CP Awareness: What It Means to Be the Mama

Yesterday the boys and I were interviewed by a new friend -- Emmanuel Jenkins -- for his podcast for Cerebral Palsy awareness. A family man juggling the needs of his home while preparing for the interview, Emmanuel is smart, engaging, driven. He also happens to have CP. 

As I listened to my sons answer Emmanuel's questions, I was as always proud of them. But more than that, I was struck by their story. Yes, yes, I know their answers by heart -- Mason has always said my mouth moves as they tell their stories because I anticipate where they are going with them. But yesterday, I enjoyed hearing them speak to the way they have chosen to put their CP to work rather than working to overcome their CP.

Mason talking about disability in ancient cultures and the way he is building his future around studying this past, is fascinating. And Benjamin discussing political advocacy and ensuring we move forward in the care of a population that is often not on the front of people's minds.

Trying to get in the frame for our interview!

Today is CP Awareness Day -- officially. And so over coffee this morning, I have been thinking about our family in general, the boys in particular. I have been thinking about all that Benjamin and Mason said yesterday. I have been thinking about the effect of CP on Claire and Cate, and the away it shaped the scope of Wade's entire medical practice and career.

And I have been thinking about the ways CP has changed me. Because this is after all, my story.  My amazing wonderful incredibly world-changing triplets are telling their own story these days. They are captivating to listen to and while I will spend my life standing by to assist, they are fighting their own battles and knocking down their own road blocks. I am beaming with pride.

So I can not speak to what it feels like to have CP. But, my boys have no memory of how it felt when the doctor diagnosed them. I however, remember every detail, down to the way the room smelled. My boys don't remember those early days of physical therapy. I however, remember. I remember wanting desperately for the therapists to believe in them. I wanted the therapists to love them. I remember building relationship after relationship with once complete strangers because entrusting my little bitty babies to them, meant bringing them in to our family and loving them. 

Benjamin and Mason were living their lives. They -- and their sister Claire -- were adorable and sweet and loving and so so funny. And for me, I wanted the world to see all of that. Not their CP. And so I took photos and told their stories and made videos to send the grandparents. And then told their stories again.

And as they grew, I helped them explore their passions. Because I knew they had talents and dreams and passions that were not limited by their CP. Benjamin and I took music class and theater class. We played drums together and even figured out how to "act like a pizza" within the limits of his little body. And we played and had fun and celebrated childhood!

As hard as Mason worked to move at physical therapy, he worked equally hard at gymnastics, Tai Kwon Do and archery. We explored and tried new ways for him to soar. And when one didn't feed his passions, we tried another. Because his need to compete was not bound to his cerebral palsy.

And so, as I sit here this morning, I am tempted to label this post as the evolution of a mother. And for certain, I have been changed by the CP diagnosis. I have been changed by Benjamin, Mason, Claire and of course little Red (Cate).

But the actual truth is that as vividly as I remember the smell of the room the day the doctor told us the boys have CP, I also remember the thing that kept hammering in my head: YOUR JOB HAS NOT CHANGED.

I did not need to evolve to be the mother of Benjamin, Mason, Claire, and Cate. I did not need to evolve to parent two children with cerebral palsy. Being Benjamin and Mason's mom required me to do exactly what I had known I had to do the minute I realized I was expecting: my job is to help them reach their full potential. My job is to expose them to options and opportunities. My job is to cheer them to their personal best. My job is to remove as many obstacles as I can to make the opportunities available. And while CP presented -- and continues to present -- unique road blocks, the ultimate job is not unique to mothers of children with CP.

I believe in my boys. I believe in my girls. I will always and forever be their number one fan. And I will always fight to be on the front row of their cheering sections.

And if, these amazing grown men -- or women -- need me, I can still grab a battering ram and am more than willing to knock down some walls.