December 10, 2019

Our family’s journey to make sure our special son was included

As soon as they put him on my belly, I knew. I looked at his eyes, and they were a bit puffy, as is normal after a regular delivery, but I knew.

My husband, Mark, said he looked perfect, with all fingers and toes accounted for. I kept asking if he was all right; he was our second child, after all, and I knew he wasn’t, because a mother knows.

Mark kept believing everything was OK until he followed the nurses down to the nursery, and they asked for pediatricians to come in. Nurses attended to our first born, Jason — not doctors.

The pediatricians started looking closely at some of Michael’s features, and phrases like “genetic testing” started to fly. Mark said his heart stopped in his throat then. But the doctors still weren’t saying what exactly it was they were wondering about. They suspected something but did not want to say what. This is, after all, litigious Los Angeles.

It was 2 a.m. on Oct. 5, 1996, and all they wanted to say was, “We’ll see after the genetic tests come back.”

When would that be, we asked.

About two weeks, they said.

Then I got angry. Just what is it you suspect? You have a strong feeling it’s something, don’t you. It was not a question.

Yes, they did, they said. They had already contacted our pediatrician to order tests.

We finally got them to admit that they strongly suspected Down syndrome.

Those first 24 hours were devastating. We were overwhelmed and felt so terribly alone. By 3 a.m., it was finally just Mark and me together in a hospital room, crying, unable to stop, unable to comprehend.

What had happened to us? To this baby? To our world? We grieved for the baby we had hoped to have and feared for the future of the one who had arrived. We didn’t know any better, and there was no one to talk to, no one at that point who wanted to talk to us about it.

Within the first 12 hours, our pediatrician had assembled two medical geneticists, a pediatric cardiologist and a neonatal nurse to confirm the initial suspicion, without the keratype results.

It pays to be living in a big city. Experts checked our baby from head to toe, and we found ourselves to be extremely lucky. Michael was a very healthy boy, with none of the heart or other gastrointestinal problems common in many children born with Down syndrome.

I wanted nothing more than to get home as quickly as possible. I needed my things, my bed, my 4-year-old son, Jason, my parents; I needed my normal life to surround me. We left the hospital less than 36 hours after Michael was born.

The bris: I wasn’t ready for it, and yet, I think now that it saved me in that first week. It gave me a million details to focus on and allowed me to go out and pretend that my world had not fallen apart. What to serve, how to decorate, cleaning the house, who to call. A million tiny details that kept me sane.

And Mark, darling Mark, telling everyone that what we wanted most was the support to beat the odds. Tell us what the odds are, he said; Michael’s going to beat them. Everyone cried.

That same week, our rabbi at Temple Israel of Hollywood, John Rosove, came to visit us with the head of the nursery school. They wanted us to know that they were already waiting for Michael with open arms, waiting to welcome him into the community, into the schools, that we as a family would always be a part of the temple community, including Michael.

It was our first feeling of acceptance, of still being a part of something. It would come to mean so much more.

Then everyone went away. We are by nature doers. We started accumulating information: organizations, Web sites, contacts, the material from a family member who had just found out her son was autistic. Books, articles, more contacts, support group information. Within weeks we were getting all the services we needed for Michael because he was in very good health and as he grew seemed to be exhibiting age-appropriate behavior.

At the same time, I just wanted to be left alone, to love my baby. I knew everything I needed to know about DS right then, and the anguish I experienced talking to or meeting anyone with a child with DS far exceeded the benefit I might reap.

Their children were not Michael. Their experiences were not mine. Their encouragement only made me feel that I needed to be encouraged, while I did not feel discouraged in my own day-to-day existence with Michael.

One woman said, “Put this information in a drawer and leave it there. Somewhere [along the way] … , you may find yourself wanting something from that drawer. That is when you should approach it again.”

Some important help for us came from a different part of the Jewish community: Jewish geography led us to an Orthodox woman who has a daughter with Down syndrome. Holly Magady, whose daughter, Danielle, is now 17, brought us a foot-high stack of research and notes and contact information. She led us to an inclusion program at UCLA for young children with varying disabilities and introduced us to a strong philosophy of full inclusion in the community and in education that guided us through the next few years.

Meetings with developmental pediatricians and regular pediatricians and therapists of every specialty turned into a schedule full of appointments. Thank goodness for our home videos: they show us rhyming and signing and climbing and encouraging and rolling and sitting in front of mirrors and computers, and always, always talking or singing to Michael. I can’t remember a quiet minute in all that time, in the hope that he would copy us, answer us, some how respond to us.

And he did! He did!