It has been a good day. Dominic got steadily better at navigating the left leg / right arm life. His pain was managed. Between all the books, comics, and activities people have already sent him, and moving the Xbox to the living room, he never wanted for something to do, even if he had to be stuck with his foot elevated most of the time. He received visitors, including dear friends.
And at the end of the day he announced he wanted to go outside. Getting him and the wheelchair out the front door and down the steps of our front stoop is still our biggest logistical challenge, but we did it. Once outside he announced he wanted to go to Holy Cow for a burger. (He is very pleased that, since he needs protein, iron, vitamin D, and calcium, a bacon cheeseburger is literally what the doctor ordered). So, a day or two before I would have guessed he’d be ready, all four of us were heading down the sidewalk. And though he was pretty exhausted and his leg was sore by the end, it all went off without a hitch. Now he’s back on the couch, playing Fortnite with a friend, and all feels right with the world.
Some random thoughts:
These past few days, it’s been hard to settle my mind. My thoughts are constantly racing to the next logistical hurdle, or, even if I’m trying to quiet them, speculating wildly about an uncertain future. So much more of my time is taken up with attending to another person’s basic needs — it’s like being the parent of an infant again (except a little better since this is an infant who can crack jokes that make you laugh). But for us this is temporary. Think about parents whose kids have chronic conditions, or for whom life in a wheelchair is not a temporary setback but a permanent state of being. How do they do it? They are heroes.
I’ve also been thinking about how impossible all this would be for a family without a middle-class income. Not even thinking about the actual medical costs — at the margins, we spent well over $200 the past few days on things like parking, cafeteria food, multivitamins, random supplies for the house. Even if we lived in a world where your medical costs were sure to be covered regardless of your income — which we do not! — if you don’t have the wiggle room in your checking account to handle all that other stuff, it would make an already difficult situation even more stressful.
Finally … we were out of doors for a scant hour and a half today. But in that short time, walking down the sidewalk with someone in a wheelchair, helping someone with severe limitations use a bathroom in a restaurant (because it was an emergency!), has given me a profound new perspective on the ADA. Accessibility matters — I guess I knew that in the abstract, but now I’ve felt it.