It's Our Normal

Sometimes people ask me if it is a struggle raising a child with a condition. It's a well intentioned question. It doesn't bother me and I usually answer by saying that its no struggle at all. Sure there are tough times, but when I glance at our life, I don't see a struggle. I guess you could say that I'm just used to it. You could say that being different is our normal. So it doesn't seem like a struggle. Or weird. Or anything really. It's just normal.

Clearly I often forget that we are different. Since if I think about it, it's likely not normal for a parent to have a "favorite anesthesiologist" or to know three genetic doctors and a bunch of specialists. And if I think about it, I could make quite a list of our adopted habits that we have come to know as Ryan grows up. But for us, it just seems normal.

It's so easy to forget. After all, he is a six year old boy. And a pretty typical one too! He has amazing friends, goes to school, is obsessed with cars, plays nonstop and even finds time to bother his sister. In fact, it's safe to say that unless he is sleeping, at school or watching NASCAR, he's likely throwing a ball. Up. Down. Up. Down. Again and again. And again. He's a pretty happy kid. It's easy to forget that he is different. I see Ryan. That's it.

Then there are days like today. I took part in a "rare condition survey" in which I was asked questions about life with a child that has a rare condition. I caught myself having plenty to share. Times like this are an interesting wake up call. Despite the fact that our normal works great for us, perhaps I need to consider what lies ahead. Unfortunately, Ryan's normal will always mean a giant world with things literally out of reach. It will be a life with stares and silence as he merely goes about his way. It could also mean medical challenges. This is when my answer to people's question could be answered differently. This is when I would be tempted to say YES. This sucks ...

However, it doesn't suck to take a kid to specialists. Really. It doesn't. Since, ultimately, it's for Ryan's health. And it doesn't suck to make changes around the house for him. So we have a stool obession and pointers next to bathroom lightswitches. No biggie. It doesn't even suck when he can't partipate in some of the things his friends do. Ok, maybe that sucks a little. Yet, he manages.
But it DOES suck that I have to teach my six year kid how to handle the cruel. That his happiness relies on confidence and a thick skin. And it sucks that his five year old sister bears the weight of these challenges too. So I guess I could answer that it does in fact suck. But why? What is the point? In all of the questions I answered today I heard myself share the rough stuff. But I also heard myself tell what followed the challenges.

Ryan may turn heads from time to time. That doesn't have to be a bad thing. In fact, we meet a lot of nice people when we are out and about. And sure, Ryan has met some unfortunate opinions alerady in his life, but he sure weeds out those that aren't exactly "friend material" in a hurry! Our friends are proof of this - we couldn't be luckier with the amazing group of friends we have in our life. And yes, Ryan has had some tough times medically. But it all resulted in a healthy and thriving six year old.

So, maybe it IS a struggle to raise a child with a condition. But my answer remains. Nope. Nothing too rough. Nothing exceptional either. Our life is normal. Just how we want it to be.