Living your whole life in denial gets hard sometimes.

For me, it’s denying that a white tubular ventilator is the only thing keeping me alive. It’s denying that I am simply unable to perform some basic physical functions. It’s denying the fact that I am different.

My diagnoses include arthrogryposis multiplex congenita, restrictive pulmonary disease, clubfoot and scoliosis.  Surgeries have been a mixed bag, but overall they have not improved my life. My brother pulled my feeding tube; however, it didn’t hurt and I could swallow food down anyway.

Now, I try to be positive as much as possible, but getting older has been a big reality check. The differences between my peers and I are nearly impossible to ignore.

Things include having to ride a special needs bus, which is fun but a little too crazy. It includes not being able to travel to certain places. It Includes having two people follow me around all day without privacy because I can never be left alone.

Even though I mostly don’t mind some of these things, there are things I wish I could do, like playing sports, riding roller coasters, driving a car—the list goes on and on. Yet, I’m blessed for a wonderful family that has been extremely supportive.

My parents have been rockstars in dealing with all the drama surrounding my early years, which were rocky at best. When I was born, the doctors asked my parents if they were related. Then they proceeded to tell them that I had two months to live. I survived, and after several early scares and surgeries, have been stable for 12 years.

I try to be as independent as possible, as my disability is wholly physical. Unfortunately, the general public sees me as someone who has mental disabilities too. Or upon seeing me, people feel guilty about my condition and try to “special things” for me. This includes praying for me like at Yorktown Mall, and giving me stuff. The hardest is when they cry over me.

Even at DGS a substitute teacher bought me a hockey t-shirt and several other items. When I asked why, she told me it was because I was unique. I appreciated her charity, but it felt weird considering I only got it because I was “unique.” And believe me, I know what that means.

That is what makes my situation difficult; I want special assistance and help, but not always special treatment. It is finding that balance that is a challenge. Getting the treatment can be embarrassing and awkward.

Which leads me to say that while having a disability isn’t too bad, the baggage certainly is. I have three nurses plus a school aide, all with opinions about everything. It gets old fast.

I try not to be a complainer, and I am very happy with the life I live. But my life is unfortunately different than most others. Even I sometimes wish that 17 years later, I might have come out a little less ”abnormal.”

Yet, I’m glad I’m still kicking after all these years.  Considering my condition has been pretty stable, I am lucky to have made it this far. Maybe I’ll stick around a little while longer.

The point is that I don’t always need special gifts and extra prayers to be happy. Despite everything, all I want is to be given the most equal of chances to succeed.  

And there is nothing special about wishing for that.