“I’m so proud of you. You’ve kept him home longer than most.” “What?” I thought, after my mother said that to me when my Down syndrome son was 8 years old . . . “Where else would he be?”
I don’t know the world my mother lived in when she was raising children – – that was almost 70 years ago, but since she said that I’ve wondered what it must have been like for mothers of handicapped children then. I remember that my mother had a friend that went once a month to visit her daughter in a facility an hour and a half away. I never asked what the girl’s disability was. I have to presume that whatever it was, today’s protocol would be different.
Years before my son was born we had a neighbor who told us she had a 30 year old Down syndrome son living an hour’s distance away – whom she had never seen. She had been told of his diagnosis in the delivery room and counseled that it was best for the mother to not see or bond with the child before he would be sent to . . . I don’t even know what to call it . . . some place where he would live out his days. She had taken that advice, and time had passed. I wish I’d asked her more about what she was feeling at that point.
The world has gone through swings in schools of thought regarding persons with disabilities. I understand the way things are today so I am comfortable here. It’s all pretty personal so I suppose people all go through their own back and forth in forming their decisions and attitudes. Everyone makes choices that work for them – – and they can be pretty tough choices.
Sitting in a circle at a mommy and baby class when my son was 6 months old the ladies got talking about when and how they had been told that their child had Down syndrome. One by one interesting and heartfelt stories were told. Lastly, when it came to me I talked about the prenatal testing and results. All around the circle there were murmurs of surprise “Oh, you knew.” “Oh, you knew.” One by one as they said these things I felt more uncomfortable. “What are you saying?” I thought. “That if you had known ahead of time things would have been different?” I could hardly bear to think it – – “That you wouldn’t have had your child? You seem to like your baby pretty well now.”
There are some important dialogues to be had when Down syndrome is diagnosed before a baby is born like the one started by the very real question a genetic counselor asked of me a number of times: “Are you going to maintain the pregnancy?” As it happens many women answer “No” to that question and I felt that perhaps there were some in the circle who would have decided that way if given the chance.
Many things go through your mind when you receive that diagnosis. I wondered whether my son would have a face I would like to look at. It was a logical question to me as I had never seen a Down syndrome face I’d particularly liked to look at before. I remembered that when my older daughter was crawling around the house my husband had been led to say “What did we watch before her?” because the TV was a thing of the past. We would spend all our time at home just watching her explore and discover. I wanted to feel the same way about this son. I knew I’d be okay though when the nurses at the NICU (neonatal intensive care unit) asked us to wait outside on one visit to him a few days after he was born. They said they were putting in a new IV and had exhausted all the regular places on his body so they were going to put this one in his head. As the wait dragged on my heart gradually filled with distress until I started to cry. “If it’s taking this long,” I said to my husband, “it must be hurting him.” I knew then that the same lioness sensibility lived in me for him as prowled around the fringes of my other children’s lives to defend them from grief or pain. He is 18 years old now and I still get the same pleasure out of watching him crack a smile that any mother does with her infant baby.
I am glad I live in this day. I am glad I won’t have to look back when my son is 30 and wonder if I had done the right thing, if I had listened to the right people. I’m glad that the world didn’t force me to make that choice. Sometimes when I put him to bed, at age 2, or 10, or 15, I would imagine how those children lived in that day of my neighbor’s and my mother’s time. I would lie there next to him in the dark and picture him in a dormitory setting, in the dark, with no one there to just tell him he was a wonderful boy and that our world was a better place with him in it. Even if he was asleep and never heard. I am glad he lives in this day and can have this life.
For the women in the circle with me in class – – I am glad their children live in this day too, and that their parents love them and are caring for them in the way that only their own parents can.
For the parents of those children today who never do get to live – – I am sorry that they live in this day. I’m sorry that technology has burdened them with making that decision for their child. It’s too much I believe. To me it’s too big a decision to make with too little knowledge of the outcome. But it’s not for me to say how any person’s life would be impacted by the addition of a handicapped child. I don’t presume to know what any other person should do. We all can only make choices that we feel are best for our own families.
On a day when my other children were old enough to understand what “maintain the pregnancy” was all about we explained to them that such a choice had been put to us about their brother. My horrified 7-year old exclaimed “But we love him!” That we do, Steve, that we do, and I am glad that I get to live in this time when I can live with and laugh with my decision every day. He’s a trickster and a treasure, a 250 pound toddler, the creator of tears and trouble, but worth every bit of it because “we love him”.