Thursday, March 26, 2015

The Day After CP Awareness Day....

Yesterday was Cerebral Palsy Awareness Day. I thought about it all day as I often do. I knew I should blog but honestly, it was a day where I didn't feel like celebrating Cerebral Palsy.

If you have been here for a minute or more, you know that I think my four kiddos are pretty stinking amazing. And CP does not stop my boys from grabbing life and running with it -- except you know, Benjamin ROLLS with it. And yes, if you ask them, they know that while CP does not define them, it has probably made them the men they are -- and I adore the men they are.

But sometimes, I want to post Facebook pictures like my friends do. Sometimes, I want them to have the sports photos. Or the prom pictures. And yesterday, I just wanted Benjamin to be able to embrace college life with the same fervor that Claire and Mason can.

So as my news feed blew up on Facebook declaring the DAY. And all I wanted was to pound my fists and scream that the thing I am aware of most this week is that I want my super amazing, obstacle-overcoming young men to NOT have Cerebral Palsy.

Because in spite of all they overcome, there are still very real challenges. Typing papers is hard for Benjamin. Living in the dorm will be a challenge for Benjamin. Navigating campus will require a lot of effort for my Benjamin.

And that is just the stuff that I can type about. There will be so much more.

And my talented, driven son knows this. He knows it. And it is weighing on him. I can see it. The strain is palpable. He is worried. His attitude towards everything is affected. And I can not fix it. I can assure him that we will put everything in place for him to be successful. I can assure him that we can arrange for  him to live on campus and put the necessary assistance in place to do that. But it is frightening for him to think about -- it is frightening for ME to think about. And it is just not as simple as choosing a school and packing your bags. AND I WANT IT TO BE THAT SIMPLE.

Furthermore, Mason continues on the quest to get to the root of this awful pain he is living with. We are waiting on tests, wasting time on hold with scheduling departments, and feeling frantic that we need answers and solutions and a plan in place before August!

So Cerebral Palsy Awareness day happened and I guess what I want to say is that CP -- the most common motor disability in children --  is hard. It is hard when you hear the diagnosis. It is hard when you take your itty-bitties to multiple therapies a week and micro-analyze every single movement in hopes that it is a milestone breakthrough. And even after you think you KNOW how CP affects your child, it is STILL hard as you attempt to navigate the academic, medical, emotional and social waters as your child grows. It is hard.

And though my glass is always is not filled with false sunshine proclaiming all is right with the world, when in fact, all is not right. So when you see these beautiful smiling faces on my four, know that they are overcoming every minute of every day. And know that like them, the more than 800,000 Americans affected by CP are overcoming every single day. (And just so you know, that is about 1,600,000 American parents knocking down obstacles and working to make their corner of the world a bit more accessible!)

Carol - The Blessings Counter


GreenGirl said...

I share your sentiments.
We recently came to know a young college student who was dealing with blindness and she was telling us just how scary it is to be in college by herself. It take so much bravery and courage to do the daily tasks that our kids do! We are rooting for you Benjamin, Mason, and Claire...

Kristin said...

Praying for Ben as he transitions to college (and Mason, Claire and mama too!)