Seven years ago, my partner and I were told that our son, three months in utero, had a 90 percent chance of being born with Down syndrome. My world collapsed. In a one sentence diagnosis, a child I thought had unlimited possibilities now seemed to be nothing but sets of limits – bullet points of developmental delays and medical issues I took from the internet.
There is no escaping those bullet points. If you are dealing with a potential Down syndrome diagnosis, or have a child with Down syndrome already, understanding the diagnosis is a necessity for many reasons. But as you read and absorb the information, the most important thing you can do for your family is to not let those bullet points destroy the hopes and dreams you have for your child. Do not let them frame your mental picture of who your child will become. Do not lose your sense of wonder at this new little life.
The reality is I could write a list of limiting bullet points for a child born without a diagnosis. That child could well have allergies; might be horrible at math; almost assuredly will act out during puberty; will create stress in your marriage or other relationships.
All children come with challenges. However, in the absence of a diagnosis, parents don’t start their child rearing journey with lists of potential problems. They start optimistically and, perhaps, naively. They take on challenges as they come up. But us special needs parents? We start with a collection of worst case scenarios and must build hope in the shadow of that information.
Before the diagnosis, my partner and I dreamed our son would be a veterinarian or an archaeologist. A veterinarian because we are animal lovers; an archaeologist because she and I had both opted for “sensible” college degrees instead of following our dreams to do something less practical, like dig through ruins in Egypt.
My son’s diagnosis obliterated those dreams for me. The image of my son the veterinarian was replaced with the picture of him bagging groceries. The loss was devastating, in the beginning.
But over time, the disappointment faded. First of all, that sort of talk is fanciful to begin with. With or without a diagnosis, our son’s future would be based on his own passions and strengths. So I reframed the dream. In wishing for a veterinarian, I really just wanted a son who shared his family’s love of animals. In hoping for an archaeologist, I wanted a son who followed his dreams instead of too quickly putting them aside for more practical goals.
As it turns out, my son has a gift for interacting with all sorts of animals. He approaches carefully and quietly sits next to them, finding their eyes and communing with them until they are relaxed. We call him our Animal Whisperer. Dream realized.
Like any 6-year-old, my son has his passions – ball games, his dog, trains, and music. As he grows older, his interests will evolve and his skill set will grow. His range of ability will be limited to some extent by his Down syndrome, but we won’t impose a ceiling based on Internet bullet points. Like all of us, he will discover his talents through trial and failure.
My role as his mother is to give him a strong education and work ethic so he can contribute to society with work he cares about. The job he ends up doing will be different than it might have been without the presence of Down syndrome, but both his and my level of fulfillment can be the same.
The best part of it all is I don’t know what my son’s future holds. It is his to create. Over the years, my increasing awareness of this fact has reignited that sense of wonder I lost when I first heard the words Down syndrome.
We have moved out of the box imposed by those internet lists of delays and problems. He is a happy little kid engaged in exploring the world. I am a mother who has learned to get past my superficial ideas of what success and happiness look like. Together, we live an uncertain life filled with fulfillment and hope.
Always hold on to that hope.
Anne Penniston Grunsted is a writer who focuses mostly on parenting and disability. She lives in Chicago with her wife and son and tweets @AnneGrunsted
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