Why I'm Envious of My Daughter With Down Syndrome

Last summer, at the pool, I panicked when I completely lost track of Jo Jo, my 10-year-old daughter.

The last time I’d seen her, she’d been sitting on one of the lounge chairs. Her two younger brothers were complaining that they were hungry, so I’d left Jo Jo to her own devices while I ran to the snack bar to get everyone lunch.

It had been less than five minutes, but she had mysteriously vanished. Her sneakers and pink socks were still there, so she couldn’t have gone far, but I raced around the pool decks, searching for her frantically until I bumped straight into the head lifeguard.

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“Have you seen my daughter?” I gasped breathlessly.

She pointed to the pool, and there, in the shallow end, was Jo Jo, sauntering around in her pink Betsy Johnson bikini in the midst of a game of water volleyball. She didn’t really seem to be on anyone’s side but was smack in the center, leaping up gracefully every few minutes to bat the ball over to one of the boys, who looked to be around her same age. Every time she hit the ball, she’d give a little cheer and clap her hands, yelling, “Hooray!” and high-fiving those in her immediate vicinity.

As she pranced through the water, twirling around in pirouettes like she’d been taught in ballet, everyone around her watched, entranced. “What a beautiful ballerina you are!” one grandma beamed as Jo Jo glided past her. People were oohing and aahing over her, and I could understand why---with her large pink bow, her mass of golden hair that glistened in the sunlight, and her doll-like features, she was a spectacular sight. No one seemed to care that she wasn’t following the game, that she was doing things in her own Jo Jo way, playing by her own set of rules.

As I stared at my daughter, I felt a mixture of pride, mingled with, to my surprise, envy. When I was 10, I would never have jumped into the pool and joined into a game with a bunch of boys I didn’t know. I was self-conscious and shy, a scrawny, coke-bottle glasses wearing little girl who was frequently bullied by classmates. If my mom had left me by the side of the pool, I would have curled up on the lawn chair with a book and not budged until she’d returned.

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But what made this scene even more incredible was the fact that if someone had told me 10 years ago, in those first few days after Jo Jo had been born, that that my daughter would be sauntering around a pool like a small Southern belle, I wouldn’t have believed them. Jo Jo has Down syndrome, a chromosomal condition that causes developmental delays and intellectual disability.

When Jo Jo was born, her doctors were kind, but they rattled off a litany of doom and gloom statistics. She needed surgery for an intestinal blockage, and they warned that she might also have heart and kidney problems. I sat, numb and scared, next to her bassinet in the NICU as neonatologists pointed out the clinical features of my daughter that made her a baby with Down syndrome: her tiny button nose, the slight upward tilt of her eyes, the way her knees splayed out as she lay on her back, indicating low muscle tone.

When she was five days old, I watched as a team of physicians wheeled her out of the operating room. She was just waking up from anesthesia, crying and pawing at the feeding tube they’d inserted into her nose to give her some of my pumped breast milk. “I’m worried she’s going to pull it out,” I told the doctors before I left for the evening, who smiled and nodded and reassured me that would be impossible for a newborn with Down syndrome.

I returned early the next morning to learn that that evening she had indeed pulled out her feeding tube, right in front of a gaggle of incredulous residents doing nighttime rounds. I made a silent note: Jo Jo, one. Medical textbooks, zero.

That was my first true introduction to my daughter, the ultimate warrior girl. Over the last decade, Jo Jo has been pulling proverbial feeding tubes out of her nose, doing everything naysayers—whether it’s been physicians, therapists, educators, even well-meaning relatives—have said she can’t do.

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Jo Jo saunters through her life with the confidence I’ve always wished I had, especially as a little girl. Sometimes I’m not always aware of this, as she’s not verbal enough to tell me. I worried about her entering fifth grade, for example. All the other little girls in her class seemed to grow up overnight, suddenly into makeup and Facetime and yes, boys, while Jo Jo was still fixated on Frozen and her Barbie dolls.

Then a few of the moms mentioned to me that their kids loved dancing with Jo Jo every morning during homeroom. I think of my 10-year old self, always shrinking into the corners, and I am in awe of my Jo Jo, showing off her moves without a second thought to her admiring classmates.

There are some people who will say that Jo Jo is able to display this kind of self confidence because she doesn’t have the same kind of self awareness of a typical kid—that she doesn’t have the cognitive skills to be shy, or embarrassed, or even realize that she’s different. I disagree. Sure, kids with Down syndrome are often stereotyped as being very friendly and loving, but Jo Jo’s persona is so much more than that.

Some of it’s innate—i.e., she was just “born this way." But a large part of her self-assuredness stems from being around family, educators, and therapists who have always praised her for her efforts, rather than her performance. Jo Jo’s always been encouraged to feel good about what she can do, rather than focus on what she can’t—and when she doesn’t “get” something she’s encouraged to try again and again until she masters a goal. It’s this ability to tolerate failure and ultimately push her way through it that’s built her confidence and resilience.

Jo Jo’s self-assuredness has affected me too, in a positive way. It’s taught me not to be afraid to go up to strangers and smile and introduce myself, to try to make a human connection rather than sticking to the comfort zone of staying glued to my iPhone. She’s taught me to speak up and be assertive, not just when it comes to advocating for her, but for myself, as well.

I’ve learned from my daughter that even when you’re having a truly crappy day, there’s always a fabulous Taylor Swift song to play to cheer you up. She’s taught me that it’s okay to be occasionally vulnerable, to ask for help, and that if you treat others with kindness most will respond.

I still worry about Jo Jo a lot, which is natural—any mother would, especially any mother of a daughter with a disability. I’m not naïve enough to think all the struggles of her everyday life, especially given the current political climate, can be glossed away with the latest Beyoncé song and the promise of a mani/pedi. But deep down, I also know Jo Jo does have the tools to advocate for herself, that her assertiveness will carry her through those times when I’m not around.

And I’m beyond grateful to her, my little warrior girl, for sharing her own skill set to help me navigate through my own life.

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