Update

Merry Christmas, everyone. This is a busy season for the family of a church musician –and this year is no exception. Somehow, though, I haven’t had the bouts of frustration I usually have this time of year – the feeling that our priorities are being pulled a little out of whack as we move from one busy event to the next or give in to the pressure to buy too much stuff for too many people. I’ve managed to turn down a couple of worthwhile but potentially hectic events, we’re keeping the Christmas giving simple and fun and not too excessive, and the boys have been overjoyed at the best Christmas traditions – trimming the tree, participating in the Christmas pageant at church (where they each got to read part of a Rudyard Kipling poem aloud), singing Silent Night at the end with just candles lighting the whole church. Oliver whispered to me as he had his candle lit, “the light represents a gift from God!” I don’t quite know how this particular Christmas, with all its stress and sometimes sadness, can feel more like what it ought to be than the same season celebrated under more ideal conditions in recent years, but it does. Something about all of this puts the season in its proper perspective -and it is a powerful reminder to me that less really is often more. We’ll spend Christmas even with Joel’s family and then head to Bryn Mawr church that evening. Christmas morning will be spent at home opening presents and eating pancakes. A few days later, my parents come to bring in the New Year with us. Lots of goodness coming our way.

That said, things aren’t exactly easy around here. Oliver has been having some pain in the other hip, and it is unclear exactly what that means. He says it feels just like his Perthes hip, which of course, is not good at all. At first it came and went, so we hopes he’d just strained it, but now it’s more often and we see the doctor again on Wednesday. Chances are, we won't know anything from an x-ray this early, but we need a plan for what can safely do right now. If he does have it in both hips, it’s a serious game-changer: he’d have a poorer overall prognosis in terms of how long it will take to heal, how likely he is to need major intervention and/or surgery, and how likely he is to have trouble in his forties or fifties. It also means he’d be a lot more disabled for the duration of the disease – probably confined to a wheelchair for all or most of the time. We may need to look at ramps; a lot of the things we’ve been able to do will not be possible, and school will be a lot harder. It’s overwhelming to even think about, to be honest, but I am continually reminded that we can do the things we think we cannot do. Oliver has good days and bad days – he is still very angry sometimes, though he puts on a good game face in public. He hasn’t been as focused in school, and he’s definitely in some pain, sometimes significant pain. I think he’s trying really hard to adjust, but it’s just really hard sometimes. It's painful to watch too - I know what chronic pain is like, and I really wish I could take it away for him.

He does have a new and much better wheelchair – it turns out the company that gave us the first one gave us the wrong size, and a crappy refurbished one at that. When they swapped it out, the difference was huge – he can do a lot more with it. It’s also slightly lighter than the old one, and with the feet off, I can just manage to get it in and out of the car. I have this complicated but (barely) workable thing going right now where I put the 15 pound transport chair in the front seat, the wheelchair in the trunk, and use the lighter chair for quick outings and the wheelchair for everything else. Last weekend, we went to the (wonderfully accessible) Works museum, Subway for lunch for the boys, then the Courage Center to swim. We took the wheelchair in to the museum and the Courage Center, and Oliver completely propelled himself, and very well. He needs the exercise and the feeling of independence, so that’s really important. It’s not as big a deal for a quick run into Subway, and using the transport chair for that saves my back one time of hauling it in and out of the car. When I do haul the chair, I balance it and then slip it over the bumper and back off of the bumper using a very slippery sleeping bag, which helps a little. Our life is full of these messy adaptations these days, it seems like. A minivan would be a lot easier, and we’re thinking about trading in our Civic hybrid for a used one, but we hate to give up our very reliable and efficient car for something that would be probably less reliable, with higher miles, and cost more to drive. We’ll see. There’s not much he can’t do with a wheelchair than an adult couldn’t – popping wheelies and all. He’s getting adapted gym class now as well, which is great – he practiced advanced wheelchair skills, learns some ball games, and really gets his blood pumping.

I’ve been really proud of Noah lately, both in how he’s doing in general and in how he’s been dealing with all of this. As anyone who knows him knows, Noah is a bit of a spacey kid – very bright, but very in his own head. He’s not always easy to communicate with – he’s a true introvert,, and sometimes he’s thinking so hard, he doesn’t even hear you, or gets over stimulated by being around a lot of people then acts kind of goofy. His teacher did mention to me that “everybody thinks their six-year-olds are immature – that’s just six-year-olds”, which gave me a little perspective on his silliness – I had lunch at their school yesterday, and I see much the same in his peers, especially the boys. Noah is doing very well in school, though, doing lots of challenging work, being diligent about his homework, helping other kids with reading, participating more in class (his teacher’s big goal for him). With us, he’s been a big help with carrying bags, opening doors, and all those little details when we’re out and about. I could not have imagined a month ago how good he would get at all that, and how willing he’d be. It’s nice to see glimpses of a new maturity in him, and he can also be utterly sweet. I found this note on my pillow the other day:

Noah never says these words, and is very selectively affectionate, but he’ll write them down and put the notes in my pocket or purse, sometimes with a piece of Halloween candy taped to them. Ollie is such a lover, but I equally cherish Noah’s ways of expressing his love. I write him notes back sometimes, and he loves that too. That kid is just head over heels over the written word!

We see the doctor again tomorrow, but I doubt she’ll have a clear answer about Oliver’s “good” hip, as it’s not showing on the x-ray yet. This is typical, so it may be months before we have enough data to predict much What we will likely have is a recommendation about what he can and can’t do for now. We’ll keep you posted. Thanks for all your love and support.