What do you do when you’re always in-between worlds?
Your child is healthy.
Your child is also disabled.
Your child is part of the world.
Your child is not.
You are caught in the in-between.
In-between being disabled and being abled. In-between being healthy and being chronically needy. Too healthy to really need help, too disabled to be left on their own.
Our children don’t become poster kids for disability because they don’t look disabled. There’s no inspiring Target ad featuring them because their disability isn’t known. There’s no inspiring missing limbs to overcome. There was no miracle recovery to shout about. There’s no cause backing them, no ribbons to wear, no colors to light up. They just are.
We parents are there with them. Doing everything all the other parents do, but in very small groups of one or two. There’s nothing for us to join because our kids don’t have the right disability, or because they are disabled. Or worse, because they are too disabled.
We watch otherwise normal kids go through something life-threatening, and make a full recovery, and listen to others proclaiming how good God is for giving that family a miracle. And while you are truly happy their child made a full recovery, you wonder, why weren’t your prayers answered? Why wasn’t your child worthy of a miracle?
We watch others get wishes granted, special accolades and trips and visits with celebrities. And you’re happy for those families, because you know they live extraordinary circumstances. But you are also painfully aware that there is no celebrity waiting to surprise your family. Your story just isn’t heart-wrenching enough. But you never say that because then you seem ungrateful for having the healthy child.
We stumble across groups touting inclusion. “Our camps are open for kids of all abilities!” – until you read that they don’t take children who need a one on one aide. You are happy there are camps and groups for disabled kids, but you can’t help but feel excluded because your kid is too disabled.
We read blogs by disabled activists – not parents of disabled kids, but actual disabled adults who write and work hard to change the world. And you support their voices because their voices are important, and their voices are authentic. But you come to realize that there is no one like your child in these voices. And you realize that people as disabled as your daughter sometimes get overlooked by the disabled community as well. But you don’t criticize, because twenty years ago, there were precious few platforms for disabled activists, and revolutions take time.
We sit in playgroups, fading into the background. We go to open houses at school, only to be contained to one classroom. We go to specialists, only to get passed over because your child, ironically, is doing too well.
We don’t speak of things because we’ll seem ungrateful for our child’s health. We keep quiet because we don’t want to seem selfish. We are the biggest team players and are constant bench warmers.
We live in-between the abled and disabled world, reaping almost no benefits of either, often forced to fake gratitude for being allowed in either.
And it’s so damn lonely.
There are no meal trains for us. No one comes over to clean our house. There aren’t organizations to be part of. And at some point, I know I gave up even trying to join anything. And as my daughter’s adulthood looms, I know in many ways, our world will get narrower.
We have survived in the cracks, between the abled and disabled world. And we do it quietly, being grateful for what we do get, and never criticizing what we don’t get. We don’t want to jinx the good we do have, and have had enough bad to appreciate that things could be worse. But it would be nice to be noticed sometimes, here in the in-between.
Here’s a shout all to all my other in-betweeners, blooming where they’ve landed.