The name of the disability game is ADAPTABILITY! From City Hospital rehab four years ago to today, we are constantly adapting what we have to what we need it to be, changing our family norms to suit new needs, etc etc etc. Adapting always. And thats a great skill, in my opinion! Everything can be tweaked.
A big thing we are hoping to get sorted out is the bus. Since Brady lost all leg function, he hasn’t been able to be in the bus with us. And that stinks. We’ll live. We have a minivan, and can drive in two vehicles, but we so prefer to be together. We’re just that kind of family. A together family. Brady and I love the drive to the lake so much. Listening to good music. Sipping coffee. Crocheting with his hand on my knee. Its just our time to be restful together. Driving is also something that Brady likes to do as a way to provide for his family. The idea of driving separately to the lake all summer feels so sad.
Sometimes the options that are available won’t work. Or, in this day and age, you simply can’t get them! There are options for swivel seats that come down out of vehicles, but most don’t work for our bus because of how wide the door doesn’t open. There is the option of adding big ramps and lifts and whatnot to the back of the van, but then he’d have to ride back there as cargo, because we have too many people to start pulling seats out to make a path up to the front. We have someone on the case to find us a smaller lift option that would hold Bradys bum and lift him up, but its still in the works and likely won’t be along anytime soon.
Still. We don’t want to drive separately all summer. Thats not our style. So today Brady got it in his head that he was going to get in the bus. He got out there and made a bit of a plan ish. He got a scrap of wood and took measurements. I got him a pull saw and left him to it. When he was pretty ready to go, we kicked the kids inside, so as not the traumatize them if he fell. In the very beginning stages of this change, Brady fell once when he was out with the kids, and Laela has never bounced back :/ She still brings it up and is upset by it. So in they went.
And up Brady went!!!
Brady got this board to fit super nice and tight. From down on the ground, he stuck his feet all the way into the footwell, and heaved his bum up onto the board. As soon as his bum was off his cushion, I got in there and helped him stay on the board, since its not very wide and old really holds one butt cheek. Then he readjusted where he was holding on, and I pushed while he pulled, and up he went! It was easier than we thought it would be!!! What a WIN!!!
Getting back out of the van was also easier than anticipated! It makes such a difference that he has had some time to build strength in his arms and back. Because of that, he can do the transfers in two parts without rushing or panicking. He can get down onto the board, we can readjust for a second or two, and then do the next part.
This is not a permanent solution for a few reasons.
Reason number one. It is not something he can do solo. He has to have a second person who is capable of lifting some of his weight.
Much more important reason number two is skin. When you can’t feel your body, its even easier to just grin and bear it when things are hard or painful, because you can’t feel them. If you or I get a scratch or scrape, it aches for a couple of days and goes away. If Brady pulled into the van and scraped his body without realizing it, that can get out of hand really, really fast. Hello, infections. So this cannot be a forever solution.
And reason number three is his joints. Everything about these transfers has to do with twisting and reaching and heaving, and its just not good for him. If thats his main mode of mobility, his shoulders will quit way too soon. His back and arms won’t last. And we need them to. No one thinks of this stuff until they’re in this boat but man. It’s really important stuff.
But. For now, from time to time, this is really nice 💜 We can drive to the lake together! I can’t wait!