well I think that is all I had to say right now. We plan to revive the Play, Pavers and Prayers event. Just not this weekend. Next time, we will set up individual dates with friends so that everyone can have some one on one time with Alex. It should be much more manageable this way.

See you soon!

God bless!
G

Instead of "How are you" say . . .

2007-10-06T06:05:00.000-06:00

Here are some alternative greetings for you to consider:

What's up?
How's it hanging?
Peace.
Peace Out.
Seen any good movies lately?
How about them (Sooners, Rockies, or your choice)?
Read any good books lately?
I got some money for you.
Wanna dance?
Have I told you lately that I love you?
Can I borrow a cup of sugar?
May the Force be with you.
Mind if I do that for you?
Can I get the door?
You've just won a NEW car!!!
What's your sleep number?
How's the play area coming along?
Can I bring you more wine?
Would you like these Rockies tickets?
How would you like to meet Oprah? She's been dying to see you?
How do you like me now?
You were in my dream last night.
I brought you this pumpkin!
Happy Autumn!!
Feel the POWER!
Wanna cookie?
Gee you look great!!
Have you lost weight? (even if you know I have not!!!)
Keep the faith.
Be strong.
Mind if I cut in?
Can you hear me now?
What's your sign?
Isn't it a beautiful day?
Can I get you some coffee?
Wanna go to the spa?
I just love your kids, dog, house, car, etc (you pick)
I found this money tree and wanted you to have it!!
God bless you.

Please don't use these greetings:

How are you?
How's the family?
Can I borrow a ten spot?
Can you help me with this ingrown toe nail?
Did you see my new car?
Hey, your dog just crapped in my yard!
How are the kiddos?
Can I get a ride?
Smile! (I hate it when people tell me to smile!!!)
Can I get you some more blood sausage?
I believe in hell.
Have you decided on the corneal donation yet?
Have you gained weight? (even if you know I have)
You're my heeeerrrro.
Hey there big mama!
Sleep much?
You've just won a free mountain vacation!!!
Sorry, mam, but that's gonna cost you.
I feel your pain.
Can you mow my lawn?

I hope this helps.

GB,
G

Tuesday, October 2nd - Fabulous Days!!

2007-10-02T10:44:00.001-06:00

Hello Friends,

Wow what incredible days we have had recently. I've posted some pics for you to enjoy. First of all I want to say thank you to Susan and The Brown Family and the kids at Primrose in Arizona for a wonderful gift and lovely card! It was such a surprise and we have the banner hanging in our living room so we can enjoy it all the time!! You are so kind and loving to think of Alex and follow his story. We cherish your kindness and loving spirit!!

I also want to thank the following for their generosity and kindness towards Alex and our family:

Judicial Arbiter Group, Inc
Don Kramer and his associates
The Fix family
Missy Hooper
Karlyn and Vikram
Jo-Nell and Katharine
Sky Chair
Kris (OT)
The Honorable Virginia Chavez
Alex Garlin
Patricia and Howard McCarthy
Ben Michaels
The Honorable William Meyer
Kathy Cavanaugh
Valerie, Fernando, Gabriela & Sebastian
Courtney & Steve
Tina, Gregg, Samantha and Aidan
Paul and Diane
Stephanie, Blake & Evan Winston
Ms. Alicia
Ms. Grace
The Slater Family
The Hunter Family
Ben, Crissy, Esther and Wiley
Mark, Thea, Callan and Allyson
Merrie Jones
Joanne Olmstead
Kat
Ms. Olga
Nadine
Heather and Alan
Steve K.
Beecher
Patty
The Honorable Daniel Shannon and Joyce Shannon
Kevin and Cydney
Heather and Duncan
Marilyn and Ben
Annie, Sam, Jackson and Alex
Chantall and family and the TC2 community
Jane and Lucas
Brook, Kelly, Casey and Zack
and everyone else that has loved and supported us through this journey!!

We love you all!!

So, some of the pics show Alex enjoying his new Wii game. Going fast at the Nature and Science Museum with his cousin. Then Alex and friends at the first Play, Pavers and Prayers party. Alex made a beautiful stepping stone and so did his friends. We had to cancel this last Sunday's party due to exhaustion, but will do it again soon (just on a smaller scale).

Then there are pics from the birthday party Jo-Nell, Judicial Arbiter Group, Inc. and the Downtown Aquarium made possible and absolutely fantastic! Spiderman showed up as a complete surprise to Alex and he really made it a very special day for Alex and everyone in attendance. It was incredibly joyous to see Alex enjoying himself and his friends so much!! I know everyone there was moved and felt the wonder of the moment(s). I had a blast but singing the "Happy Birthday" song really took me off guard. I almost lost it right then. I so don't want this to be Alex's last birthday and am putting so much energy into prayer and hope.

Finally, there are pics of Alex on his new track (riding his trike!!!!) and in his graciously donated Sky Chair. Steve and company have built a swing arbor, track and installed mulch in the play area. Also completed are a new fence for the back yard and the transformation of a Bali firebowl into a really neat water fountain with changing lights at night!! This is really coming together thanks to all of the hard work of many dedicated and loving persons! Thank you all!!

Also, I want to tell you all about Alex's introduction to Dr. Jesus. My sister's in-laws drove all the way from Oklahoma to tell Alex a very special story about the greatest superhero of all time, Dr. Jesus. Dr. Jesus' special power is taking away bumps (at which Alex replied "I have a bump!") and he loves healing children the most!! Alex (and everyone there) called Dr. Jesus to come and take Alex's bump and allow him to run and play like he used to do before the bump. Since then, Alex has asked Dr. Jesus to take his dizzy eyes away. This morning Alex proclaimed, "Hey, Mom, I think my bumps are gone. I think Dr. Jesus took them away!" I agreed and told him Dr. Jesus could do that and that he was absolutely right to say so.

There have been so many blessing lately that I can't even recall them all. Steve's dear friends from California came out this past weekend for a visit and my sister and her family were here for the bday party and to offer more support as well. Steve's sister came out as well and had a lovely visit with us. We have been surrounded by so much love that one can only be grateful and filled with the energy and support of those around us.

Alex is actually doing remarkably well. He has slept well at night mostly. And except for some nausea episodes (tummy bug hit this house over the weekend) that are very scary for everyone; Alex has really seemed to enjoy being home. He got upset with me yesterday, when "no friends came over to see him". I had to remind him that his cousin had just departed around noon and that he counted as a visitor. Everyone here is exhausted from the last week or so and I had to call for a break from visitors. I think I am going to have to limit our home visits so that the complete exhaustion does not get more of a hold on us. I still feel like I could sleep for days, but with Alex's medicine schedule, it is impossible to sleep past 7:30am each day. The days get so busy too that I find my self overwhelmed with basic life stuff. I even took a week off from opening mail just because I couldn't handle it!

Okay, well that is all I can think of right now. I hope each of you make this a great day and enjoy those who love you!

God bless!
G

Monday, Sept. 24th - Good Days

2007-09-24T16:24:00.000-06:00

Hi Everyone. My sister has asked me several times to update the blog so I thought I'd better do it. On Friday, Nonni bought Alex a Wii video game and life has not been the same since. It's alot of fun and quite easy for Alex to use. He was playing with it on Saturday with his cousin's cousins and someone described the scene as "Alex is laughing from his toes!" I must agree it was so wonderful to see him engaged and happy and laughing. Saturday was spent with Steve and some incredible friends building a fence. I picked up Steve's sister, Christina, at the airport and we enjoyed the last day of summer on the porch.

Sunday started off with a call to hospice for oxygen. We have 7 canisters of O2 in this house and every single one was empty. Alex looked pale and would not talk because he "did not feel like it" so we were told to call 911 and before you knew it you could hear the sirens and our house was full of firemen and then paramedics. It was not how anyone would choose to start their Sunday morning but what can you do. Needless to say, all of the portable tanks will be kept full from this point forward.

Alex started his Valproic Acid infusions on Saturday. He gets them every eight hours and I have to say that schedule is causing alot of exhaustion for me. I have to get up at 4am to take the stuff out of the fridge. Then at 7a I have to be awake enough to mix up the concoctions and administer the drug. This happens again in the afternoon then at 11pm. Each infusion takes 45 minutes and it is imperative that Alex not be off his Medazolam for much longer than that so I have to stay awake while it is going on.

Last night, Alex and Zoe took a bath together for the first time since he got his mediport in July 2006. Zoe loved it. Alex was a bit tentative but he finally started playing. He thought he'd have his pump (Medazolam) hooked up to him during a bath so that is why he put it off for so long. Once I figured that out then it was much easier to convince him to get in the tub.

Yesterday was also the first Play, Paver and Prayer party. Our house was full of so many friends and love that it infused us all with energy and joy. Some great stepping stones were made (thanks Herndon-Chadd family) and a lot of work was completed on the play area too. The water feature was set up and it is so awesome!! It has beautiful lights at night and is so tranquil and soothing! I love it. Our friends also made prayer flags for the four temple chimes in the front of the house. Steve is out buying string now so I can hang the first batch up asap!

The party will continue next Saturday and Sunday and I can't wait. It was exhausting but worth every bit of our energy and once again, Alex had a great time. He even went to the Home Depot twice with his Dad and friend Mark!

So after the first night of sleeplessness due to a grown up pulse ox machine on a kid's body; we took Dr. F's advice and unplugged the darn thing. Sleep has been much better. And Steve and I now switch nights in the "big bed" with Alex and the nursery with ZG. No matter where you sleep, things still wake you up, but at least some sleep is possible.

Today found Alex with lots of energy and smiles. We had talked about going to the Science museum but that did not happen. Tomorrow the "Flashes of Hope" photographer will come by and we will have a family photo session. I can't wait. They did a session with Alex before but ZG was ill and could not come to the clinic.

I want to thank you all for your support and prayers. I believe I am only standing thanks to the strength you send me and the energy I sap from anyone that will hug me!

I have thought of something that would help us out alot! We need someone to walk Roxie and Toby. Roxie is such a wonderful dog, but she is a puppy and a high energy one at that. We would love to work something out so she (they) could get walked in the AM and PM. Let me know ( fightthebump@comcast.net ) if you are available.

Finally, I want to thank Don and his colleagues for their generosity. Your gifts were overwhelming and such a blessing. May you receive tenfolds the prosperity in return.

Okay, I hope that is complete enough for you (Stephanie)!

Love and hugs,
G

Friday, Sept 21st - Some Good news

2007-09-21T09:00:00.000-06:00

Well, Alex is home and seems to be more relaxed. He is on a "dying drug" that is an anti-nausea, anti-seizure and anti-anxiety medication. It kinda makes him stoned. Yesterday morning he said to us with glossy eyes "I am soooo happy." Alex has had several friends over and really enjoyed sharing his Spiderman Welcome Home cake with them all. They loved the blue tongues and lips!!

So one good thing that has come out of the past ten days is that Alex has been given permission to take "real baths". He had two in the hospital and we are still waiting to take one with little sister soon. I want to get him a bathtub handle to help him feel more secure. You should seem him. It is such a simple pleasure and he loves it!

So I just wanted to share some good news. Alex ate pretty well yesterday and we pray that that continues. Thank you all for your comments and love. We love you too.

G

Someday in September, 2007 - Visitor Rules

2007-09-20T08:32:00.000-06:00

If you choose to visit Alex, then we ask that you practice great discretion when asking questions and in all discussions. We prefer that you focus on making Alex and ZG happy. We also ask that you wear your GAME FACE! No bawling, weeping, sobbing, etc in front of the kids and actually we don't want to see it either.

I know this is hard, believe me! But if you can focus on the fact that no one has any guarantees on even how the next second of our lives will go and that Alex is here, NOW and it is our job not to waste ANY precious time then you'll have the strength to visit and enjoy this beautiful boy!

Love,
G

Someday in September, 2007

2007-09-19T23:19:00.000-06:00

So Alex came home today. I thought I would be ecstatic to have him home, but as we pulled into the garage, I realized I was bringing my firstborn home to die. I can not express the depth of sorrow and despair that came along with today's meetings. At one point, I was just begging that Alex not suffer from one of the many scenarios given on his death.

Steve and I have picked several fights with one another just to vent the frustration of the day. Steve did not take signing the DNR lightly and really sunk after that event. I did not like the discussion on the highly possible "48 hour coma" that was to come before death.

I have no idea what to think about. This is so F'd up on sooooo many levels that my mind is constantly struggling on not sinking into despair. Luckily we have friends and family to help us through these dark days.

I'm on the verge of exhaustion so I must go. So much more to share later. God bless.

G

Wednesday, Sept. 19th -The MEETING

2007-09-19T08:29:00.000-06:00

Alex will hopefully come home today, but before he does, Steve and I have to sit through an hour and half long "terminal care" meeting at noon. Hospice and the Butterfly Program (no idea what that is) will be arranged and set up and we will have to sign a Colorado DNR in order for Alex to get a powerful drug to help him with his symptoms.

Still running on fumes. One favor to ask. PLEASE don't ask us "how are you" just say "hello". Zoe is very excited to have the family together again. We all are.

Wish us peace and pray for Alex and ZG!

G

Tuesday, Sept. 18th - Dark Days

2007-09-18T09:18:00.000-06:00

So within the next 24 hours Steve and I have to make some very difficult decisions. Dr. F says Alex is in the six week window before his tumors take over and he can no longer breathe. Steve and I have three routes to choose from: terminal care (preventing and/or easing symptoms without surgery); surgeries i.e. gastronomy, tracheotomy, and resection (all could kill Alex and/or leave him on a ventilator) or experimental therapy. In a few minutes we meet with the experimental team, then neurosurgery then Dr. F again.

Right now, surgery is off my list. I really don't have any clue how I am standing right now. I just know that I'll be damned if I'm going to let Alex's days be filled with sadness and tears. He is doing very well actually and it is such a tease to have to hear the doctors talk then see his beautiful smile.

Keep praying please, miracles can happen.

God Bless,
G

Saturday, Sept. 15th- Scariest Moment of Life

2007-09-15T09:17:00.000-06:00

Alex seemed to be doing okay last night. He was telling everyone what he was going to eat today: noodles, raisins, edamame, waffles and Spider milk. He ended up in our bed with his portable DVD watching Winnie the Pooh with me and ZG and then Evan and Stephanie. The nurse came by at six and went over the IV drugs with me and we gave him everything at 8p. At 10:49pm, after Alex's 2nd dose of morphine last night he stopped breathing and was unresponsive and blue. 911 was called and they were able to get him breathing again. I can't explain how absolutely horrifying it was to see Alex with his eyes rolled back and blue.

Turns out the morphine (injected into his heart) was too high a dose (paramedic said it was a tricky drug to manage) and he has pneumonia. He also probably aspirated while unconscious. I rode in the ambulance and Steve followed in the car. At 3a, he was put into a hospital room and I was given a cab voucher to go home. Up to that point I had had 4 hours sleep in 48 or more hours. I got 6 hours sleep and feel much more human.

So, back to the hospital we go. Alex was upset with me last night in the ER and was yelling at me to stop asking him if he needed suctioning. I have never been so happy to be yelled at in my life!

God bless,
G

Friday, Sept 4th- Alex is home!!!

2007-09-14T13:45:00.000-06:00

It's 1:43 and Alex is home!!! We are all exhausted so that is the post for now.

GB,
G