Sunday, Sept. 9th - The Battles

Hi. So Alex is doing pretty well. Steve realized last night that when he pinches his nostrils and blows, he is trying to relieve the pressure inside his head and not his ears. His choke is actually okay, but he is so frightened about it, that his fear causes a lot of problems during meals and pill time. He has said, in just the past two days, that his left hand feels weird and today is was visibly shaking. I told him it is because his body is hungry. That got three bites of waffles in him. Small victory. Basically he is not eating much these days. That is one of the battles. The other is the pill taking. Just dreadful, really. His dizzy eyes (brainstem controls eye movement and his eyes sometimes become visibly jittery) have caused him to say, "Mom, I don't think I'm a coloring boy anymore." So the Color Wonders no longer hold any appeal for him these days. He loves to be around people, wakes with a smile and enjoys playing his Nintendo DS game. Even the doc said that Alex's demeanor and body don't match the last scan. Another battle.

So we don't get to go on our mountain vacation. Fortunately, the condo owner graciously offered to rebook or refund our money. I'm praying to rebook. Alex will have a surgical consult next Tuesday to discuss the least invasive option, ventriclostomy (putting a hole in the bottom of the 3rd ventricle via probe). The pediatric neurosurgeon that did the brain biopsy last year will be performing this procedure as well. I think they are trying to book the surgery for the 17th. No final word yet on that though. Steve and I decided to postpone the surgery so Alex can enjoy his cousin's visit this Friday. The neurosurgeon said it was okay to wait one week or so.

We have not spoken to Alex about any recent developments. He has yet to realize that this is the day we should be heading to the mountains. Steve has taken tomorrow off and we have plans to go to the Zoo. We plan to tell him tomorrow that our trip has been postponed; Evan is still coming Friday; Dad is leaving Tuesday and will be gone for a few days; and that he will be seeing Dr. Handler on Tuesday to help him with his nose pressure. That is so much for a four year old, huh? We have learned to time the information given to Alex very carefully. On Friday night he was awake most of the night because "his mind was full of thoughts". I wanted to know what those thoughts were, but in order to get him to sleep, Steve and I just took turns sleeping in the bed with him and ZG.

Speaking of ZG, she (and all of us) are loving having Nonni around as well as her dog, Toby. Zoe is constantly saying "Toby, Toby, Toby" and ordering him around. Roxie loves having someone around to play with as well. Our friends have found a home for Roxie with lots of space and two boys to play with her. Steve and I don't want to give her up but know she is more than we can handle at this time. To add to the equation, she is really Zoe's dog and we think Zoe will not do well with Roxie Rue gone especially if.

So I have to say it is interesting to see how different persons respond to this situation. I (more than anyone) know there is no right nor wrong response, but there are interesting ones. Some acquaintances step up and take it upon themselves to make life easier by offering comfort, food, beer, wine, company etc. While some dear friends are virtually nonexistent. I don't blame anyone for not wanting to be a part of this but I do honor those that make the choice to participate with us.

On Friday, I took Zoe to school. On the way, my mind started up and by the time I reached the school I was near breakdown. I had to tell ZG's teacher that we would not be going on our vacation and she asked "how is Alex?" Which was probably the most difficult question to answer and immediately started me crying. Then the sobs came and I could not get out of that school fast enough. I'm sure the parents that do not know our situation are wondering what is wrong with that mom that is always crying! I really don't care though. It's just that you don't want to break down in such a public place. So I came home and told Steve and Linda that I was not to be left alone with my thoughts again! Steve went out to run an errand later that day, and upon his return said, "I know what you mean about being alone with your thoughts, now." Another battle.

So for the past two days, I have just kept moving. I absolutely drove my friend and Linda crazy last night while they were relaxing on the patio by my constant motion, but until I can just drop from exhaustion, sleep is not wanted nor easily come by. Another battle.

The worst battles by far though are the ones raging in my mind. Do I believe the prognosis and brace myself for the worst or have faith (in a God I am so ANGRY with right now) that Alex and our prayers will dissolve these things growing in his brain? Do I succumb to the downward forces that are pulling me into depression and despair or not waste a single second of this precious time with the most precious, smartest, sweetest and spiritual little boy I have ever known? How do I reconcile that God is trying to take away my greatest achievement, my love, my heart, my soul? How do I figure out what cosmic energy I have screwed up and make amends? Whose fricking fault is this? How do I make this stop? Why would the Universe take Zoe's big brother away from her, WHY? Why is it that when I am told that God only gives you what you can take; I only hear,"you deserve this"? There are no breaks for you. You had a shitty childhood that you would not wish upon your worst enemy and now you are going to be punished further as a mother? What the F#@K!!!???!! How is this "my friggin destiny"? If so, what can I do to make it right? I'll do anything!!!!

Since Thursday, I just struggle with this surving this very second and hope to get through the next second. That is the best I can do. Steve and I went to Home Depot to get things for the play area. That was very enjoyable. Steve has immersed himself in this project. I just hope he leaves some work for all of our friends to do at the end of the month. I have sent out an evite asking anyone who wants to, to come and help us finish this project. So far the responses have been quite positive. I can't wait to see this play area when it is done. It will have a play house, sensory area, stepping stone path (made by friends), swing arbor with interchangeable swing components, stage, sand pit and water feature. All connected by a cinder track so Alex can use his transformer (or wheelchair) to move around. It will be the play area of any kid's dreams!

I have had several people ask "how can I help?" I know many of you feel as powerless as we do in this situation. But there are some things that would help. Visiting Alex (play dates) are always welcome. Keeping Steve and I engaged is another way to help. I would like to see Steve out with some buds doing "guy things" more. I could use someone to help me get to yoga or pilates or something. Funds can always be used for the play area. Since we are a single income family now, I am completely stressed about funds. Alex would love to get some more Nintendo DS games too (rated "E" for everyone, please). Prayers are always appropriate as well. I just ask that if cards or notes are sent they not say "get well" but rather just let Alex know how great he is and positive stuff like that.

Well, that is it. I am going to go outside and work on the water feature. Wish us well with our battles.

God bless.
G