What a Geneticist Didn’t Include in a List About My Child With Down Syndrome


Dear Geneticist,

Although almost six years have passed, I still remember our conversation as if it were yesterday. I remember you sitting us down, doing a diagram of our family trees and explaining to us the laundry list of characteristics and conditions closely associated with an extra 21st chromosome: low muscle tone, a sandal gap in the toes, leukemia, heart defects, gastrointestinal defects, reflux, hyperthyroidism, cognitive delay, obstructive sleep apnea, weakened immune system, frequent colds and upper respiratory infections (including pneumonia) and Alzheimer’s disease. It was an exhausting and disheartening list to listen to.

Five years later, I still get upset when I think about your list, which was full of negativity, fearfulness and blight. To be perfectly honest, it was one of the worst conversations of my life.

I’ve come a long way since then. From being scared of the future and intimidated by the seemingly endless list of complications to being a confident mother, teacher and advocate who approaches meetings and appointments from a place of strength. From being in the shadow of the list to being in the light of our experience.

There’s something you need to know about the medical conditions you listed: It didn’t tell me anything helpful or specific about my child.

Johanna Hirons.2

My child is her own unique individual whose life experience will be heavily influenced by our genes and our life. It will be influenced by my emphasis on early learning and reading. It will be influenced by growing up as the older sister of identical twins. It will be influenced by growing up with experiences like hiking in the Rocky Mountains, watching the geese fly south and visiting her aunt on the East Coast. It will be influenced by love, laughter, hope and the acceptance my daughter, Phoenix, will determine her own path in life — a path that’s different than we originally envisioned but a valuable life path nonetheless.

These are influences you never mentioned. These are the influences that shape a life, not just the presence of an extra chromosome.

There are some valuable pieces of information you missed when you told us about some of the possibilities for our child. You missed telling us Phoenix would bring my extended family closer together and that she would be the darling of the family and the favorite grandchild. (Sorry to the rest of the grandkids; please don’t hold it against her.) You didn’t tell us Phoenix would be reading by 5, that she would rock kindergarten and be into “Frozen,” Tinkerbell and Princess Sofia.

You didn’t mention Phoenix would happen to be in a subset of kids who are extraordinarily healthy with a great immune system — and not just compared to other kids with Down syndrome. She’s healthy even when you compare her to typical kids her age, and she never misses school.

My point is that children, and the potentiality of their life, can’t be quantified by an extensive list of things that could go wrong.

A life is more than a list of attributes, a list of complications, a list of negative possibilities, which may or may not directly affect health and happiness. A life is more than that. Phoenix is more that that. We all are. And when we try to reduce the quality of a life down to a list of complications, we’re doing something wrong.

Here’s what I’d like to hear. I’d like to hear people with Down syndrome are chasing their dreams. Children are being included in regular classrooms. Teenagers are getting jobs and learning independent living skills. Young adults are attending college programs designed to integrate young people with cognitive disabilities into college life. Adults are living independently, many with support, many in group home-type situations and many with supportive roommates.

Tell parents about Jamie Brewer, an actress in “American Horror Story.” Tell them about Lauren Potter who starred in “Glee.” Tell them about Karen Gaffney who swam the English Channel with a swim relay team. Tell them about the dozens of young entrepreneurs who are selling their art and writing books and telling their stories. Please just tell parents something good about their precious baby who has just come into this world.

Follow this journey on Celebrating Phoenix.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

To the Doctors Who May Not Remember How You Talked About This Baby

Dear NICU doctors, You probably don’t remember me. The last time you saw me, I was hooked up to a ventilator, had a trach and was fed through a gastrostomy tube. I was a mere 5 pounds when I was transferred to the rehab hospital, and I was only allowed to wear clothes for just a few [...]

To the Person Who Thanked Me for Showing My Scars

When you smiled at me and told me you thought my broken body was beautiful, I was afraid. Most people who bring up my scars aren’t entirely sober. I understand that. When they point them out or say “thank you,” it typically means they’re outing themselves as self-harm survivors. There’s an understanding that flickers between [...]

2 Words Reassure Me When I Worry About the Future of My Child With Autism

When we first heard the A-word (autism), thousands of questions went running through my mind like a runaway freight train. One question chasing the next and the next and the next, until they all sort of crashed at the end of the tracks in a heap of a mess that was my terrified brain. All [...]

Girl Writes Heartbreaking Letter to Santa Asking Him to Cure Mom’s Crohn’s

There’s one thing this girl would rather have than toys this holiday season: her mother’s health. Bobbie-Mae Chalk, 11, from Southampton, England, recently got an early start on writing to Santa. She penned a letter asking if he could please make it so her mother, who has Crohn’s disease, doesn’t feel ill all the time. The letter [...]