Eating That Elephant

I wrote this post at the end of August. I think I can finally post it now…

I keep thinking I will write an email to some people, notably our doctor and a support group that I may have outgrown, saying that our son is doing great. But then another part of me says, “don’t jinx it! You know better than that!!!”  My son would say I’m being superstitious.

For those of you that don’t know us that well or follow my blog, which is probably most of you since Facebook has revolutionized the art of sharing blogs with your 300 best friends since I wrote most of the older stuff, suffice it to say this kid doesn’t have the easiest path in life.  It’s not the hardest, either – as I remind him frequently he is incredibly lucky in so many ways, not the least of which is to have us as parents.  (Yes, I get that, and am not ashamed to admit it –nor to occasionally bonk him over the head with that fact when needed).

The thing is, there is this strange dichotomy in my approach to thinking about his future.  First, I’ve become an expert at trusting that he will pick up the skills he needs, on his own schedule, or at least trusting that enough not to panic in the moment .  This trust had to be built over time (with a fair number of freak-outs along the way).   There were times I wondered if he would ever get dressed on his own, shower more than once a month (you think I’m joking, don’t you?), make his own food, or any number of things.  And, somehow, though perhaps later than everyone else and with lots of stress all around, he is doing those things.   So I diligently (and with lots of mistakes), apply this trust to knowing he will someday have a job he will enjoy, an education that will be sufficient in some way or another, and relationships that are at least semi-functional.

But on the other side of the coin, whenever there is progress, I’ve learned not to get attached to it, even as I continue to push forward and do everything in my power to help line up the stars for this kid. I don’t count on good days predicting more good days, because it’s so hard for both of us when it backslides, and as you know progress is never even and steady.   And sometimes, I try to avoid those inevitable dips with superstition.   I mean, if everything goes downhill for the next week who is to say if it was running out of B6 and phosphytidalcholine or adding extra hydroxy-B12?  Maybe what really was the cause was this blog post!  (Especially if changing those things back doesn’t bring an upswing, which is usually how it goes with us).

But the truth is, he is really, truly, doing well compared to a couple of years ago, even to last year. He is handling a rather full schedule of activities (though not half as grueling as school, undoubtedly); he is becoming more and more self-sufficient by the week; and he is growing up to be a well-spoken, almost (do I dare say it and tempt fate?) even-tempered young man.  We have made much progress and discoveries on the medical path, and I’m allowing a part of myself to hope that he will overcome this completely someday.

One of the things I’m also learning, at what seems like a horridly slow pace, is to trust myself. Trust that I can deal with whatever comes tomorrow, even if it’s not what I was expecting.  I’m learning to trust my gut when it gives me good information. And if superstition helps me with that, perhaps there is nothing wrong with that.  So I think perhaps, I’ll write this but not publish it quite yet.  Let’s see what the day brings, first.

(Since I wrote that, we did indeed have a few dips into difficulty – but we’ve pulled through each time. It’s all about trust, I think….)

Hitting “Publish” now.