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

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

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

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!

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 . . .

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

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.

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

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

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

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!!

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!"

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

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

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

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!!

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

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

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!

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?

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