By: Rebecca Fontes
My son, Jayden, was diagnosed with cerebral palsy around the age of two years old. The Reader’s Digest version of the story goes like this: I delivered my son at 39 weeks. At birth, he had APGAR scores of 8 and 9 and except for being a bit colicky he was fine. Until one month later.
I was in downtown Wurzburg, exploring the expansive grounds of the Residential Palace, when Jayden’s behavior changed. Most notably, he wasn’t crying. At first I was relieved. I thought maybe the colick stage was over. However, it quickly became apparent that something else was amiss. He wasn’t simply not crying, he was not eating and was very listless and unresponsive.
I put him in his carseat, folded up the stroller and rushed to the emergency room. Luckily, I was about 5 minutes away from the closest American hospital. Soon after our admission, Jayden was rushed off to a nearby German hospital in an ambulance, while I followed in my car. Clearly, he was going to need more than baby Tylenol.
The doctors soon told me that my son had contracted a particularly nasty strain of meningitis that had caused significant damage to his brain. He was still a newborn, so the future was uncertain. But I refused to believe that the future was bleak. With so many unknowns, it could be good or bad.
Overall, the present is good, but it’s not easy.
As any parent will tell you, raising a child is hard work. Raising a child with disabilities, without a father, and while serving in the military reaches exponential levels of difficulty. Not that I’m complaining, because I love Jayden and I wouldn’t trade him for the world. Also, it helps that I’m no longer in the military, or a single parent like I was for the first 8 years of his life. Things can still get emotionally difficult though. There are times I wish my son could run around and play with the other kids, rather than kids having to approach him. On the other hand, I can’t imagine him any other way.
Things aren’t always easy. Jayden can’t walk, talk or go to the bathroom on his own, but that doesn’t mean he won’t eventually. He CAN play independently, and use some sign language to communicate. Despite his difficulties, I have never met a more spirited child, or person for that matter, than Jayden. He is always full of happiness and smiles. While other children are throwing tantrums in Wal-Mart because they aren’t getting candy or new toys, Jayden is continuously smiling and laughing. His smile is beyond cute. Of course I’m supposed to say that, right? But seriously, no smile holds more joy than Jayden’s. Don’t get me wrong. He’s not exempt from throwing tantrums, but I don’t allow the behavior.
People have difficulty grasping the concept of a poor disabled baby being prohibited from “expressing his feelings.” I have never regarded him as “diffferent” or “not normal.” I refuse to further disable him by showing pity towards him. He doesn’t feel sorry for himself, so why should anyone else? As far as I’m concerned, Jayden is a normal child, who has cerebral palsy.
The future is still unknown, of course. Everyone’s is. But there’s no reason to think it doesn’t hold great things.