My son Yanky is thirteen years old. He’s the youngest of ten, and he’s our second ben yachid — I have one mainstream son, and one with Down syndrome.
I didn’t know Yanky’s diagnosis before he was born. I was still in recovery and my husband had gone home, and we had no idea anything was wrong (or right!) with the baby.
My mother was sitting with me when a doctor came by. He asked me who she was. When I said it was my mother, he asked, “Can I talk about the baby in front of her?”
“Absolutely,” I told him, bewildered — why on earth not? It didn’t enter my mind that anything might be wrong.
That’s when the doctor dropped the bombshell: “We sent off some blood work to the lab because we think the baby has Down syndrome.”
I was shocked.
My instinctive reaction, though, was to turn to my mother and say, “Okay, I guess we’re going to Holland.”
This comment was based on an article I’d read as a teen, in which Emily Perl Kingsley compares the experience of having a special needs child to landing in Holland after having prepared for a vacation in Italy [see sidebar].
Looking back, I think my reaction was a matnas chinam. The fact that that article jumped to mind instead of shock, fear, anger, guilt — all very normal and understandable reactions to such news — was a gift.
I think my mother was probably more shocked than I was, though of course she didn’t show that to me.
I never looked at our son’s diagnosis as a tragedy. A friend came to visit me when the baby was a few days old, and asked me, “Are you keeping him?”
I didn’t even know it was an option not to keep a child!
“Of course I am!” I replied. “Maybe you want to take one of my older kids, though?” It was a joke, of course, but my point was made — this is my child, just like the others, and we’re going to love and care for him.
And that’s been our approach all along.
I didn’t know it at the time, but I was really lucky with Yanky; he has no medical issues — not with his heart, not with digestion — although many children with Down syndrome are born with medical challenges.
He was in the NICU for a short while after the birth, but not for any major issues;other parents of a Down syndrome baby may run to doctors daily, or need to arrange complex cardiac surgeries for their newborns. Yanky’s health is a huge matanah.
And so is the fact that he’s very, very cute!
Of course, we have ups and downs. Once Yanky got lost, and almost reached the highway before he was found and brought home. That was a major scare.
Another day he wanted to make a Lag B’omer fire and he lit a fire in the kitchen — it was a neis that nobody was hurt and nothing was destroyed!
By now, baruch Hashem, things are more stable.
When I look back at the journey we’ve been on, I want to tell other parents who have a baby with special needs that
Now I realize I should have just let myself be a kimpeturin and let Yanky be a baby!
There was plenty of time to start therapy once he was a few weeks old.
Parents who have children born with special needs now are lucky. There are so many services and organizations. There are many therapies available in the frum world and yeshivahs like Banim L’Makom. There’s the Hamaspik School so children don’t have to attend public schools.
Thirty years ago, there was nothing like this — we’re fortunate to live in this day and age. And with this help and support we can focus on enjoying bringing up our children with special needs.
Last December, we made Yanky a bar mitzvah. We created a beautiful, special event — because he needed it, and because we have nothing to hide! We wanted to show how proud and happy we are that he is our son, and that if this is how the Eibershter created him, this is ideal. We went all out — nice hall, music, centerpieces, you name it.
Yanky had been talking about his bar mitzvah ever since his brother’s bar mitzvah six years ago. He wanted to say a pshetel and put on tefillin and get picked up on a chair, just like Shragi. In fact, that was the highlight of the affair for him — being lifted on a chair. It’s the first picture he turns to every time we look at the bar mitzvah album!
In addition, Yanky chose a song to sing alone at the bar mitzvah seudah. He sang “Achas Sho’alti” with confidence, passion, and joy. It was a beautiful moment.
So many people attended that bar mitzvah. Some just came in to wish us mazel tov, but the atmosphere was so spirited and wonderful that they stayed until the end! Yanky really did us proud — shaking hands, thanking everyone for the presents they gave. He was a star.
I never liked it when people speak about children with special needs having heilige neshamos — every Yid has a heilige neshamah. But maybe because children with special needs are purer, less filled with distraction and frivolity, the heiligkeit comes through more clearly.
For example, ever since Yanky was a little kid, as soon as Yom Tov was over he’d run to the calendar to check when the next would be. We should all live with that cheishek!
And the same thing happened when he began putting on tefillin. Every bochur should be as excited as Yanky was to begin wearing tefillin — and the enthusiasm continued.
After Succos, when he hadn’t put on tefillin for an entire week, Yanky woke up and rushed downstairs. He was still in pajamas, eyes half-closed, but he was shouting with joy, “Today I can put on tefillin again!”
Thirteen years ago, my family was welcomed to Holland. And my message from here is: Holland may come with challenges, but at the same time, it is truly beautiful.
