After Max’s birth, my husband and I were bombarded with stories of miraculous healing. Stories of kids who had very rough beginnings then caught up quickly to be “normal” by age two or three. Other friends and family members would tell me that they were praying for miraculous healing for Max. They were praying that he would be perfectly “normal.” Don’t get me wrong, I understand the sentiment. I appreciate these people trying to give me hope and encouragement. But my son isn’t like all those other kids – just like all those other kids weren’t like each other.
I get really frustrated when people tell me stories of miraculous healing. I think it’s because it’s just so easy for other people to tell nice stories and pray big prayers. But the fact is. Raising Max isn’t easy, it never was. People don’t know what to say or do so they tell me this story they heard that will make me feel better because they lived happily every after. And if it doesn’t end up happily ever after for me they will just sneak out of my life because they probably can’t handle all the drama. Don’t get me wrong, I’m sure if I were on the other side of the situation, I wouldn’t know what to say either. And I’m pretty sure I still wouldn’t know what to say to someone in my situation. But it is hard for me to take all the easy hopefulness around me especially when most of the people who are the most “hopeful” have no idea what taking care of Max is like. It’s all well and good for some friend of my parents to pray that Max will heal to perfectly normal, but I’m busy hoping he’ll smile at me one day. Or sit up on his own. That he won’t need a ventilator again. Being perfect isn’t important to me. There are so many other things that I hope for.
Max needs to be celebrated for what he is and for what he has accomplished. He survived a very traumatic birth. That really is miracle in and of itself. His immune system works great. His lungs, heart and other major organs are doing well. I recently listened to a talk by Amiee Mullins about disability and the many negative connotations we have with the term that supposed to be “politically correct.” I much prefer the attitude Kevin Kling shared on APM’s “On Being”. Instead of disability meaning unable and focusing on what can’t be done, he points out that the prefix dis- is associated with the underworld – the place of shadow and reflection. He says that disability doesn’t mean inability, but rather “able through the world of shadow and reflection,” and “having a foot in both worlds.”
This idea makes a lot of sense to me. I will never understand my son on a certain level. I will never fully know what he’s experiencing, because he’s experiencing life through that world that I can’t be a part of. He’s misunderstood because he’s between two worlds, not because he lacks ability. I struggle to think of him in this way. I worry about people staring at him, being disgusted by him, and making fun of him. When I focus on that its very discouraging. When I try to focus on the idea that he is between two worlds that is more encouraging to me than a child turning out perfectly normal. Again, this is very difficult, but I’m willing to work at it. I believe it’s important for him to be celebrated rather than pitied. His abilities embraced rather than changed.