We have an a wheelchair evaluation scheduled for next Monday and that has stirred up some interesting conversations around here.
To me, this is something that was a long time coming and quite expected. We already have a rental chair that we ended up mostly buying ourselves – have had it for almost 2 years. She doesn’t use it as much now as she did pre-Diamox, but she still uses it on a regular basis. For when she can’t walk long distances (well, medium distances – I guess it is all relative. Basically, a trip to Walmart or going to a doctor’s appointment at the hospital requires the wheelchair – for her, those are long distances. Something like a trip to the zoo or an amusement park – forget it. Most days she wouldn’t be able, even in the chair.). For pain relief. For pacing. For joint preservation. For dealing with Orthostatic Intolerance/ POTS. For babying those frequent injuries since there isn’t a set of crutches on earth that she can use without damaging herself. In the aftermath of an injury, she would be essentially bedbound or homebound without a chair.
Em requested/demanded the original chair. She had rolled her ankle badly and literally could not bear any weight on it. She said,’ I have to have a wheel chair’, so I got a script from the doctor. I took about 2 minutes to freak out about it and then just got on with it. 6 months or so later, down at Cincy, the OT and PT had pointed out that she needed a better chair and Andrew and I agreed. At the time, Em was pretty resistant to the idea, so we didn’t push it.
Em has recently requested a custom wheel chair and I am now pushing for it. Maybe she won’t need it forever, but she does now. When she says she needs it, I have to respect that. I don’t love the idea of a wheelchair, but I think Em and I have simply been down a long road that has brought us to a basic acceptance that this is her reality right now.
Andrew, not so much. In September, it will be three years since her big dislocation that started this journey and Andrew is apparently just now realizing that the EDS is for keeps. I think he has done his very best to bury his head in the sand, even while going to doctors appointments and discussing PT and meds and wheelchairs. Actually, it would probably be more accurate to say he buried his heart in the sand – I am pretty sure his head gets it, but his heart has been figuratively plugging its ears and chanting ‘I can’t hear you, I can’t hear you!’ like a 4 year old this whole time. I think he was convinced – or wanted to be convinced – that I was overreacting or just plain crazy and the doctors were just being pessimistic or just plain wrong; above all, he wanted to believe that she would grow out of it. He is just now starting to face reality – so he is at least 2 years behind me and Em in the acceptance department.
So, when I casually said, ‘We have a wheelchair eval scheduled’, he didn’t just go, ‘Oh, ok. When?’ like I thought he would. No, he went the I-don’t-want-my-kid-in-a-wheelchair-and-she-shouldn’t-need-it-and-this-might-be-the-end-of-the-world route. While it was a tad bit bewildering, his reaction was not wholly unexpected. (It was, however, quite ironic considering he has worked in PT for almost 20 years.)
While he is able to nod knowingly at a PT appointment and professionally say what features are needed in a wheelchair, that is not at all the same thing as the heart accepting that your child is facing a lifelong medical condition that will do its very best to defeat her at every turn. Not an easy thing for a father to accept – especially when he is quietly battling the same condition. So, I have a lot of sympathy for his grieving process.
But, life marches on and she needs a wheelchair that actually addresses her needs, whether we like the idea or not. So, Andrew is likely going to be playing catch up for quite a while and it will probably not be a pretty sight – he is being dragged kicking and screaming towards acceptance, for his own EDS issues, as well as, his daughter’s issues.
Bottom line, Em is accepting and even a little excited about what a ‘real’ wheelchair will mean for her life. So, as parents, we need to suck it up and do whatever is best for her. If that means being happy about getting a custom wheelchair, then so be it. When your kid starts incorporating wheelchair accessibility in her plans for redesigning her bedroom, I am thinking that the least you can do is be as grown up as she is about the whole thing.
Easier said then done, most likely, but what other choice is there?