Monday, September 3, 2012

World Cerebral Palsy Day

While to say I celebrate World Cerebral Palsy Day might be a stretch, saying I am excited to stand and honor my amazing kiddos would be an understatement.

So tomorrow, we will recognize and honor those who live day to day with Cerebral Palsy. People like my boys and so many of our amazing friends who struggle to make their bodies do what their brain says. And we pray that through the recognition, maybe even one more person will be educated and enlightened as to what this diagnosis really means.

Benjamin, Mason and Claire were born at 28 1/2 weeks. This sweet photo of my three squished in one baby swing was our birth announcement photo and was taken in the NICU when they were a month old.

I was still on the Labor and Delivery floor the first time I heard Cerebral Palsy used in relation to my children. A female medical student was talking loudly outside my room as the medical team made rounds. She said she would never have taken medicine to stop labor if she had been me, she didn't want kids with cerebral palsy. I will never know if my amazing attending physician heard her or not, but I do know he banned those students from my room for the remainder of my 10 week stay under the auspice of protecting the privacy of my husband (who was at the time a med student) and I. But by then the damage had been done. Her words pierced my thoughts, interrupted my sleep and weighed heavy on my heart.

While I was not sure exactly what Cerebral Palsy entailed, I knew that life with Cerebral Palsy was a better option than death. I longed for the safe arrival of these three amazing babies who I already loved with all that I was...I really just wanted my babies to live, to breath, to rock in my arms.

And though they would do all of that, the next few years would also teach me much about the previously unknown world of Cerebral Palsy. 

Benjamin doing physical therapy on the bolster and entertaining everyone around.

The boys were only nine months old when we were forced to acknowledge they simply were not meeting milestones at the level their sister was. Though our pediatrician encouraged us that their development was probably just delayed due to their prematurity, she ordered physical therapy to help push them along.

Mason learning to walk with a bit of help from his sister -- and the cheers of anyone who happened to walk by (even then he loved an audience!).

Just days before their first birthday, we were given the official diagnosis of Cerebral Palsy. The next few years would stretch me further than I ever imagined and though the three faces that greeted me each morning were the lights of my life, there was also a struggle to read into each milestone -- or absence of milestones -- to what the future might look like for these amazing boys.

Benjamin and Mason worked for nine months in physical therapy to use the walker and crutches respectively so that they could WALK to Mickey Mouse on our much-anticipated Walt Disney World vacation for their 4th birthday!

Because here is the hard truth -- a diagnosis of Cerebral Palsy has very little meaning. It doesn't say your child will need a wheelchair; or be blind; or deaf; or need a feeding tube. The diagnosis doesn't say if they will talk, walk or be able to feed themselves. The doctors can speculate based on brain scans and developmental history but really, the proof is in the child himself, and no one knows until they know.

Completely by luck, we were working in Florida and therefore able to celebrate birthday #5 by walking to our favorite mouse again!

And let me assure you, the not knowing, oh my stomach tenses up just reliving that season as I type, because the not knowing is the worst part. Once we KNOW, then we can plan, educate ourselves and determine the best course of helping our children reach their full potential. But the not knowing. The not knowing was just treacherous.

Talking, walking and feeding themselves -- it always seems to be where the doctor starts. Benjamin was talking early, so we felt confident that area of his brain was not affected. Mason's speech was more delayed but we remained hopeful that he would catch up in that area -- and he did.

Walking was the next big thing. Mason was only 18 months old when he began using the walker. He was incredibly driven to move and that attitude served him well. He progressed to the crutches -- we call them power sticks -- just in time to prepare to meet Mickey at 3 and a half.

Benjamin was not as motivated to move. He was content to sit in Mommy's lap and love and be loved. He could talk to anyone and everyone and he did and that was enough. When at 3 he began using the walker, it was only the thought of Mickey Mouse that motivated him to move his feet. And even then, the physical labor was so intensive and tiresome that we knew it was not practical for long distances.

Eating was not much different -- Mason was extremely motivated and therefore figured out ways to get the food to his mouth. Benjamin had no interest. If we tried to teach him to feed himself in therapy, he fought us because he wasn't hungry enough to try. If I tried to teach him at mealtime he just didn't eat, and he could not afford not to eat. It was a horrible Catch 22.

So for us, 15 years on the Cerebral Palsy ride looks like this: Benjamin uses a power wheelchair to ambulate. He talks and cognitively is very bright. He uses technology like voice-recognition software and the iPad to succeed in his academics and does age-appropriate work. He can feed himself finger-foods but needs help with any food requiring silverware. 

Mason continues to use his power sticks but at home prefers to walk unassisted (though this freaks his Mom out.). He talks and is also extremely bright. He also relies on technology -- mainly a computer -- to excel in age-appropriate academics. He feeds himself with no problem and eats me out of house and home.

For us, Cerebral Palsy has meant more surgeries than we really care for -- mainly orthopedic in nature. But medically, both my boys are healthy and have gratefully had few health obstacles.

Mason as Charlie Brown.

But what I really want you to know about Cerebral Palsy is this:

My boys are handsome, charming and articulate. They love the stage and have a passion for their theater company and the roar of an audience.

They love movies -- the more action-packed the better -- and video games. They countdown to college football and enjoy reading books. They love God and serve him through a myriad of ways -- including a mission trip to Argentina this summer. They love their friends, their family and Facebook (ha).

Benjamin as Schroeder.

Ready for the show -- Neil Simon's Fools.

They have bad days, can be disobedient and are sometimes frustrated with the limits of their bodies. They can also be inspiring, driven and willing to overcome obstacles with their sheer will.

After a performance of Honk, Jr where Mason played the Ugly Duckling!

Mainly, what I want you to know is that while we certainly have difficult trials and seasons that make us all weary, I can tell you with absolute certainty that the world is a better place because Dr. Moawad at the University of Chicago did everything physically possible to help me reach a safe delivery date. I can assure you that lives have been touched and changed because God in his majesty allowed my trio to be born exactly when they were and He continues to bring honor and glory to His kingdom through their lives.

Hmm, maybe we should celebrate Cerebral Palsy Day -- it has certainly brought countless blessings to my life and the lives of others!!

So, why not, let's do it:

Happy CP Day, ya'll!

Stumbo Family Story
I'm linking up to help spread the word...


Anchel K said...

I love the way you describe this : "Because here is the hard truth -- a diagnosis of Cerebral Palsy has very little meaning. It doesn't say your child will need a wheelchair; or be blind; or deaf; or need a feeding tube. The diagnosis doesn't say if they will talk, walk or be able to feed themselves. The doctors can speculate based on brain scans and developmental history but really, the proof is in the child himself, and no one knows until they know."

My daughter is almost 2 and has CP. We're in the "not-knowing" stage but it's been ok (I wrote a post about how we deal with it here:

You have a beautiful family. Thanks for sharing your story.

Twingle Mommy said...

Oh the not knowing...that is the worst part! It was so hard to hear that my son may never walk, but maybe he will. Maybe he'll be independent or maybe he'll live with you forever. Maybe it gives some people hope, but I always pictured the worst.

AZ Chapman said...

love this post

happy cp day

Glenn Roberts said...

I love this post as well. It's so inspirational to read about your story. I also like that you highlight the fact that there are different and varying levels of cerebral palsy that CP kids are diagnosed with. For example, I was reading on a blog on the Cerebral Palsy Family Network about a teenager that plays soccer and is going to a college, while living practically independent. Thank you for taking the time to share your story, as well as acknowledging World CP Day!