The Vow I Made After a Girl’s Reaction to My Son Made Me Cry
The amusement park carousel whirred a few feet away from where my son and I were standing, its lilting band organ melody reaching out to us with a compelling beckon. I glanced at the ride in all its old-time Americana glory. The painted horses vacantly gazed into the distance as they rose up and down on their shiny metal posts. I adjusted my sunglasses and looked down at my son, who was pointing at the carousel with interest.
Should we attempt it?
I took a mental inventory of our equipment, quickly figuring out the logistics of making this ride a reality. I hoisted our emergency bag on my back and carefully uncoiled the oxygen tubing that ran from the tank inside to the bottom of my son’s trach tube. He and I were tethered by a long piece of plastic that kept oxygen flowing through his damaged lungs. A sad umbilical cord of sorts.
“Let’s go!” I told him, and he grasped my fingers as his tiny Pumas strode across the concrete towards the ride. At 21 months, he was still perfecting his walk, trying to balance the excitement of running with the careful discretion he reserved for avoiding falls.
Two middle-school-aged girls were waiting at the front of the line for the ride, and my son’s face immediately lit up when he spotted them. His gait quickened, and I laughed as he guided me by the hand to get closer to the girls.
“You’re such a ladies’ man,” I whispered with a giggle.
I watched as he beamed up at them, waving excitedly. His free hand bobbled up and down as his smile grew wider. He gazed up at the girls, anticipating a wave or a smile in return.
Upon sight of him, one of the girls nervously looked away, twirling her hair around her finger, afraid to acknowledge him. The other girl grimaced. She stared at my son’s trach tube, her eyes darting between his neck and the tubing spilling out of my backpack.
“Hi there!” I mustered as cheerfully as I could to her, hoping that a smile would help break the ice.
She continued to stare down at my son, her lips twisting into a scowl. I saw his eyebrows furrow and his smile gradually fall. He shifted his weight from one foot to the other, looking up at me with confusion. He was too young to know what was really happening — he wasn’t accustomed to this type of response to his characteristic flurry of waves and smiles.
I took a deep breath and forced a bright smile again, hoping a question would help convince the girl to respond.
“How are you doing today?” I asked.
I prayed this would break her harsh gaze, force her out of her trance, even spur her to ask a question about him. Anything to stop this uncomfortable moment in time.
Nothing. Her downward glare at my son continued.
I felt my face grow hot with anger, embarrassment, frustration, sadness — even guilt. My eyes stung as I swallowed back irrational, fleeting thoughts with a lump in my throat.
We should have never come here.
I should just keep him in a bubble, away from everybody.
Why can’t we blend into the scenery like everyone else?
Like I said, absurd, irrational thoughts — ones I guarantee all mothers in similar situations have had at some point, special needs or not.
So, instead of enjoying my son’s first carousel ride, I cried. I fought back tears on the carousel, brushed them away on the ride home, ugly-cried as I was recounting the story to my husband, and then wept one more time for good measure before going to bed that night. It wasn’t about the staring, not really. I cried because I realized, in that moment in front of the carousel, that I couldn’t protect my son from this world, no matter how hard I tried. He doesn’t know he’s different now — he is blissfully unaware of the fact that people stare at him and other kids run away from him. But one day, he will know. And I cried for that, too.
I couldn’t see the moment for what it was: a curious girl who just didn’t know how to process the sight of my son. My wonderful, strong, adorable son — a child who I see much differently than anyone else does. In my mind, she became the enemy — a physical manifestation of all of his challenges rolled into one glowering, unmoving stare. Instead of enjoying the moment — his first carousel ride! — I focused on one child’s reaction more than I should have.
Later that night, as I blubbered to my calm, logical husband about what happened that day, he brought up a point that was so powerful, so true that I actually stopped crying to take a shaky breath and listen to him.
One day, my son is going to watch how I react to situations like these and follow my lead.
And if I dissolve into angry, frustrated tears every time someone hurts his feelings or responds in a less-than-positive way, what is that teaching him? Haven’t we all been hurt? Stared at? Bullied? Don’t we all need a person to look up to, someone who can show us how to handle these situations with grace and strength?
Of course we do.
That night, I vowed to be that person for my son. I can’t stop the stares. I can’t protect him from the questions or hurtful remarks. And try as I might, I can’t keep him in a bubble.
But I can show him how to be strong and resilient.
Or maybe, all along, he’s been the one showing me.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to email@example.com. 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.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.