Makeover of the Soul
By Misty Coy Snyder
@mistycoysnyder
@Happinessisdownsyndrome
It was a brisk day in October. I had recently given birth to my second son and was seven months into pandemic life. The condition of my hair had become impossible to ignore and, after a year, I finally decided to buckle down and get my hair professionally done. Due to health restrictions upheld by the salon, I was guided to an outdoor tent in the middle of the parking lot. I plopped myself into a big, black, leather chair next to two other people getting their hair done, carefully spaced six feet apart. After a few minutes, a woman emerged from the front door of the salon in sleek heels, a pencil skirt and an oversized sweater. After a quick glance in the mirror sitting in front of me, I quickly covered my sweats and old sneakers and, for once, was grateful for the mask which covered my untouched and exhausted face.
It had been a long time since I’d interacted with someone outside my home but it felt like riding a bike. The ease of our conversation was a relief. We laughed and shared stories while I watched her cover my head in foil. When the subject of my children came up, I told her that I’d just given birth to my son who happened to have Down syndrome. As though I’d mentioned a death in the family, she gasped and said, “Oh no! I’m so sorry.”
I’d heard these words during my pregnancy and they stung, but this was a whole new kind of pain. I paused, regrouped and said, “No, you don’t have to be sorry. He’s wonderful.” The woman awkwardly shifted in her high heels and muttered something about needing to mix more color for my hair as she hurried away.
The rest of the appointment was awkward with some forced conversation. Most of the silence was because my mind was running a million miles a minute. I regretted sharing such personal news with her. Then I shamed myself for regretting. Then I got angry with her, immediately followed by sadness and worry.
I wondered if my whole life would be filled with interchanges like this one with strangers and friends, alike. I pictured quick glances filled with pity and well-meaning comments that cut like a knife. It was a deep rabbit hole I was falling into and I realized, if I didn’t pull myself out, I would be stuck and unable to move forward.
The woman finished cutting and coloring my hair and, for a moment, I forgot all about what happened. I was overjoyed by the end result and felt like a new woman. I've always adored that feeling. I thanked her profusely, dusted the residual hair off my clothes and went to pay with a skip in my step and extra bounce in my locks. As I handed the stylist her tip, she looked at me with knowing and compassionate eyes. She didn't say a word but her expression showed an understanding that she had unintentionally hurt me. I smiled sincerely, thanked her and drove home to show off my hair to my newborn babe (who, by the way, didn't seem to notice the difference).
I never returned to that stylist or the salon. Not because I held a grudge or thought I could find a better place to have my hair done. I just couldn't bring myself to enter the place that triggered such raw emotion. As I took off the robe that day and stepped out of the salon chair, it was as if I shed my old skin and grew newer, thicker skin. The skin was not impenetrable, but more indestructible than it had been before.
In the year and a half following this encounter, there have been many glances, questions and comments involving my son that have stung. But none of them have ever pierced my heart quite like that first experience at the salon. That incident felt like preparation for battle.
A few weeks ago, I visited a different salon. I frequented this location before my high risk pregnancy and loved one of the stylists there. She was unaware that I had gotten pregnant for a second time and a few beads of sweat formed on my brow when she asked about my life during the pandemic. This time, however, I quickly wiped my forehead, smiled from ear to ear and boldly proclaimed the sentence I'd practiced over and over again.
"Well, I got pregnant and had another baby boy! He is wonderful and precious and he happens to have Down syndrome."
I braced for impact but she instantly congratulated me and adopted the same smile I wore on my face. She gleamed as I showed pictures of him and launched into a description of another client of hers who has a child with a disability. This other mom sounded strong, fierce and admirable. I told her I aspire to embody those qualities as I walk down this path.
"You already are like her," she said. “The love you have for your son is undeniable and your joy is contagious."
I looked myself square in the mirror and saw the transformation she described. She was right. I was stronger. I did have joy. I wasn't trying to convince myself and others that my child had a wonderful life, worth living because I had nothing to prove. Nothing to hide.
As I have walked this path, day by day with countless therapies, giggles, doctor's appointments, adventures, follow-ups, snuggles, setbacks, triumphs and emergency visits, I have grown a new kind of skin. It isn't as thick as the day I walked out of that first salon. It’s more malleable, adaptable, transforming-before-my-eyes skin. I am tougher. But I'm also more tender, more aware, more broken-hearted.
My eyes are more open now to the injustice, ableism, and our society's obsession with accomplishment. I love to watch my son, Jed, grow, change and learn just like my first son but his skills (or lack thereof) don't consume me. I'm not agonizing over things the way I did before because I'm grateful my son is here, living and breathing. Sixty percent of children prenatally diagnosed with Down syndrome don't ever experience life, yet my boy is here, brightening my days.
I've thought often about revisiting that first salon with Jedidiah in tow. I would hug the stylist who did my hair that day and thank her for prompting my transformation. Sitting in that parking lot was the start of an epic road. What a gift it’s been to witness my son’s growth and feel the change in my own heart. What a pleasure to experience such a unique perspective.
I'm grateful, because I am not the same person I was. My entire soul was made over after sitting in that chair. I am Misty 2.0. I am flawed and sometimes faltering, but tough as nails and soft as a pillow. Every salon experience since has had a lot to live up to.
Guest essay written by Misty Coy Snyder. Misty is a writer, teacher, advocate and performer. She has traveled the globe singing and acting and spent a great deal of her career in New York City, earning her Actor's Equity card. Recently her life looks a little different as she parents two young boys, one with Down syndrome. She created the advocacy platform, Happiness is Down Syndrome, on Instagram and Facebook and enjoys connecting with other mothers along the way. She hopes that no parent given a prenatal diagnosis will feel alone like she did, and she works for inclusion and change in the Down syndrome community.