On Cerebral Palsy Awareness Day 2018

Today is Cerebral Palsy Awareness Day. I know a little bit about this condition, as I have been surrounded by it my entire life. My uncle, who I spent a great deal of time with in years past, was born with it. So, too, was one of my daughters. There is no cure for this condition as of yet, but that doesn't mean that there is no hope. Far from it.

As I was growing up, I always knew that there was something "different" about my uncle. I did not, however, believe that there was anything "wrong" with him. Another uncle, his brother, told me at a very young age that there was nothing wrong with his brother and that he should be treated like anyone else. That message stuck with me. So much so that years later, when a disagreement between the two of us got heated, I did not hesitate to respond to physicality with physicality. My other uncle, however, was aghast. "How could you do such a thing!", he demanded. "You know how he is!" I simply responded by saying "You told me to treat him as I would anyone else! I was just defending myself!" He stepped back, blinked, completely changed his attitude, and a smile overcame his face. He knew that I was right, and that his message had hit home.

The above incident was really a minor altercation. We didn't descend into a street fight or anything, and we quickly moved past it. In fact, my uncle with CP later thanked me for NOT backing down to him in that moment. Not because he was really looking for a fight, but because he recognized in that moment how I saw him. I didn't seem him as a feeble man with a slightly debilitating condition; I just saw a man. Our relationship only strengthened because of this.

Fast forward a couple of decades and I find out that I am going to be a father. As with many a soon-to-be parent, I was equally parts ecstatic and terrified. It was a stressful time, as my wife's health was a concern, there was work that needed to be done on the house immediately, we now knew that two little ones (Twins!) were coming, and there was a good chance that the aforementioned little ones would arrive early. That good chance became reality, as our little ones burst onto the scene two months ahead of schedule. This resulted in a month long stay for them in a neonatal intensive care unit (NICU). This would prove to be both a curse and a blessing, as we could only see them for a few hours per day but our kids were monitored more closely than most other newborns. The latter would prove to be extremely useful.

During their stay in the NICU, our kids were monitored and subsequently subjected to testing that the average newborn would not be. Because of this testing, it was discovered that there was a seemingly major difference between our apparently identical twins. More tests were ordered. In the end, we were told that our one daughter had been born with Cerebral Palsy (left hemiplegia, to be more precise). The best it could be determined was that she suffered a stroke either shorty before or during the birthing process. There was nothing that could have been done. This was the new reality and we would need to adjust to it in a hurry.

My wife and I were understandably shaken. We were already dealing with all the typical new parent insanity and now there was this new curveball. It didn't help that a number of doctors told my wife that we needed to be prepared for the very real possibility that our daughter would never be able to walk without the assistance of leg braces/crutches, much less run and keep up with her identical twin. It was a lot to process. It was also very difficult news to accept. This is what the experts were telling us, though, right? They had to know more than us. Or did they?

We immediately went into research mode. Now that we had an official diagnosis, we had a direction to head in. That diagnosis also reminded us, and a few other members of my family, that this wasn't the first time it had been heard in our circles. In fact, it was the same one that my nana had been given in regards to my uncle decades earlier. We instantly felt some relief. While we were still obviously concerned about what struggles our little girl might face, at least we had an in family example of someone who overcame the doctors' educated guesses and led a happy and productive life. In the coming years, he would set even more of an amazing example.

As our daughters grew, there were obvious differences in the timing of reaching certain milestones. Interestingly, our one daughter would reach certain stages (crawling, standing, walking) and then halt her progression, seemingly on purpose, once she realized that her sister wasn't there yet. We were witnessing that almost telepathic "twin bond" we had heard so much about. It was rather amazing! As her sister finally reached these milestones, our one daughter was as proud and encouraging, if not more, of her sister as we were. The day her sister started walking, in spite of those early dire warnings from the doctors, was an incredible day for us all. The video of it still makes me cry. Every. Single. Time.

Around the time that our daughter was metaphorically telling her doctors what they could do with their prognosis for her, my uncle had taken up running. Already pushing 50 years old and having lived his life with a fairly moderate form of CP, this was more than just an average undertaking. The levels he has taken it to, though, are, in my mind, fantastically inspiring! He went from slowly jogging up and down a local trail near a beach to now having run multiple NYC marathons, with another marathon planned this year. Fortunately, not only has our daughter been alive for this but she even got to cheer him on, in person, during one of the marathons. Talk about showing a child how you can overcome just about any odds!

Our daughters are now 6 1/2 and they are both, thankfully, doing rather well. Our one daughter still has her struggles, and likely will for some time to come, but she rarely lets that get in her way. She continues to smash expectations and only her stubbornness holds her back. Even if she does try to hide behind her CP and use it as an excuse (she has always been wildly perceptive), it can just take a simple reminder of what her uncle has accomplished to give her pause. If he can run multiple marathons despite having a more severe form of CP than she does, then what can't she do? She is very lucky to have such a great role model, even if she is still too young to fully grasp how important that is.

Cerebral Palsy affects a great number of people. It is the most common form of "disability" among children, yet it doesn't get all that much press. It is a condition that is unique to the individual dealing with it, which might be part of the reason why there is no known, sure fire "cure' as of yet. As someone who has had the honor and pleasure of being directly involved in the lives of two people who were born with this diagnosis, I can say that it doesn't have to be viewed as a diagnosis of perpetual victimhood. People with CP can still do some pretty amazing things, and sometimes better than most.