When you become a parent, you receive lots of unsolicited advice. When you become a parent of a child with a disability you get that advice plus a whole host of commentary you must buttress yourself against.
This can range from well meaning to awkward to shocking or a combination of all three. As a writer and professional communicator, words are my currency. I place tremendous value on them, lovingly polishing each one like the keeper of the jewels in a fairy tale. Sometimes I cling to them like Golum - “the precious, the preeecccccioussssss!” - and forget that words don’t have the same level of value to others. Take my husband, for example. Words aren’t his thing. He helps balance me out and reminds me that not everyone is as adept at communicating as I am. He also helps me remember that the majority of people do not mean harm or ill will, and to give them the benefit of the doubt. My best friend also has a saying I keep with me: assume good intention and most respectful interpretation.
All that said, here’s the following tale, which I still turn over in my head.
Early Fall 2019
After my son was discharged from the NICU in August 2019, we had a series of follow-up appointments with the High Risk Clinic. This is a routine procedure for NICU babies. I called it the High Stress Clinic. Getting there involved driving into the busy hospital district, sweating to find a spot in a crowded underground parking deck, and maneuvering a tiny infant in a bustling hospital full of germs. Once you made it to the clinic, a host of terrifying medical terms like “failure to thrive” delivered by doctors with little bedside manner lurked in the treatment rooms. (Nothing guts you like seeing “failure to thrive” on a report after you’ve been doing everything you know how.)
So there we were, in the waiting area of the High Stress Clinic, side-eyeing every person who coughed in our direction (and this was B.C. - before COVID). Someone called our name and we were escorted back into our room.
A nurse, probably in her 60s, started asking us questions for intake. She was friendly, with short sandy hair and glasses. After going through the routine questions, she smiled and said, “I have a big family. My younger sister had Downs. She had something wrong with her heart, and nobody bothered to fix it because they didn’t do things like that back then. She couldn’t make it up a flight of stairs without getting winded, turning purple, and needing to take a break. She listened to the Wizard of Oz on repeat. We called her Fat Butt.”
I instinctively curled my arms around my son and hunkered him into my chest. I didn’t say anything, just smiled with wide eyes and nodded. I was shocked, mortified, and I wanted to do everything I could to protect my son. To shield him from a world where this was a story we were being told. I don’t remember anything else she said. I do remember she was very kind to us the entire time, but I was pretty numb and puzzled for the rest of the visit.
I couldn’t - and still quite can’t - wrap my head around why the nurse chose to tell me that, a new mom during a stressful time in a stressful place. I was more gracious about the use of the word “Downs” even though it annoyed me. The technical terminology is Down syndrome (capital D, lower case s), named after the British physician John Langdon Haydon Down, who classified the genetic condition in 1862. Could your name have been anything other than Down? How about Coole? Or Smith spelled in the fancy way - Smythe? Or one of your other two out of three surnames? Our society doesn’t always have the best interpretation of the word down. In a world where I already fight to prove my son’s worth, I wonder if it would make a difference if the name was different. Or is that me and my hang-up with the precious words? Humans like to shorten things and make them possessive, hence people incorrectly say “Downs”, which I think would probably happen if it was Coole syndrome too. Cooles, Cooles.
I processed the use of the word “Downs,” but what about the rest of the story? Was it meant to be reassuring? Uplifting? Why was “Fat Butt” an appropriate nickname? As a parent, how could you allow your kids to call one of their siblings that name? Would I have reacted differently if my son was older and we weren’t in the High Stress Clinic? Was she pointing out how far we’ve come as a society that my son was being treated and has access to early intervention unlike her sister? Why does part of me want to laugh the way you do when something is absurd?
What I know is this story was delivered with kindness and a fondness that I interpret as love. I also know that I only heard part of the story condensed into two minutes delivered by someone I’d never see again. Do I wish it would have been relayed to me under those circumstances? No, but it helped me strengthen my “good intention, most respectful interpretation” muscles. (This mom bod’s going to get swole from the workout those are going to get.) What do I really wish I knew from this story? Her sister’s real name.
Photo by Lucy Claire on Unsplash
Great post. I hope lots of Mothers are reading this and relating!!