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.

homeschooling?

Someone might ask, "Wouldn't it be easier if you weren't homeschooling? Maybe you should put the girls in school for this year." To which my answer is: here is a non-homeschooling day for you: be out the door with 4 kids by 7:45 every morning, having not only fed them breakfast and gotten them dressed, but made at least 1 lunch for school; be out the door again by 1:45 every day to pick them up from school - or, 11:45 to pick up Emily and then 1:45 again to get Katherine. Regardless of whether that's in the middle of anyone else's nap at the moment, including mine. Then use whatever time is actually available in the afternoon for the girls, to help them do homework and hear how the school day went, as long as Peter is still napping (oh right, I had to wake him up to go pick up the girls). So if Peter's awake, I'm doing therapy with him, so I can't help the girls till he naps again.

So the summary would be: sleep deprived children (have to get up earlier, and little ones get interrupted naps every day). Girls would not see much of me, and what time they see of me would be spent helping them do homework. I'd miss my naps, and have to get up earlier than usual, and not have much time with the girls. And also, Jeff would be bored silly with no girls to play with all day, and they couldn't play much with him after school either till their homework was done. So I wouldn't get much done either with them gone.

I think it's easier to keep everyone home. Have naps when they happen without having to leave the house 2-3x/day. Do schoolwork with the girls in the morning when Peter is napping. Check their schoolwork later. Read history and science together, learn art together, do P.E. and Spanish together, whenever they happen. Then at least they get to see me at the same time as doing schoolwork. And they are here to help play with Jeff or help with Peter when I need them.

For now. This is easier for me.

4-month pediatrician visit

Peter had his 4-month pediatrician visit today. The Dr. confirmed what I already knew - Peter's not doing some of the normal 4 month things. But somehow hearing him say "delayed" just makes it all the more real. I'm praying that the early intervention people will be able to tell me what therapy I can do with Peter at home NOW before I have to wait for another evaluation that says "delayed" more. I don't want to waste any time...

Peter also was panicking when I put him on his back after lunch, to the point of tightening up his whole body and screaming, till I held him and he calmed down again. I don't know what the deal was, except that he has not had any good naps this morning. I don't think he's acted like that before.

a weird week

So, the day after my last post, Peter was a silent child. Not normal at all. Didn't have much interest in eating till at least midday. Looked lethargic, sleepy, just "out of it." Literally didn't make any noise till a few weak peeps when he was cold after being given a shower and not being dressed yet. (Yes, we just wash him in the shower when the other kids have a shower. No room for a baby tub anyway, and why run a bath in the big tub for one baby?). By Sunday he was at least eating normally, though still sleeping more than usual. Then we had a fussy Monday, Tuesday, Wednesday (without my eating dairy or chocolate...). So I read that soy proteins could be reacted to the same way as dairy proteins (by a baby) because they are structured similarly. And I had soy cheese on my pizza Friday night. Don't know if that had anything to do with it. But then you start second-guessing everything... does soy sauce bother him? Soybeans in mayo? something else entirely? Or was it even something I ate? Maybe he's still getting over whatever mysterious thing was wrong with him Saturday. He didn't have any other symptoms, no vomiting or diarrhea or fever, though he was a little warm that day.

Monday I came down with a cold, which wiped out my energy till Thursday. Not helped by the fact that Peter likes to wake up at 4:00 or 5:00am and fuss till I feed him at 6:00. Poor child. Which means I haven't slept all that well between those hours either. Today being Friday, I'm really tired from not sleeping enough last night, but it's a different tired than the lack of energy from a cold (I think), so I hope I'm getting better.

I need to learn to accept Peter as whoever he is, and not be constantly frustrated that he's not whatever I wish he were. To learn what Paul learned and wrote of in Philippians: "to live is Christ" and therefore, "I have learned in whatever situation I am to be content." He said "Only that in every way... Christ is proclaimed, and in that I rejoice." When Jesus is everything to you, and you are his glad slave, then wherever He puts you, and whatever He gives you to do, it is okay. I can rejoice! O, to live that...