Blog, Downs Syndrome, Inclusivity, Lifestyle, People

Down Syndrome Awareness Month: A Mother’s Perspective Pt: I

When You’re Drenched in Tears
By Chaya Ben-Baruch

When our pediatric cardiologist met with us for the first time in February 1992, at Legacy Emanuel Medical Center in Portland, OR, the lollipop in his mouth seemed to be a good sign. His team performed an ultrasound on our newborn child’s heart, as I acrobatically nursed him in order to keep him calm. But then, the verdict we had feared: open-heart surgery.

Holding Avichai in my arms on that fateful day three decades ago I recall the doctors’ decision to schedule open-heart surgery — a not-uncommon procedure for Downs toddlers. I wept, my tears falling on my baby.

While medical technology has improved exponentially since then, at the time, the local hospital in Fairbanks could not perform the complex procedure, which required me to travel alone with Avichai – but without family or support, to Portland Oregon, where the operation would be performed.

When our pediatric cardiologist met with us for the first time, the lollipop in his mouth seemed to be a good omen. While his team performed an ultrasound on our newborn child’s heart, I somewhat acrobatically nursed him to keep him calm.

When I asked the doctors to play some recorded music during surgery, they replied that there was no stereo system in the operating room, so I proudly whipped out a walkman and earphones. I asked the anesthesiologist to talk to Avichai before the surgery so he would recognize his voice.

I’d been told that surgery done with biologically similar blood had a better recovery rate, so I asked to have blood I had already donated and which was awaiting the procedure in Fairbanks to be ferried to Portland.

In the middle of the night, I asked our “lollipop doc” about “What happens if…, and if you can use a Down Syndrome child’s body part to help others. And I drenched my baby in my tears…

Waiting to be called for surgery, I saw other parents anxiously waiting, whose children were also in line for surgical procedures that morning. The tension was palpable among all of the parents.  I saw kids who “merely” needed tubes in their ears and wished I was in their parents’ place. When I kissed my son one last time before I handed his under seven-pound body over to the nurses, he smiled; I did not know if I would ever see him smile again. And, yet again, I drenched myself in my tears…

Miraculously we made it through surgery. The doctors, indeed, played music during surgery, and – since it was February 1992 and the winter Olympics were taking place in France – they shared with him who was winning the bronze, silver and gold medals in downhill skiing and figure skating. Five days later we went back home.

We’ve had lots of adventures since then; I can spot a doctor and peg his specialty with  95% accuracy, and have cried oceans of tears, some for joy, many out of grief.

Today Avichai lives in his own home with Keren, his wife of nine years, who also experiences Downs Syndrome. They are under the supervision of a group home and an off-site support “mom.” Aside from his regular work in a factory twice a month, Avichai is an assistant to Mayor, Shuki Ohana, of Tzfat, in Israel’s northern Galilee, where I and my husband, Yisroel, have resided for three decades.

If someone had told me then that my son with Downs would get through open-heart surgery, work alone and unaided, be fluent in two languages, live an hour away from me in his own apartment, together with his wife, and assist our Mayor – well, that was not written in any book on Down Syndrome.

I am so grateful for all the people along the way who directly or indirectly supported our son and our family. Winnie the Pooh was correct: “You are braver than you believe, stronger than you seem, and smarter than you think.”

Neshikha is reminding everyone that October is Down Syndrome Awareness Month. Neshikha supports and promotes inclusivity for special-needs people, awareness of the benefits of bees and other pollinators, and responsible environmental activism and protection.

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