the new normal

We’re plugging along through a lot of logistical details and challenges, and it’s really overwhelming at times. On Wednesday, the wheelchair was delivered. My mom came in right at that time, which was really good – it was kind of a tough afternoon. I can’t say I was at all prepared for how big and heavy a wheelchair actually is – even a lightweight youth model. When the boys were 3 and a half and we finally retired the twin stroller, they were 35 pounds or so each. Oliver is 60 pounds, so while I remember how heavy that 70 pounds was to push, I did not anticipate that this would be so much harder. A wheelchair is no stroller – it is heavy and full of hard places to hit yourself against, and awkward. Oliver really can’t propel himself far in it far– he will definitely need a push between classes. I’d thought that we could take it pretty much where we used to take the big twin jogger, but every section of sidewalk higher than about ¾ of an inch requires a stop and a careful push over, and there is no leverage bar in the back. The handles are a couple of inches too low for me and several for Joel. It is impossible to bring up or down steps even empty, or push up a steep hill, like the one to our front door, with a child in it. We can get it in the trunk, but within about a ½ inch, and only with the floor of the trunk removed. The whole thing feels terribly jerry-rigged and precarious and kind of impossible – I know it isn’t, but it feels that way right now. I have a bad back, and that doesn’t help at all. I did find out today from a co-worker that what we need to purchase is a transport chair – they don’t allow Oliver to move himself, but will allow me or Joel to get him to class and back and in and out of public places easily, and probably leave the wheelchair at school, where he can work up to some mobility with it. Maybe we’d bring it home on the weekends for longer outings. I just don’t see lifting a 45 pound chair awkwardly in and out of our car constantly. We've ordered one, and it should be here next week.

Oliver had a bit of a tougher time over the last couple of days, though he was very glad to see his Omie, and that helped a lot. The wheelchair was a shock for him – I think I’d unfortunately overpromised the mobility it would offer him, and it came as a surprise to both of us as we went around the block, how hard it was to maneuver and keep straight and go over cracks and up hills. He got pretty angry and upset in the middle of it, and really, I just felt he was so entitled to those feelings. It’s such a fine line in everything – I’ve been careful to cut him some slack when his feelings spill over and he gets frustrated, and lots of hugs and encouragement and validation, but I also think he needs some normalcy in terms of our standards and routine. I’m rather going on intuition here and it’s new territory, but I think he needs to know that there are still things that are the same – we still set the table, even if I bring the materials to him, he still needs to be respectful, he can still do his homework and feed the dog and go to school. If I thought letting him do whatever he wanted right now would help him, I’d do it in a heartbeat, but I think he needs to know some things are going on in a perhaps adapted form of what was. He’s a smart cookie – and especially good at seeing things from a variety of perspectives. I think that’s what lets him be such a little builder and engineer and so empathetic, but it’s also what’s having him mull over many worries and possibilities right now. I’m trying to make sure he knows that the big stuff, and any worrying, is the adults’ job – that it’s his job to just be a kid and do his best, and try and remember that this isn’t forever. If I’m careful of what I say in front of him, that’s why – he is the kind of kid who hears everything. We’re trying to find the balance between being encouraging and upbeat – which he responds well to – and also letting him feel what he needs to feel.

I guess I’m trying to remind myself of the same thing – that being a bit mad at the world and overwhelmed and sometimes sad right now doesn’t mean I’m not also utterly grateful that it’s not worse or forever, or that I don’t trust God or believe it will work out. I do.

A bright spot in our day over the last couple of days (besides my mom coming at what could possibly be the best timed visit ever), though also hard, was the school’s response. Joel and I had conferences anyway on Wednesday, and everyone from the school social worker to the specialists to his teacher and speech teacher pulled together to help us work through details large and small. I was so impressed and grateful. I find it rather terrifying that he’ll be away from us for 6.5 hours a day, possibly overdoing it under any one of those peoples’ care, and was much reassured. On Monday, we’ll bring him (that needs to be the plan for now, I think), and meet with the recess folks to see how we can get him some swinging time at recess every day. We’ll talk with the class about what’s going on, and answer their question during “sharing time”. Oliver will choose a buddy to wheel him around and help him to the bathroom - he can wheel there, and take a walker from the door.

Yesterday, we met a friend and her kids at the park, and gave it a whirl as to letting him do some hanging and hand-over-hand stuff (which he can do, but I can’t really lift him to help with all that well), and swinging. It went well, overall, but was also hard. I could see him thinking, realizing that he can’t run after his brother and friends, was left out of a game of hide-and-seek. It was hard for Noah too – they were both upset at one point or another in the outing, but also joyful at times. And that was rather the point, to help him start to come to grips with that before he’s at school and we’re not there to give him a hug when he’s sad.

A lot of people have thoughtfully asked after Noah – and believe me, we’re aware that this is hard for him too. I’ve been giving him a lot of little bits of extra attention whenever I can, and letting him know that he’s equally important to us and that we understand this is a big adjustment for him as well. He’s lost his racing and climbing buddy, and Oliver is getting a lot of attention. He’s been pretty sweet with Oliver, but last night at bedtime, he said, “I hate Oliver’s handicap.” Those were strong words for my reserved little guy. I did order some book from the library on the topic of siblings with disabilities, and might look for a support session or something for siblings. So much to look into…

Right now, we’re focusing on the logistical details and such, and not so much the medical stuff – mainly because we have another appointment on the 9th, and there’s not a thing that will change between now and then that could be affected by my scouring the internet, and I can do something about the practical details. We want to get both boys swimming and possibly biking (that’s a possibility when he’s at his best, as it’s good for hip range of motion and much less weight-bearing than walking). We want to find ways to be active again as a family. We’re looking into the Cou*rage Center, and a tagalong bike, and other ways he can be active and feel good in his body. I see some glimmers of hope in the new normal, and I guess we’ll just keep plugging along until we find our stride. Thank you for your love and support.