Please Don’t Stare, Just Say “Hi” | Living With Scoliosis
When I was pregnant with my daughter, I was SICK. Morning sickness was all-day-carry-around-saltines-in-my-pockets sickness. I’d like to say I enjoyed every minute of it and the beauty of life and all that sweet crap I’m supposed to say as a mom, but I am probably one of the worst pregnant people in the history of pregnant people. Okay, maybe not the WORST, but it felt like it for a long time.
Then, one day, after a billion (or sixteen) hours of labor, out came this beautiful chubby girl with a full head of dark hair. Nine pounds and two ounces of sweet squishy baby. I was scared out of my mind and a total mess, but somehow we were suddenly in charge of this little life. She was perfectly healthy, and cried at all the worst times, and hated the car seat, and did as babies are to do.
She grew and grew and is quite possibly a genius, in my slightly biased opinion. She hit milestones early and charmed all the old ladies at the grocery store with her waves and smiles. She didn’t have a tooth until after she turned one, but we can’t all be perfect, right?
Then, just as she rounded the corner toward three years old, we were stunned by a diagnosis we had never planned on and knew nothing about. My aunt noticed that Emory’s back seemed a little “off”. Her shoulder blades were a little uneven, and her ribs seems to protrude a bit in the back when she stood up straight. I am a nurse, but my “Doctor Google” skills kicked in and got me to the very first result in my quick search: Scoliosis.
Fast forward past an uncertain diagnosis to our first appointment with her orthopedic surgeon. I couldn’t believe my baby would ever need any specialists. She was born healthy and perfect and right on time and with a perfectly straight spine. That day-March 7, 2018-she was diagnosed with Early Onset Progressive Idiopathic Scoliosis. Say that five times fast, right?
I’m a researcher, so I already knew what her doctor at Scottish Rite in Dallas was going to say that day. She needed a cast. A BODY cast. A cast from her underarms to her hips that would hopefully cause her spine to straighten, and most certainly inhibit any hope of snuggly hugs or summer swimming. A cast that cannot be removed and subsequently forces you to master baths in the kitchen sink. Her spine had grown at a 46 degree curve and we needed to do something NOW to fix it so she wouldn’t have to deal with possible future heart, lung, and chronic pain issues. Less than two weeks later we were back and I watched them take her back to the operating room for a full spine MRI and to apply the first of multiple casts to fix her back. My baby was broken and needed fixing and they were going to do it.
And they did…they are.
I didn’t realized it at that moment, but that day I joined a club I never wanted a membership to. A club of moms who have to fight for their kids every day. I became the parent of a differently-abled child and I wasn’t ready for that. I wasn’t strong enough for that. In the realm of struggles, ours are so minimal compared to some, but the moms of this club opened their arms and hearts and told me how changes will become second nature, and to always ask for a second opinion if I’m not sure. I have been volunteering with organizations for kids with disabilities for over 15 years, but that was never MY kid. I had to learn what it feels like to watch my child try something she was able to do just a few days before and burst into tears because bending that way just wasn’t possible anymore. We had to learn new ways to do everything, ways to adjust our everyday life so she could still participate. I had to navigate the stress and worry of trying to explain her limitations to her teachers at school and why she will always have heavy duty tin snips in her bag that are strong enough to cut through the metal and plaster of the cast in case they ever needed to cut it off to save her life in an emergency.
What you don’t realize as you are in that fog of entering your new normal and finding small victories in the fact that everyone is fed and breathing for the day, is that other people are always watching. In fact, other people are STARING.
I noticed for the first time one evening when we went out for ice cream. As we sat outside and Emory ate her blue ice cream covered in gummy bears and chocolate chips, I noticed a little girl staring. HARD. Em had a tank top on that day and so the top of her cast was poking out above the pink shirt that so appropriately read “fearless” in silver sparkle across the front. I tried to ignore it, but every time I looked back over, she was still there, staring. If her eyes were lasers, she’d have drilled a hole in that pink plaster cast. I was angry and frustrated, about to morph into a mama bear version of the Hulk, when my mom noticed and simply stated, “Well. She doesn’t know better. She hasn’t been told that there are kids different from her.”
Mic drop, Granmama.
It was then I realized that it wasn’t this little girl’s fault she stared. She wasn’t being rude or hateful. She was curious and obviously hadn’t ever been exposed to kids who didn’t look like her. She was maybe seven or eight years old and just moments before I had been ready to fist fight her for staring at my little girl.
Our situation is so unique. Emory has never met another kid in a cast. I have shown her pictures, but she’s never seen one in the flesh. She tells her baby dolls on a daily basis that she’s sorry but they can’t have a cast because their spine just isn’t “squiggly” like hers is. She will eventually get her cast off and wear a brace that we may one day be able to hide under her clothes, but some of our friends don’t have that luxury. They’re kids who have never known a life outside of a wheelchair, or in a world where all sounds are heard, or in a place where senses and environments are not always overwhelming. Kids who will always get the stares, and who are old enough to notice them.
So I ask you, if you encounter us or our friends, please don’t stare. Encourage your child to come say hello, to ask questions, and learn about another kid’s world that is so opposite of theirs. Teach your babies that all kids are beautiful and perfect in their parents’ eyes, and that some face daily challenges you are lucky enough to not experience. Teach them that all legs are legs, but some just work differently; that some spines are squiggly and must be fixed and that some kids talk with their hands instead of their mouths. YOU are the reason your child will not stare. Your words and actions and encouragement will teach them that a child who looks or acts or walks or talks differently than they do does not make them any less approachable or special. Kids don’t see differences naturally, but instead are taught them disguised as good intentions of being polite.
So, next time, instead of a quick “don’t stare”, encourage your child to come say “hi”.