doing our own dance

The LORD has eased me into acceptance (maybe I'm still getting there) of a child who really does have issues. Given the spectrum of kids with Peter's problem (from severely disabled to very mildly affected) I was determined that I would make sure he was on the mild end by doing everything I could at home to "fix" him. And by God's grace, I still pray that I can be of much benefit to him and help him develop as best he can. But when the brain isn't working right, it just isn't, and perhaps it takes a lot more effort than I wished to help it along.

It's easy to forget the development I've already seen, and answers to prayer, in the midst of the things Peter ISN'T doing yet and that I pray about now. For example - he is truly smiling more - yay! It's so nice to have a happier baby, and one that can express happiness a little. He still doesn't smile back at people as much as one would wish, but he does express pleasure at least. Not laughing, but at least smiling when he likes something. It's easy to forget that just a few days ago I was starving for some smiles, and now he's doing it! ... easy to focus more on the things you still want him to do, like realize that his hands are under his control, and that they can grab things.

He does seem happier when I'm off dairy and soy. Chocolate might be ok - we're testing that theory in small doses. I was surprised to find that it is harder to get soy out of my diet than dairy. Well, I haven't worried about baked dairy (dairy in bread, muffins, etc.), just fresh. Baked doesn't seem to make as much difference. But soy - there's soy in protein bars, soy in granola bars, soy in multi-grain crackers, soy sauce that I use for cooking. At least (according to one pediatrician) things like soybean oil and soy lecithin should be ok, because there's no soy protein in them, and it's the protein that bothers the baby. Whew - because those two things are in a whole lot more products that I'd have to remove if they were a problem too!

Anyway.
Getting good sleep really helps. Lack of sleep makes me emotionally fragile.

I feel like I'm in grief like when you lose someone, though not as intense. Where on the bad days, anything can make me sad again. Sad to lose - what? a healthy child, perhaps. I grieve over his lack of development. Grieve as each day goes by that he hasn't learned something that his peers are learning. Grieve to realize my life has been radically changed - not just for a year or two, but possibly indefinitely. Grieve to wonder what his life will be like.

It's as if as time goes by, he and I are increasingly on our own path, not on the one that his peers are on. We are doing our own dance to a music no one else can hear, dancing away from the rest, into our own world somewhere.