The Questions Asked About My Daughter Because My Son Has Down Syndrome
Soon after our daughter was born, I had several encounters with medical staffers who asked me whether she is “OK” or “normal,” since her brother has Down syndrome. Here’s what I want you to know: Normal doesn’t exist. The word itself is like scraping fingernails down a chalkboard to me.
The fact that our daughter has 46 chromosomes and her brother has 47 doesn’t define her as “normal.” While my son’s extra chromosome means he has been given a diagnosis of Down syndrome, it doesn’t define him as “abnormal.” That extra chromosome means he has an intellectual disability and some medical issues. He has challenges that differ from his sister, but he is “OK,” too.
Similar questions reared their curious heads during my pregnancy with our daughter. Questions like, “Do you know if this baby has any dramas?” and “Have you had the test to make sure this one doesn’t have Down syndrome, too?” Now let’s be clear, I welcome questions with an open mind and heart, and I see it as an opportunity to educate, but these questions hurt — deeply.
It was like having a “normal” baby after having one with Down syndrome was a consolation prize. A “perfect baby” after an “imperfect baby.” The truth is, we welcomed each of our babies into the world with unconditional love and acceptance. The most important part was that they arrived safely and into our arms. The rest could be navigated later.
I understand people’s sentiment and reasoning for having asked me these questions. In their eyes, they saw us having a child with a disability as a sadness, a struggle and a burden. I want you to know our son is not a burden nor has he brought sadness.
The struggle part? Sure, we struggle with our son’s medical issues that are associated with Down syndrome. He gets sick a lot and misses preschool, which he loves, due to a weaker immune system. We struggled with his open-heart surgery at 4 weeks old, and we struggle with his mobility issues and nonverbal communication.
But we also struggle with our typically developing daughter. Let’s be real: Parenting is a struggle. We’re all winging it! We just have different challenges with each little person.
Here’s the thing, folks: Each and everyone of us has different abilities, strengths and unique quirks. It’s what makes us interesting, different and beautiful. Some of us need more help in this life and that’s OK.
So in hindsight, how would I now respond to those medical staffers who asked if my daughter OK? Yes, she’s OK, but not because she has one less chromosome than her brother. It’s because she is blooming as part of a special needs family. She is loved and is encouraged to be herself and to value kindness and empathy. She’s happy that her brother is exactly who he is. She helps put his hip brace on or reminds him not to pull out his hearing aids. So long as her brother is included in the game she is playing, she is OK.
She’s OK and her brother having Down syndrome is OK, too.
Follow this journey on About Ash.
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