Thanksgivings

We're plugging along over here – and adjusting to things pretty well, I'd say. We had an appointment with Oliver's doctor, and she was pleased that he was pretty much the same as before. There's a tiny chance he's got more of a congenital variance or abnormality rather than true Perthes, but it's not likely. We'll have enough data in January to know for absolutely certain. He has a little pain at night, but it's not too bad, though he shifts his position a lot and has a hard time sitting in a chair for a long time. He got permission to swim and to bike a little – not far and up big hills or anything, but the position that puts his hips in is good for the reforming of the bone. His range of motion is still decent – we do lots of PT exercise to make sure it stays that way, and the doc said that if she reffered us to physical therapy, the goal would be to get him to where he is now, so there's not much point right now. That could change, and we did apply for care at Shri*ners, which is a stellar orthopedic hospital for children near us.

I think we're going to confuse the heck out of the neighbors with child who takes the handicap-access bus, is sometimes in a wheelchair, and sometimes biking up and down the block! But it makes sense if you think about it – he can't do much of anything not fully weight-bearing, including walking. He can't very well use crutches over big snowbanks or on slippery streets, and in winter, I sometimes have to park halfway down the block, so a handicapped parking spot will be needed as well. I'm glad we have a little house, though, because in it, he is allowed to walk for a bit every day. The rest of the time he stays on crutches, a walker, or the chair. I'm grateful for his generally compliant nature and he's doing a great job with everything, but it does all get to him at times. He gets worried, and we have to remind him that we'll handle the details. The lift on the bus really scared him. He sometimes gets really angry and frustrated and anxious, and then he'll be back to his old self again. To me, sometimes 2 years or so seems like it will be a blip in the tapestry of his childhood, but other times it feels like a sizable theft. It's hardest of all to watch him watch his friends run and play. That makes me want to get him as much pool time as we possibly can.

One of the challenges that also really bugs Oliver quite a bit is the constant comments from adults. I think it's the crutches hanging off of his chair – people assume it's an injury or accident of some kind, and that sympathetic comments or questions are OK. And they mean well, we know that they do, but Oliver really just wants to be seen for the funny, sweet and curious kid that he is, and I think he feels like all people see is his equipment. And then there's the occasional true jerk – like the lady at the Glo*bal Market who teasingly accused him of faking his disability, causing him to burst into tears at the thought that someone would think that. I told her that her comments we not funny, helpful or appropriate, and I hope that Oliver felt I stuck up for him OK. I reminded both him and myself that there are many, many kindhearted people for every insensitive buffoon.

Last week, we went to Coura*ge Center, a center for people with disabilities to do sports, recreation, and therapy. We went to their family swim, and Oliver was so interested in all the wheelchairs, and all the pictures on the walls of people with handicaps doing athletics. There were several kids with wheelchairs at the pool. He really wants to go back there even though the Y is much closer, and I think that's because he really craves a place where he doesn't feel different. In the pool, he's just like anyone else – free in his body, but he also sees other people dealing with some of the same stuff he is. They have a weekly family swim that's not too expensive, and I think we'll make that part of our routine for now. We also need to figure out how to get both boys some lessons somewhere, because we might as well use this time to hone those swimming skills and burn some energy this winter.

Slowly, all these details are starting to feel more like just what life is right now, and less like a new part-time job. Joel and are organized and on the same page – we have a file with sections for research, medical records, school paperwork and what have you, and we work daily to have the same understanding of what needs to be done. We've had to push a bit with the school to get some of what Oliver needs a bit more formalized, but overall, they've been fantastic and incredibly kind and helpful. You would not believe all the little logistical details it requires to make things more or less normal for him – it's a lot, and his teacher has a whole bunch of other kids keeping her busy too. I've been equally impressed with the students at their school. Caring for each other in practical ways is a big focus there, and you really see that at work in a situation like this that requires a bit of extra understanding and assistance.

So we're OK, folks. We're not sitting around mourning what could be at this point, and it really is possible to get your head around something you didn't think you could and march somewhat bravely on in a fairly short amount of time. Oliver's not quite there yet all the time, but that's OK – understandable, and he has a lot of loving support to deal with that. I think it's quite likely that good will come of this, that it will shape his childhood in some positive ways as well as showing him what it looks like to overcome challenges as a family and as a community. That applies to all of us, actually. A bit of adversity can shape us in meaningful ways, whether as children or adults, even though as a parent, it's hard to watch. On the other hand, if he ends up as one of the 10% that gets Perthes in both hips, I might have a tougher time being so positive... Right now, I think that's my biggest fear, that he'll get it in the other hip in a year or two and end up with years of staggered disability and a poorer prognosis as a result. The other one is that he'll be in pain; it's hard to tell how bad that will be, but the worst is yet to come. Most kids do OK with some minor pain meds and being able to shift position a lot along with some other strategies, but some really struggle.

A couple of years I wrote what I was grateful for at about this Thanksgiving time of year – I think the above about covers it this year. There's lots, and we're not short on gratitude on the moment – it far eclipses any woe. Wishing you and yours a lovely Thanksgiving as well. Thanks for reading.