Wednesday, January 25, 2006

I just wanted to add a couple more photos (now that I know how to do it, it's easy!) and let everybody know that Theo is doing ok. He was a little fussier than normal yesterday, but he is doing better today. We had to go to the hospital Monday to have some more of that granulated tissue removed, but he did fine. I think it might come back though, it looks a little pink around there already. He may be prone to that stuff--he had some of it back when his cord fell off and he had to have the silver nitrate on his belly button (the real one, not the surgically placed one).

That seems like a lifetime ago. It is so hard to believe so much has happened to him--and to us--in his short little life. I have never had any surgery at all and my 8 month old baby has already gone through 7 surgeries. Tumor resection, ventriculostomy twice, shunt placement, central line placements in his femoral artery and in his chest, gastrostomy. There are days when all of this feels like it's just crashing down on me--weighing me down. So many of you write me and post comments about how strong I am and how wonderfully I handle all of this--and even though I can't tell you how much I appreciate your comments, they really do help me feel better-- it doesn't feel like that to me. We both just try to get through each day as best we can and give him the best love and care we can. There are days when I feel very fragile, when I feel like crying at every little thing, days when little things really bother me and all of a sudden I will feel cosumed by anger or sadness. Days when I feel self-pity--which I try hard to avoid, but I know it's inevitable. It's normal to feel that way. A normal way of dealing with loss. But there are times that I can't seem to avoid it and I slip into that feeling that life is so unfair and I want to stomp my foot and cry and scream. There are times when I am in a place with lots of families and children--and I don't mean places like DisneyWorld or even a playground--normal places like the mall or Target or the grocery store on a weekend--and I find myself wondering at the sheer number of healthy children --and at those times it seems they're everywhere!--all these healthy children all over the place who don't have brain tumors, how did my child happened to be the one in 30,000,000 (that's thirty million) who does? And please don't think that I would wish it on any of those children, I wouldn't, but I can't deny that feeling that I wish it had not been mine. Especially when I see babies around his age, sitting up, sucking on their hands or anything else they can get in their mouths, looking all around, jabbering on in their baby talk--I just can't help but think "that's what Theo would be doing now". He was so bright and alert and already studying our faces, making vowel sounds "ooo ooo ooo" "Oh oh oh" back at me. He would probably be saying words now! And now we have this new baby who we love and cherish who doesn't do those things, but is sweeter than anything else in the universe and who spends all his time teaching us how to love him better, helping us to keep our hearts open even as they break and we do that just because of him. I know in his short time on this earth he has touched more lives than many of us do in a whole long lifetime of decades upon decades. But it still doesn't keep me from desperately wishing that this had never happened.

Anyway--please continue to keep us in your hearts.
Love from all of us--

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