Way to go, Netanel

Like thousands of grandparents during the spring, I had graduations to attend. This year it was two from high school and one from middle school. As the father of five and grandfather of 16, it would take arithmetic-challenged me quite a while to figure out how many graduations I’ve attended as of today and hope to attend in the future. But one high school graduation will forever stand out for me, that of my grandson Netanel. Netanel has Down Syndrome.

Netanel’s birth a few days before Yom Kippur in 2005 caught my daughter and son-in-law and, indeed, the families on both sides, by surprise because their genetic testing before marriage didn’t reveal any deficiencies or issues, and her pregnancy was totally normal. According to the US Centers for Disease control, each year about 5,700 babies born in the US have Down Syndrome. As over 3,500,000 babies are born in the US annually, the odds of a baby being born with Down Sydrome are minuscule.

To say that Netanel’s diagnosis shocked us would be an understatement. Our family pediatrician told our daughter the baby was a “Mongoloid,” while others explained that we are living in the 21^st century and that Down kids are no longer shunted aside into mental hospitals such as New York’s Willowbrook or New Jersey’s Greystone Park where these children would be placed to live out their lives isolated from family. Instead, she was told to treat the child as you would a “normal” child and the Down child would grow as much as he possibly could.

But I was furious with God. Less than 10 years earlier we had suffered the murder of our oldest child in a bus bombing in Israel. Didn’t our family suffer enough, I railed inside my head if not out loud? To show my displeasure, I didn’t fast on Yom Kippur which came a few days after Netanel’s birth. When I awoke the next day, I felt at peace with God and myself. Overnight I realized that life is not a Monopoly game; God does not hand out “get out jail free” or “pass go, collect $200” cards. Instead, we have to keep rolling the dice and moving around the game board.

As I fed Netanel one evening in the NICU, I noticed his skin color was very pale and that as he drank his bottle, his upper lip turned completely white. It was explained that the baby was born with a heart defect called an atrial venal canal malformation which meant that his circulatory system was deformed, he could not get enough oxygen in and out of his lungs and he couldn’t breathe and eat at the same time.

So, it was off to see Dr. Q. Jan Quaegebeur, MD, director of pediatric cardiac surgery at Columbia University hospital, for open heart surgery to fix the defect at the age of two months. And it worked. Within minutes of being brought to his room for recovery Netanel started turning pink before our eyes as oxygen-rich blood suffused his entire body for the first time.

Socializing with Netanel as a toddler was easy. He was always willing to give a hug and his personality shone through. Some say that children with Down Syndrome came through life once before and didn’t complete their earthly assignment. I’m not sure what Netanel’s first assignment was but this time he’s here to impart joy among those with whom he comes into contact and to teach us that no matter what you’re thinking or if you’re feeling sorry for yourself, there are those coping with different abilities who struggle to get their point across.

And so, we come to Netanel’s high school graduation. Enrolled in special programs through NJ’s Sinai programs, Netanel has learned to read English and Hebrew. While he’s aged out at the local yeshiva in his community, he’s starting another program at a different yeshiva.

But he’s worried. He’s worried about being one of the oldest students at his new yeshiva and how he would make new friends. Not bad thinking for a “Mongoloid” is it? But we have no doubt that he’ll adjust because that’s what he does and I’m sure he’ll flourish there, too.

Netanel’s parents’ lives and those of his four siblings, all younger, have not been a cake walk. His parents don’t complain about the financial burden of providing a yeshiva education in a specialized atmosphere. And his brothers and sister annoy him as much as he annoys them as you would find in any family. They’ve all earned my admiration. And they have taught me, too.

We certainly don’t countenance the word “retarded” when it’s used, nor do we refer to Netanel being “disabled.” Nope, he’s “differently abled”; able to do things we mere mortals cannot such as performing repetitive tasks that could drive “normal people” to distraction. Think Charlie Chaplin in “Modern Times.”

So, here’s to Netanel on his graduation and starting a new phase in life. And here’s to those like him who brighten our lives, help us see beyond physical appearances and mental abilities and cause us to appreciate the important things in life.