Monday, September 15, 2014

Can we quit thinking of wheelchairs as something that limits us?

For the better part of last week, I was in San Diego soaking up the knowledge of 1000+ members of the medical community -- surgeons, physicians, occupational therapists, physical therapists, researchers -- who are striving to make a difference for children and adults with Cerebral Palsy. (You can get more info about AACPDM right here!)

It was informative, encouraging and a bit emotional as I looked around the conference center and realized every one of the people in my line of sight were trying, working, striving to help my boys. Every. Single. Person. Wow.

The conference began with an opening address by the incoming president, Dr. Darcy Fehlings. As part of her address, Dr. Fehlings opted to be bold and do something that had never been done before at the AACPDM. She asked four mothers of children with CP to answer questions and address the audience. I was privileged to be included among this group: Dana Florence, founder of an organization raising awareness and money in Canada, and mom to six-year-old triplets; Cynthia Frisina, founder of Reaching for the Stars, an Atlanta-based organization that is also raising awareness for medical research on Cerebral palsy and mom to a pre-teen with CP; Jill Chambers, an avid volunteer and mom to a 32-year-old young man with CP. We were four women facing common challenges as well as challenges unique to our children. We were four women approaching the challenges in a myriad of ways.

But really, we were four Mamas with a mic.

The night before my stomach was doing somersaults. Wade looked at me curiously and asked why in the world I would be nervous. "You love a microphone," he said. And he is right. I love the opportunity to share our story, to show all the ways God has provided for my little family in the hopes that even one other Mama would have her heart encouraged.

But this group. This group was vastly different from someone handing me a mic to encourage Mamas! This was a group of brilliant minds. Minds doing research. Minds that, frankly, know stuff and can use big words and impressive charts to share what they know. Minds I admire and thank God that they exist. Minds that frankly, might not want to hear what I had to say.

All I had was a Mama heart and microphone.

Here's the thing: My Mama heart believes in helping Benjamin and Mason (as well as Claire and Cate of course!) reach their full potential. Once upon a time, reaching that potential meant that we engaged in physical therapy, occupational therapy, speech therapy. Reaching that potential meant that we stretched and propped and made them stand. Because in my limited paradigm as a young mom, reaching their potential was synonymous with walking.

Do you know walking is defined as moving "at a regular and fairly slow pace by lifting and setting down each foot in turn, never having both feet off the ground at once?"

I giggle just reading that. My Benjamin used a walker for years -- a little gait trainer that allowed him to propel forward, as his arms rested in the troughs supporting much of his weight. The wheels allowed any forward motion he achieved to surge forward and he will be the first to tell you that it was in fact a slow pace. But he could also confirm that often -- very very often -- both of his feet were off the ground!

So as someone who had been there, done that, what I desperately wanted this audience to hear is that walking was never and I mean never ever  one of the things Benjamin thought he required to achieve his dreams. As a matter of fact, the first question my little boy would ask surgeons prior to any surgery was, "Will I still be able to talk afterwards?" That is not a typo. He wanted to know if he would still be able to T.A.L.K.  And just in case you can't grasp that -- he never once mentioned W.A.L.K.

Surgeons thought he was silly. Of course, he would be able to talk. They were operating on his legs not his voice...but they were missing the point. We -- and by we, I mean his parents, his therapists, his doctors -- were all far far more concerned with Benjamin's legs doing what WE believed they should be doing than he was. He was focused on what he knew was his strength -- and what continues to be his strength today --  his ability to TALK, to share his thoughts, to discuss issues, and beliefs and opinions!

So with my boys' permission, I implored my audience to put the child -- and childhood -- first. I begged them to research quality of life and mental health issues as ways to truly help these amazing young people and their families. And I begged them not to rob these extraordinary individuals of the precious commodity of TIME by teasing them with false promises if they spent hours, days and months in intense therapy.

When we were done, when we had answered the questions and bared a bit of our heart to this medical community an extraordinary thing happened -- they clapped, and clapped and clapped and then gave us a standing ovation.

In the days that followed, I was bombarded with people wanting to ask me more, wanting to hear more about my boys OPINIONS on appropriate amounts of therapy, surgery, appointments. I was asked to film a short video discussing some of these issues. I was asked to come home with more than one group and speak to their researchers, their parents, their community.

The appeal you see, was not me but rather to my so-called wisdom. My wisdom didn't come from research, or statistics, or any lab. Rather, everything I said was straight from Benjamin and Mason. The pearls I shared were from the lessons they taught. It was Benjamin and Mason who should be lauded, applauded and asked to speak. They are the wise ones. They are the ones living life, achieving their dreams and not letting wheelchairs or crutches get in the way.

At Trafalfar Square in London.

On campus at Mississippi State.

Another parent, Richard Ellenson, closed the conference. Richard is doing enormous things with technology to help his 16-year-old son -- and all children with CP -- and I was excited to meet him and hear him speak. But the thing that most spoke to my heart was a quote someone wrote about his son re-shaping the image of the wheelchair. With Richard's permission, I am changing it to fit my boy:

Benjamin's wheelchair is not a limit on him or his possibility in life. It is not a constraint to his dreams, his ideals or his ambition. Rather his wheelchair is the "Foundation" from which he will change the world!

If I could wrap my arms around all the Mamas in the world with the 100 million children on this planet dealing with a physical disability, this is what I would tell them: Let go of your paradigms. Determine to help your child find their strength in the things they CAN do! Don't misguide them into thinking the things they CAN NOT do are the things that define them. For dear Mamas, if we focus more hours a day making them propel themselves forward in a little walker, then we do allowing them to follow their passions, then the message we are sending them is clear: if you can not walk you are worth little.

It is a lie. Don't buy it.

Let them soar, dear Mamas. Let them fly with whatever aides they require...let it be their own personal FOUNDATION for changing the world!

Carol - The Blessings Counter


K said...

GORGEOUS post. Absolutely breathtakingly gorgeous.

Jamie said...

What an amazing opportunity! I couldn't agree more! Off topic, but
I had the privilege of meeting Claire at branches co-op. Tami, our shared PT, had told her about us and she came by to say hi. She has an amazing heart!