By Trotter Cobb
At that moment, I took a deep breath.
Tears were creeping into the corners of my eyes.
The birthday candles were lit, ready to be blown out. We all would share in the honors and then the singing would begin.
Twenty-one candles that my wife Anne had so perfectly arranged, with an extra one to grow on, adorning a colorfully-iced cake that looked simply delicious.
A happy moment.
Yet amid the family singing "Happy Birthday" to my now 21-year-old son, a terrific DYRK1A guy called Trot, I was lost in thought: “If I love this young man, and I do, then this is the moment that I must begin letting go.”
Letting go, I believe, is one of the biggest challenges we face as DYRK1A parents. And it doesn't just happen at 21.
It can happen at 2, 10, 16 and points in between -- whenever our child, whom we hold so dear and have nurtured and protected so lovingly, is ready to take a step forward. A step toward whatever level of independence he or she will achieve.
Understanding that your son and daughter, in some small or large way, is about to venture off into the unknown can be challenging, perplexing, unnerving and even sad -- no matter how much you've planned.
In Alabama, where I live, and perhaps in most places, at 21 your son or daughter must exit the public school system. In our case, this is the point in time that Trot finished the programs that our local school system provides.
It was a day that Anne and I always knew would come.
What would it be like when Trot -- as well as Anne and myself -- no longer had the daily routine that gave our family such a predictable and productive structure? The unknown was at hand; logistically, structurally and emotionally. It was a moment of gulping uncertainty, the kind of moment that we, as DYRK1A parents, live with on a recurring basis.
So while this story begins with singing "Happy Birthday," I know in my heart that it is really about my fear of the unknown -- and the comfort and friendship that the DYRK1A community has provided my family and me.
Past DYRK1A conferences have given Anne and me the opportunity to talk to other parents. For the most part, we have found that the challenges and concerns we all struggle with are similar and reflect many commonalities.
One common thread, which I've smiled about at times, is that in many DYRK1A families, it seems that one parent is optimistic and upbeat about their child's future.
In our family, that parent is Anne, a woman of deep religious faith. She is indomitable, the anchor in our family and Trot's North Star.
Then there's the other parent, in this case me. Overprotective, often worried, intrusive, anxious and, at times, anguished. What will Trot's life be like when Anne and I are gone? How will he manage? Will there be people in his life who will love him?
The answers are as elusive as the flames of the birthday candles. Anne would say, "Relax. All will be fine. The candles are burning brightly." I would say, "Those candles are flickering, alone. I don't know how long they will continue burning."
What I do know is that I love this son of mine with an intensity that even out-burns the flames on a birthday cake. We who love and nurture special needs kids develop a unique intensity in our love for them; a passion for their well-being that never quits, a protectiveness that at times, as in my case, can be out of balance.
Trot is 21. He may not have the mental abilities and social skills of a typical 21-year-old, but he has a unique sweetness that powers me through my moments of turbulence; a beautiful way about him that radiates and draws people to him. In fact, he is the one in our family who burns the brightest.
Thank you, DYRK1A community, you have been and continue to be my GPS. Through conversations and friendships with many of you, I've been able to develop healthier perspectives, more informed insights and a growing sense of serenity. Our journeys as DYRK1A parents can be lonely, but if we have one another we are never alone.
So that's my story for today, except for this:
We've gotten Trot a cell phone and he's taken to it like the proverbial duck to water.
In fact, I called him the other day to chat and check on him.
“Dad,” he said with a hint of impatience. “I can’t talk right now. I’ll call you back."
***
(Trotter Cobb wrote the above when his son turned 21. He son will be 25 in July.)
