At our last doctor’s appointment, our physician said something that stuck with me. He told me that we must soon decide whether my son is going to use a wheelchair or whether he’s going to be walking. He said it kindly, but it stuck with me.
We’ve got to start thinking about the future. The path is diverging. Each pathway consists of its own unique skill sets.
If my son is going to use a wheelchair for the rest of his life, we must teach him the skills to navigate the chair. We start developing upper body strength as opposed to lower body strength. But if we’re going to commit to walking, then we must figure out what kind of walker he’s going to be in and so on.
I get it. But taking one of those pathways feels like we’re closing a door in a sense. And I’m uncomfortable with that.
I’ve always looked at my son as having limitless potential—and that we’ve just got to unlock it. But now we’re looking at the practical and moving away from the theoretical, the hopeful.
And I can’t help but feel like I’m failing him or underestimating him by choosing one over the other. If I choose the chair, will we ever walk? If I choose to walk am I limiting him based on how quickly and efficiently he might get around in a chair?
It’s hard to understand that the essence of a person has nothing to do with how they get from place to place.
But it’s also tough to be that decision maker for a 5-year-old kid. It’s hard not to worry about making the wrong choice, and focus instead on making the right choice. And there are no doors closed at the tender age of 5. So most of this is self-inflicted, but still. The immense weight of this decision is something I find a bit difficult to bear.
In the grand scheme of things, my son is our guide through these decisions. He’s our north star. We try our hardest to do right by him and do what is in his best interest. We get some right, we get some wrong, but we’re doing our best. I suppose that’s the only thing anyone can ask for.
I’ve got to remember that. I’ve got to take my own advice to heart.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.