Thursday, October 27, 2016

The Overly Dramatic Medical Family with the Wheelchair

Here we come into your event or store and low and behold...what's that we are getting out of our car...a wheelchair!

What on earth? Who in the car needs the wheelchair? The boy? What? Why? That family must be over the top or something. He looks fine. He just walked to the wheelchair. He's even laughing and talking! Gosh, well they must just be crazy people or something...He should walk. They are nuts.

This post is for all the parents whose children use a wheelchair and for people who still question why on earth our children are "Gasp!" in a WHEELCHAIR? (you must be kidding!)

My life over the last two years as a Mom is not one that I would ever wish upon you (even though you are really ticking me off....). I am numb at this point frankly. I'm not crazy. I'm actually a marvel of instincts knew that something really wrong was going on with my 9 year old.

Many, many people looked me in the eye during his early childhood and told me that he was just fine. But I had some lingering worries. Why did he drag himself to the car after amusement park days? Why did he moan and grab his head from headaches just after being in Target too long? Why did he limp at the zoo? Why did he walk very very slow out of the mall?

Max at the Brookfield Zoo in Chicago in 2013 with his sister and Dad. He barely made it back to the bus as he couldn't run or walk fast.
Very quickly,  he would  get very hot and sweaty, and would run out of energy. Like at the end of year preschool picnic...

At the gardens we visit in the summer...
and after dancing after the MAGIC convention, where we needed to take him back to the room.

We took my son to his doctor when his teacher told him that although bright, he'd never be able to do middle school work, high school work, go to college, or get a job with his attitude (head on desk, rolling his eyes). We took him to the doctor after that because we noticed that his penmanship had changed significantly too. His posture was suddenly poor and he wasn't able to complete his work at school. His doctor looked worried. And so began a year of testing.

It took a long time to get into the specialists we needed to see. But we started to notice that he really turned into a rag doll after about 15-30 minutes of walking around. We didn't know why. People with doctorates didn't know why. Some looked at me with a snicker and said that some kids are just low tone.

But the tests came back, and then more tests were ordered. My son had a rare form of Muscular Dystrophy called RYR1 Congenital Myopathy. He could have been diagnosed when he was younger but of course, MOST children are perfectly fine, and MANY mothers (like me) are Looney Tunes.

So. My son, the one laughing and talking (and walking!) to his wheelchair, is going into a store or into the event seated, instead of walking around or standing. He's in the wheelchair so that he can continue to laugh and talk and not turn into a rag doll and completely lose the contraction of his muscles throughout his body. By sitting, he won't fatigue within half an hour...maybe we can stay there for an hour today. (We started to leave places very very quickly, but with his wheelchair we can stay longer.) By not becoming fatigued today, his muscles may last him longer in life. Literally. If it's hot out, he may not get heat stroke and won't experience exercise intolerance after 15 minutes. (Both part of his condition).

When my son uses his wheelchair, I know he is safer. I don't have a panic feeling, worried that he is running out of batteries. He laughs and talks and almost runs me over.

So, I'm not crazy, and we're not a crazy family. We're excited that our son can hang out with us and stay out with us longer.

Max, first time ever in his wheelchair at Costco on February 13, 2016. About 35 minutes into shopping, he asks me, "Why are we here for so long?" We realized we hadn't taken him to Costco in years!

If you see someone in a wheelchair, believe us...there is probably quite a story behind it.
So you can just be numb to the whole wheelchair thing, and say hello or hold the door for us. That's what we find is nice:).

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