Ever since Trey was diagnosed, I’ve had issue with the word disease. I don’t like it. It makes MPS II scary. It makes MPS II contagious. It makes MPS II something you want to avoid. I don’t want my beautiful child to be someone you avoid. He is fabulous and I haven’t seen anyone else love life more than Trey. He has so much to teach us. He is happy, accepting, helpful, concerned, giving.
But there’s something else that also makes people avoid Trey. Difference. Trey is different, and I’m fine with that (I’m different in a different sort of way :-)). I just wish the rest of the world would be too. Trey has hearing aids. He doesn’t always understand what you’re asking him the first time. He has a lot of scars on his body from a lot of different surgeries. The biggest difference I notice between him and other kids, however, especially as he gets older, is that while other kids (and adults) notice difference and are wary or scared of it, Trey is completely open to and accepting of difference. He never grew out of his openness and acceptance of people. Little kids will see and ask what those colourful things in Trey’s ears are (hearing aids- they help Trey hear better just like your dad’s glasses help your dad see better!), and once they know and understand this difference, they’ll get busy playing with Trey. Little kids don’t care about difference. They may notice it, but it doesn’t concern them. Big kids (and adults) will stare and then avoid or exclude.
I’ve heard it said a few times in our MPS community, that it would be easier for our kids’ brains to be affected, so they don’t have to understand and go through all the pain that it is to live with MPS. From what I’ve heard, MPS can be very painful. I don’t live Trey’s life, so I don’t know his daily pain, but even with all the surgeries he’s had, that can’t be fun. But, that’s not what these adults with and parents of MPS II kids are talking about. The pain they’re talking about comes from being different and what being different means in our society.
I just read an article quickly shot to the top of my all time favourites, here is an excerpt: “You have one of two reactions when you see someone who’s different on the street. You either stare, or you look away. But what if we provided an opportunity to steady your gaze long enough to see beauty in those gorgeous eyes, not disease.”
If we as a culture, can learn to see the beauty in all of us, this world will be one rockin’ place to live. Let’s hold onto the openness and acceptance that we are born with. Or for those of us who’ve lost it, let’s bring it back. Let’s be more like Trey. Here’s a link to the article: http://www.huffingtonpost.com/2012/10/18/hunter-syndrome-hunter-in-focus-positive-exposure_n_1971717.html#slide=1651953
