Understanding Anxiety
My son is a newborn. Technically, he's ten weeks old, but he was born nearly ten weeks early.
He's perfect in every way. I know I'm biased, but he's a gorgeous baby. We're blessed; other than some stork bites, he's flawless.
We know that's not exactly true, though. My wife and I learned at about 20 weeks into her pregnancy that he would have some serious issues. Multiple organs aren't quite right, and he has a specific genetic deletion on chromosome 22, called Phelan-McDermid Syndrome (PMS).
On the surface, my son is perfect; underneath, he is fighting. While we are not dealing with his medical conditions, my wife and I feel the same. We look like we're handling the situation perfectly, but underneath we feel crippled with anxiety.
His condition isn't manifesting in any particular way other than some minor organ anomalies. He literally is a perfect baby. But when does that stop being true?
PMS is incredibly rare. While it's difficult to get an exact number of diagnosed cases, the best guess puts it somewhere around 3,000 cases diagnosed worldwide.
No one fully knows what to expect because of how rare this syndrome is. In fact, in our meetings with one of the leading children's genetics doctors in the United States, she told my wife and me that understanding the exact deletion is an imperfect predictor of how the syndrome manifests. The range of possible outcomes is vast — from being able to function in society and hold down a job to needing whole-life care.
We don't know what to expect. That's where our anxiety comes from.
Will he ever learn to walk? Will he ever learn to say "mama" or "dada"? Will he be able to go to school? How will the other kids treat him? His condition makes communication difficult or impossible — what if someone takes advantage of him? What will he do after we're gone? We love him so much, and we do not want him to experience additional suffering.
My wife is a defense attorney, and I am a business analyst. Neither of us is used to situations where we cannot affect the outcome somehow. We assess, develop strategies and plans, then execute. Here, we feel powerless.
All we can do is focus on today. All we can do is celebrate the little victories. All we can do is love him fiercely and with everything we are.
As I'm writing this, he is next to me in his bassinette, sleeping peacefully. In a bit, he will wake up hungry for milk. Every time he eats, I adjust his burp cloth over him to protect his clothes. When he feels the burp cloth, he smiles so big — he knows it's nearly time to eat.
He doesn't worry about the future. He just loves his momma and poppa, and he knows he is loved back. Every day we will fight to keep the anxiety at bay and live in the moment, loving him with everything we are.
