Tuesday, January 26, 2016

October - National Dwarfism Awareness Month

This post started in October.  I put in the back burner but finally had time tonight to finish it up.. here it goes:

I saw a post on FB today that October is Dwarfism Awareness month.
To be honest, I never knew such a thing existed.

I don't get on a soapbox too often but this obviously hits very close to home.
My brother and I were both born with a rare type of dwarfism that while we were short our limbs were proportinate.  There are over 200 types of dwarfism and my specific type counts for a very small percentage.

Ever since I can remember my parents took us to see pioneer in the dwarfism field - Dr. Steven Kopits.  He was based out of Johns Hopkins and later moved to St. Joseph's hospital outside of Baltimore, MD.  Every year my family would load up the car and take our "vacation" to see Dr. Kopits.  My parents wanted absolutely nothing but the best for my brother and I and when our local pediatrician couldn't do the job they found the best doc around.  I have very many memories of my days spent at St. Joseph's - all the nurses, the playroom (which had an awesome gaming console that we could play Galaga for free!) and the fellow little people that I would meet through my many visits.

My brother and I had surgeries to correct various side effects from the dwarfism.  My brother had hip and knee replacement.  I had a neck fusion to correct some slipping vertabraes that if left untreated could have caused me to be paralyzed.  I will forever be grateful to my parents for making the yearly trips (sometimes multiple trips) and wanting only the best for us.

So the reason of my rant is that knowing that October is dedicated to "Dwarfism Awareness" I wanted to share some thoughts from my perspective.

I have an amazing husband and an awesome circle of friends and family that never saw or treated me as different but alas, the world can still be a cruel place.  Even at 37 the points, stares and whispers can still get to me.   I'm not talking about children per say but older kids, teens and even adults that for whatever reason think it's acceptable to be rude and condescending. Many days I want to reply "geez, I have no idea how tall I am, how fat are you!" but I can't ever bring myself to say it.

I welcome the conversations with children since now a lot of my friends have kids of their own that are in that inquisitive phase.  I don't want my friends to be shy or embarrassed if they ask "why are you so little" or "are you a mommy".  I hope that in some small way I can help open the dialogue with them and funny enough once I tell them that "God made me this way" they seem satisfied with that answer.

So my challenge is this, and it's pretty simple - "Treat others the way you want to be treated".

No comments:

Post a Comment