That Girl in a Wheelchair

My name is Carli.  I am a 21 year old going to college.  Living a plain and simple life.

HA.

Not quite.

When I was two years old I was diagnosed with a rare disease called Spinal Muscular Atrophy.  I have type 2 and was only expected to live to the age of 5.  Well as you can tell by the mere fact that I am writing this post, that didn't happen.  And I am so happy that it didn't.  The doctors told my mother and my father that I'd be permanently in a wheelchair with very little to no motor skills.  When I was eight I got my first wheelchair.  It was the wheelchair of all wheelchairs.  It was dark purple and I could do the raddest wheelies in it.

After a while the doctors kind of just stopped putting an expiration date on my life.  I was healthy and happy and the wheelchair didn't really affect my life.  But I was just a kid.  Yeah I was the only one in my elementary school that was in a wheelchair but so what.  I knew I was different then all the other little boys and girls, but I didn't really know how.

Junior high was a bad time for me, but isn't it for everyone?  I finally started to realize just how different I was.  Kids started to stare and ask questions.  I started getting referred to as  "the girl in the wheelchair" and I didn't really like the attention I was getting for it.

In 7th grade I decided to join the Track and Field team, with the encouragement of one of my teachers.  I remember telling him "I can't do that, I'm in a wheelchair."  He responded, "Oh right, that means you can't do it.  You're right, sorry."  That simple statement has fueled my ENTIRE life.

Track was one of the hardest (physical) things I have ever done.  After each practice I wanted to quite.  To give up.  Besides no one would blame me, I'm in a wheelchair.  But each day I kept on pushing myself > literally.  There was one meet in particular I remember making it half way around the track and fighting back tears.  My arms felt like jello and everyone else had already finished the race, everyone except me and I still had a long ways to go.  That was when Steven Hymas ran up to me told me I could do it and started walking along side me.  The entire rest of the way he was that voice that kept telling me to "Keep pushing," "Make it to the finish line," and "Carli, don't even think about giving up."  As I got to the finish line, the crowd started cheering and chanting my name.

By this time I was still fighting back tears, but not tears of exhaustion or even tears or excitement but tears of embarrassment.  I didn't want to be that girl. I didn't want to be "the girl in the wheelchair." I didn't want their pity cheers.  I wanted to blend in.  Be normal.  Be like every other person on the field.

Looking back now, all I can say for myself is, I was a brat.  At that age I didn't realize the power I had.  I hadn't realized my potential.

I was just looking to be like all the other teenagers.  I didn't want to inspire.  I didn't want to change the world.

I. Just. Wanted. To. Be. Normal.

I went through my "pity me" phase.  I would get in fights with my mom and blame her for my disability.  (Mom I am so sorry for that.  I can't imagine the pain and hurt my words caused you.  I love you.)  I blamed Heavenly Father.  I got sick of hearing that "Heavenly Father gave you this challenge because He knew you could handle it."  I obviously couldn't handle it.  I was bitter.  I wanted to be a cheerleader. A ballerina.  A runner.  A swimmer.  A gymnast.  Anything but in a wheelchair.

I thank the good Lord that I got over that.  I don't really know what happened or what changed my mentality but the switch finally flip and I grasped the fact that I was more than my wheelchair.  As long as I acted like it.  I could easily give up.  Be sad.  Be cynical, ungrateful, mad, angry, bitter.  But what kind of life is that?

It would be a life of despair, lonely and hopeless.

I changed the summer of my Sophomore year.  I began to hope.  Hope for the future.  Hope for a cure.  Hope for love.  Hope for a good life.  Just Hope.

I stopped asking "Why me," and started believing in "He gave me this challenge because I could handle it."

Life didn't get easier.  If anything it got harder but I could finally find some happiness in my trials.

I got involved with the MDA (Muscular Dystrophy Association) and became their Utah State Ambassador.  I started traveling for them and speaking on behalf of all those "Girls/Boys in wheelchairs."  I became the positivity that people affected by MD needed.  I started to see myself as Carli, not as "the girl in the wheelchair."

I graduated High school, with honors.  I got accepted into The University of Utah.  I joined Delta Gamma (a Sorority-the best Sorority at that).  I made friends.  I joined clubs.  I got involved.  I started dating.  I started to love life.

In the past twenty-one years of my life I have been given opportunities people couldn't even dream of.  I've crowd surfed in my wheelchair, been on TV, ran for Senior Class President of my University, received scholarships, volunteered in Kenya and so much more.

Oh how different my life would be if I kept that negative mindset I had when I was younger.

I am still known as the girl in the wheelchair.  But now I am so incredibly proud to be that girl.  I am not just a girl in a wheelchair, I am THEE girl in a wheelchair.

I still have my hard days.  There are times when I hate having SMA and there are times when I still wonder "why".  But they're just moments, not days, not years, not a lifetime.  In my mind there is no point in asking "Why" because it doesn't fix the problem, it just creates more.

I know everyone has something that they have a hard time dealing with.  Life is such a pain.  It is so hard.  Things happen to us that make us bitter.  We all have a reason to give up.

Don't.

Never stop believing in hope.

 But give yourself time to be sad, to be angry.  But just a moment.  It's part of the process.  But don't waste the beautiful life Heavenly Father gave you on asking "Why".

There is beauty and magic all around you.  There is love and inspiration.  There is a reason we are here, doing what we are doing.   You might not know your purpose just yet, but keep looking and searching.  You'll find it.

I found mine.
Mine is to give people hope.

Wake up every single morning and be grateful you woke up.  Be grateful you have air in your lungs and a beat to your heart.

Thank the Lord you're here on this gorgeous earth of His.

And please don't ever forget that you darling, are something magical.

xoxo
C