CP and me

This is a post I have written for a friend’s blog for CP Awareness Month. Check out her blog at AZ is Amazing

Cerebral Palsy is not a disease. It is an “umbrella” term that covers various conditions that lead to equally varying disabilities. It is primarily caused by brain damage that can occur in many different ways. It is not curable, it does not get worse, but there are many therapies and treatments that can improve function in people with CP.

I could go on, explaining scientific aspects of CP, or quoting statistics, for quite a while. And that would be very informative, honestly. But what it cannot do is tell you what CP is really like, or what it is like to care for someone with CP. Because these people are not scientific facts or statistics, and they are not their diagnosis. They are our children, our friends, our family. They are individuals, all of them, with incredible lives and amazing stories, each unique and inspirational.

I will tell you about what Cerebral Palsy is in my world:

My six year old son was diagnosed with severe brain damage when he was three weeks old. He was born six weeks early and spent the first six weeks of his life in a Neonatal Intensive Care Unit (NICU). Ironically, we brought him home for the first time on his original due date. His father and I had no indication that anything was wrong after 34 weeks of a normal pregnancy. So the emergency C-section and his swift transport to the Children’s Hospital of Philadelphia (the nation’s number one children’s hospital) took us by complete surprise. This was the beginning of my initiation into the world of special needs.

The initiation is rigorous, tedious, tiring, emotionally, physically, and intellectually draining, and just plain old scary. It is truly one of a parent’s worst nightmares to see your child with wires and tubes coming from every orifice, several veins and arteries, and even his yet-unhealed belly button. Then factor in that he is heavily sedated, and sometimes in an ‘induced’ coma, and has no idea you are even there. Testing and treatments abound, and words you can’t even pronounce let alone spell soon edge their way into your daily vernacular. The internet becomes your worst enemy with all of its erroneous misinformation.

And then, the day comes when they send you home with this child and you become responsible for caring for him. You have partially completed your initiation, but you must now prove to yourself that you can do this. A daunting task when first faced with it. But for me, it only took a little longer than expected to fall into a comfortable rhythm with his care and treatments. I learned about things that I never knew were possible, let alone even existed. I picked up so much medical terminology and knowledge that people still ask me today if I am a nurse. I’m not, but I can single-handedly insert a feeding tube with a swiftness you wouldn’t believe.

Then the world of special needs throws you a curve ball. When things start going your way, that massive brain injury rears its ugly head and presents you with a new ailment. In his case, it was seizures. Catastrophic and oftentimes fatal seizures. The treatment that finally worked to get them under control: an eight week course of two daily steroid injections in the thigh. With a squeamish and mostly disinterested father, Mom had to do it herself. But it worked, and not only did it get the seizures under control and to a point where they were treatable with medication, it also gave him back his eyesight which the seizures had completely taken away. He smiled for the first time when he was 11 months old. And he hasn’t stopped smiling since. Initiation passed.

Flash forward to the present. My son is now six years old and healthy as an ox. He is severely physically and intellectually disabled, but there is not a darn thing wrong with his personality. He is a total ladies’ man, and loves all that is aesthetically pleasing (namely his young pretty aides in school…they are a must or he will have no part of it). But he gives more than he expects to get. You can tell when he enters a room, not with your five senses, but with that sixth one. And once he is there, you can’t help but absorb him with the others. Everything about him is contagious – his laugh, his smile, his raw, innocent delight, and his completely unadulterated and unconditional love. He is disabled, true, and in most ways his disabilities limit his daily living skills to a great degree. But until you meet him, you can have no idea the extent of his abilities. He can evoke any emotion in you in a nanosecond, before you have time to register it. Most notably, he can wrench pure joy from the hardest of hearts with one steely gaze of his cobalt blue eyes. That’s a gift. Maybe even a super-power, I can’t say for sure. And every time he accomplishes something I didn’t think he would, my heart bursts with a pride unrivaled.

Just over the past year, he has accomplished so much I can hardly keep track. New sounds and physical activities, better communication, particularly in showing that he understands far more than we ever thought. And just this week I learned that he is definitely my book-wormy son by consistently and accurately using his first distinguishable word: READ.

We are fortunate enough to have an amazing Challenger Sports league in our hometown, which gives him the opportunity to play adaptive and inclusive soccer, baseball, and bowling. He loves it and I love to watch him play. He has stolen the heart of one of the coaches, a young college student who has a brain injury of her own, and she is constantly checking in on him while doing a semester of study in Costa Rica.

He’s become something of a local celebrity as well. Don’t believe me? Come to the store with us some day and count how many people know him who I don’t know. Children from his school run up to him at community events and interact with him as friends and it thrills him to no end.

With the exception of his brother’s, I have never felt a hug so tight and wonderful, one that reaches right into the center of my heart. When he hugged me for the first time without me prompting him, I thought I would never be able to let go. Now he is the one who doesn’t want to let go. This is how I know he feels true love.

He is more than a diagnosis, more than CP, more than special needs. He is Jaime, and he is my favorite little brown-haired boy in the world.

"My future's so bright, I gotta wear shades."
“My future’s so bright, I gotta wear shades.”
Composing his Christmas piano concerto
Composing his Christmas piano concerto
I call this one 'Blue Steel'. Derek Zoolander has nothing on this kid!
I call this one ‘Blue Steel’. Derek Zoolander has nothing on this kid!



4 thoughts on “CP and me

  1. I know those written words of tubes, NICU, etc all too well… With my son and CHARGE Syndrome I went from never hearing about it to suddenly becoming an expert on my son!!!!
    He’s a cutie!!!
    Oh! And when they hug you for!the first time… Nothing compares to it.

    1. We know our kids better than anyone, and I’ve learned not to be afraid to question doctors and nurses. We have to be patient advocates for them. But they are awesome kids, all of them, and I feel very blessed to have Jaime! Thanks for stopping by and commenting!

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