By Karenlyn Barone
No one asks the question, "Who wants a baby with a cleft palette, a brain touched by cerebral palsy or a weakened immune system?" We do not raise our hands and enthusiastically shout, "Oh me, please, pick me!"
It is not a choice parents make. It is perhaps fate, the will of the God to whom they pray, or just the luck of the draw. Whatever you may believe, know this - parents do not volunteer to give birth to anything other than perfectly healthy babies. And while any complications are not their choice, how they deal with the cards dealt them clearly is.
I remember lying in my hospital bed some 10 days after my son's birth. He was born in a diabetic coma at 12 pounds, 6 ounces. His first breath was given, like a gift to him, by the attending doctor. The second gift, quickly unwrapped, was the tubes that regulated his blood sugar. The ultimate gift was the life that could easily have been taken from him just moments after he made his claim to it. I counted each day that he survived as yet another gift. The new mother in the bed next to me whispered gently one morning, "God doesn't give you more than you can handle."
My thought was, What makes Him think I'm this strong?
But I was. And as my son grew, I made a choice to focus on his abilities rather than his disability.
When my son was 3 years-old, my husband proclaimed that we should
travel to Europe and witness a newly discovered mystery of faith. It would heal our son, he said, more to convince himself than me.
I chose not to bring my son to a third-world country where the image of a saint was said to be visible to those who were sick or in need, but rather to deal with what was at hand. I remember explaining, "We can travel the earth looking for an elusive cure, or we can deal with what we know. And all we need to know is how much we love our son." It didn't take a miracle on a mountain for me to know that.
Over the years I've offered words of support to two friends whose sons died much too early. My sentiments were sincere, but I could not relate to that level of pain. To this day, years later, I often think of the courage of those families, and I am inspired to remember that it is not of their choosing to have pain, but it is their choice how to deal with it. Both families are models of courage and beacons of love, even in their loss.
I have learned that we can't choose to ignore the dreaded diagnosis of a sick child. We cannot close our eyes and wish it away, but we can choose the course our pain takes. It can drag us through the mud, or shine in us as bright as a halogen of hope. Rather than slip into despair and drown in desperation, my friends paddled above the pain and floated on hope. The families anchored themselves in love. They chose patience instead of panic, resolve instead of resignation and hope instead of helplessness. And they continue to make a choice every day to be positive. Let me tell you, that kind of spirit is contagious.
People ask me how I have dealt so well with my son's cerebral palsy. I tell them, "I wasn't given a choice, but I did choose how to deal with it." When I'm asked why I didn't give up when the doctor who assessed my son at 18 months told me to find a nice residence for him, I reply, "That was not a choice for me. Dealing with my son, exactly as he is, was my only choice."
You see, although I didn't raise my hand and ask for a child with a disability, I wouldn't change him for the world. And having my son has helped me change the world. At work, they laughingly refer to me as the "keeper of the handicapped." Am I more sensitive to this often forgotten population? Absolutely. Am I indignant when they are regarded with ignorance? Damn straight. But I have chosen to embrace my son's differences, not long for the perfection that I can never hold.
Trust me, I wasn't always this enlightened. Years ago, as I pushed my son through Disney World in a wheelchair, a woman snickered behind my back, "Yeah, like he's crippled. She's just doing that so they don't have to wait on line."
I very calmly turned around and offered her the wheelchair, so that she might push one of her own healthy children along and see how it felt. Embarrassed, she turned away in silence. I broke down.
My son looked up at me and, with his young wisdom, said, "Don't cry, Mommy. I don't mind." I chose the wrong path that day. I chose to belittle myself and my son's plight. I should have taken a higher road. And because of him, since then I have.
I believe it's all about choice. How we deal, how we react and how we respond. I've made a choice to share these thoughts, in the hope that you never have to choose, but if you do, take the high road. The air is much better up there. It's full of joy and acceptance, celebration and love. I don't know about you, but I'll choose that road every time.
Comments? KBarone@liherald.com or(516) 569-4000 ext. 202.
