Sounds familiar, right? One of the first things that can happen when you have a child with a disability is people become uncomfortable being around you. I’m not sure if it’s because they think it might be contagious, or because they don’t know how to cope with their own feelings about it. There are a random few who think (some will even tell you) that’s it’s karma, that you somehow brought it on yourself through bad behavior (in a past life, of course) that the child is here to “teach you” some cosmic lesson or a personal favorite “God won’t give you anything you can’t handle.” (There are a number of blogs that discuss the possible origin of that last saying) Worse, it can be isolating for your child, as well as any children you have who don’t have special needs. My disabled son is an amazingly creative, funny, and intelligent individual. He’s had to live through more traumas in his lifetime (most related to hospitals and medical procedures) than the vast majority of us ever will. People too uncomfortable to really know him are missing out on so much.
It’s only slightly different for my husband. Paraplegic since the age of 12, he’s faced innumerable rejections from people, just because he has to life his life a little differently. He’s facing a second lay-off from working full-time, this time by a family member who had at one point led him to believe he might be in charge of the company some day. He’s been granted no mercy, nor has he wanted any from life or from people. He always gets right up, ready to fight again anytime he falls. I am so grateful to all the women who passed him over, or rejected him on eHarmony because he was on wheels, because I’m the one who gets to snuggle next to him at night. I’m the one who has the privilege to share his life with all its ups and downs, surgeries and victories.
We’ve accomplished so little in overcoming our prejudices in this country regarding people who are differently-abled. Again though, it is isolating. Most people don’t have accessible houses, and because home is so comfortable for us, we tend to stay in rather than venturing out.
I never know how much this affects the lives of my two able-bodied children. Whether it’s the two “crips” or the discarded foster dogs we’ve taken in (whose behavior is a constant work in progress). I hope it doesn’t keep their friends away, but I can’t really do much about it if that is their reason. Luckily, our oldest son has a friend who is a constant miracle. Even though we don’t attend church (I gave up God the day I found my son’s diagnosis on the internet), this friend’s mother set up a two-week cycle of people from HER church to bring us meals after I had major surgery. I still haven’t figured out how to thank her adequately.
We live an isolated life in many ways. Not really by choice, but because the pain we cope with on a daily basis is more than most people can tolerate witnessing. It makes us too hard to be around, despite the fact that we complain just as much about the day-to-day crap that any other family does. We are good people, and our lives really aren’t that different from anyone else’s. It’s hard to help people see that though. It’s easy to say, “we have the same stressors and frustrations you do, we just have some extra ones that you don’t.” Staying friends with someone who has watched her son learn to walk, and then watched him slowly lose that ability, is not a simple thing. I’d like to tell you it’s worth it, but it’s hard to guarantee that. Just a step at a time, or a turn of the wheel, that is how friendships go, isn’t it?
An Unexpected Life 