I never, for an instant, thought of terminating the pregnancy, even when I found problems in the pregnancy indicated a chance of Down syndrome. I never had prenatal testing. But, what would I tell another mother to do if she found out her child had Down syndrome in prenatal testing? The answer is as loaded as the question, and it comes in two parts.
Ohio will soon become the second state to ban abortion if the reason is fetal diagnosis of Down syndrome. Should a certain type of child be picked out, eliminated due to our fears? Would a person end a pregnancy if the child had only one arm? Autism? Blindness? In a study from 2012, from the US National Library of Medicine National Institutes of Health, 60% to 90% of women chose abortion when the fetal diagnosis showed Down syndrome. In 2013, North Dakota signed into law a bill making it illegal to perform an abortion due to Down syndrome and genetic anomalies in fetuses. Other states are lining up to consider similar laws. Some states already ban abortions if gender selection is the motivation. The U.S. House of Representatives denied these ideas.
Imaging life without my son is unthinkable. Yet, there are moments (many moments), when I get tired, worn out, and angry. I can’t figure out what to do. He’s adorable and impossible, a ten-year-old toddler in constant action, growing up on his own timetable. At times, I dread just getting pajamas on. I want to leave him alone in a room and not worry he’s going to figure out how to open the door (even though it’s locked) and bolt into the street or forest. I want to find daycare so I can work a regular schedule. But I can’t. I want him to speak, (now !), so I can understand what he says. Instead, I talk like a poorly written children’s picture book.
Parents given the news their child has Down syndrome will face a lot, an awful lot. Most kids with Down syndrome need surgery, mine did. Most have trouble speaking, mind does. Then there are the glasses, hearing problems, walking issues, balance, strength, and behavior issues. These stresses press on every fabric of life. Marriages end, mine did.
The dreams and hopes and joy of having a child intertwine with our images of perfection, birthday parties, those first steps, excelling at school, friendships, graduation. We kind-of have it plotted out, how kids should look, turn out. My daughter followed the steps of growth like a champion baby and toddler. She walked early; talked non-stop.
When a wrench is thrown into the storyline of parenting, we can pull out bigger tools and try to control the outcome. “Getting rid” of a Down syndrome pregnancy does not guarantee a storybook ending. The reasons my son came to me I see like little bits of dust floating in the sunshine through the window. Through my son, I’ve worked on my tolerance, patience, anger, and learned so much about acceptance. My first child taught me all this, but my son, he’s a relentless teacher – a warrior on his own path chasing me to draw my sword when needed and bow in reverence to the higher meaning of life.
If I’d ducked out on this chance to have this child, something else would have had to tackle me, teach me. But my lesson is not the lesson for someone else. I may not tell someone else how to live. This philosophy just doesn’t work. Most likely the next parent welcoming a baby with Down syndrome into the world will face many of the challenges we did. But “normal” children will face these things too. I even feel with my second child, I get a break in some of the pressures of parenting typical kids. After a decade of parenting a child with special needs, I’ve turned the tables on how I see his “disabilities.” We no longer try to keep up and follow the stream, we take the backroads and side streets to our own destination. Life is not where we end up, but where our consciousness is when we create our journey.
Taking away a woman’s right to choose by denying her the ability to terminate pregnancies will not solve issues. Forcing someone to do something against his or her will is wrong. At stake here are two issues, not one: the right to own our bodies and the awareness that Down syndrome is child, first, perhaps the child you exactly need in your life.
Yes, I would tell a mother to have that child. Down syndrome does not make human beings less. Neither does wheelchairs or canes or race or sex. And no, I would not take away a woman’s right to choose. Perhaps with more education and sharing more stories, more parents will come to understand a child with Down syndrome is not a burden, even as tough as it is, but rather it truly is a blessing, if one chooses to receive it.