I was expecting my sixth child and my family, especially the children, were very excited. My oldest was 12 years old, the next one 11, then 9 and 7. My fifth child was almost 2 years old and the older kids were eager for their toddler brother to have a new companion with whom to share and play.
My pregnancy went smoothly, with just the normal amount of discomfort. Less than two weeks before my due date, I felt contractions that told me I had to go to the hospital. A few hours later my baby was delivered under very difficult circumstances. The doctors and nurses were very concerned about him and whisked him away to check him out thoroughly. When they finally brought him to us my husband noticed that there was something different about his eyes, and about the baby generally. I felt so weak at the time, I wasn't even sure of my husband's suspicions. He did ask the doctors if our baby was okay, and they said that he was just very weak from the strained delivery.
We called our families and friends to let them know the good news of the birth. Though exhausted, I didn't sleep well that night because I wasn't confident that our baby was all right. Meanwhile, he was kept in the Neonatal Intensive Care Unit.
The next morning at 7:30 am the pediatrician came to see me. Since I had a roommate in the next bed, he told me to come out of the room. Without a smile he said, “Your baby has Down syndrome and he may have other problems.” I felt speechless after hearing him continue saying, “Don't worry, you have 5 healthy children and this baby is the only one with problems.” He saw on my face that I was not happy to hear this and he asked for my mother's telephone number, which I gave him. I walked back into the room, and I saw my roommate looking at me. She had just had her first baby, and I didn't want to upset her, so I forced a smile. I had to go into the bathroom because I felt I was breaking down and I didn't want anyone to see me in my state of despair.
I waited a little longer to call my husband until after my children went off to day camp. I was surprised when he told me that the doctor had already called my mother to tell her the news. I had not yet gotten a chance to deal with my own feelings, yet by now my entire family knew our news.
This story may be common to many parents, but one thing that is different with us is that my husband and I are both deaf since birth. We were always prepared for anything that may happen unexpectedly and to accept it. But it never occurred to me that we might have a child with Down syndrome in our family. We are the youngest in both our families and we are the only people with hearing impairments in both families. I told my husband that just like our parents had given loads of love and attention to us, we should and would, want to do the same for our new baby.
Four years ago I had to go to the New York League for the Hard of Hearing for a hearing test for myself. That place is where many ‘frum' parents bring their children with hearing impairments for testing, hearing aids, speeches, etc. As I was waiting in the lobby for my turn, a young frum mother saw me and came over to say hello. She introduced herself and said, “Hi! My problem is my daughter; so who is your problem?” I smiled and said, “Well, the problem is myself.” I told her (at that time I had 4 children) that I B'H had 4 hearing children. She was embarrassed by her question and comment.
Now we have our son with Down syndrome and the doctor is telling us that he might have other problems. I look back to that episode of a mother with a “problem”. I have to say that Down syndrome children are not a “problem” at all, but sometimes we are the problem because we are not able to deal with what we think is a problem. We are all human beings made by Hashem, no matter how different we each are. And even those of us who are not labeled as “problems” also have our very own special needs.
This article first appeared in issue #5 of Down Syndrome Amongst Us