Jun
1

I wonder.

Duchenne Muscular Dystrophy

I wonder.

As I look at your sixteen year old self I wonder to myself…

I wonder how tall you would be without 11 years of daily steroid use that stunted your growth.

I wonder how it would feel if you got your drivers license and I was a passenger while you drove.

I wonder what it would be like if you didn’t do a driving simulation to see what hand controls/adaptations were available. I wonder if you didn’t have that appointment with a callous and crude OT that belitted you and asked you “can you even hold a steering wheel” and then told you that driving wasn’t  in the cards for you; I wonder where you would be driving to on a Saturday night.

I wonder what it would be like to not have conversations with you where you tell me that your soul is pure and maybe that’s why you don’t have to be on this Earth for long.

I wonder what it would be like to see you run around or ride an e-bike. I wonder what it would be like to not watch your legs shake consistently while you simply try to stand up.

I wonder what it would be like to freely travel the world with you without a million worries if there will be a handicap vehicle available, if there are ramps, or if the location is accessible.

I wonder what it would feel like if the world was accessible.


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