Tuesday, January 1st 2008 - New Year

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

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

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

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

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

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

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

Tuesday, December 4th - Amazing Kid

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

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

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

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

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

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

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!!

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!

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

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

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!

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