Meet Elliot.
Elliot 15yrs (Montreal, Canada)
“What we’re looking at here is a slight anomaly in your baby’s development.” 13 words that u-turned our lives almost 16 years ago. The ultrasound technician had no way of knowing what a “slight” understatement his turn of phrase was, just as that day we had no idea of the rollercoaster ride we’d just bought tickets to or how special our special girl really was.
So we just buckled ourselves in, held on tight and plunged heart first into the dips and dives that are life with a rare disease; hopeful climbs of therapies and treatments, plummeting drops of symptoms and surgeries all connected by twists and turns of hypotheses and the occasional heartbreak.
We mastered little known arts – the art of spelling medical terms we couldn’t pronounce (periventriculawhaa??), the art of juggling weekly medical follow ups with therapy sessions and trips to the pharmacy somewhere between dropping the other kid to gymnastics, submitting the annual report to the boss and getting dinner on the table by five. And we became experts in the arts of whiling and waiting – whiling away time while waiting for clinics to call, or test results, or doctors to show up while we waited for our turn to wait a little more in yet another waiting room...
Like on the day of this photo, when while walking around waiting for our next appointment, we happened across this Little Hercules statue guarding the courtyard of the children’s hospital and read the telling phrase engraved in its plaque,
“I will be strong.”
No future tense needed. She’s always been the strongest kid around.
She is strong as she patiently holds her breath wondering if this lab technician will be quicker than the last one to find a vein under her thickening skin.
She is strong as she reminds the anesthesiologist that no, this isn’t the 28th time she’ll be in the operating room but the 29th.
She is strong as she watches other kids romp through lives so different from her own.
But mostly she’s just a regular kid living her best kid life. A kid who rolls her eyes when asked to please please do something about that mushrooming pile of laundry…A kid who could give Garfield a run for his money in a lasagna eating contest. A kid who dreams of one day creating the gastronomic delights she binge-watches on the Food Network. A kid whose purest joy is giggling at her 5 brothers’ and sisters’ ridiculous antics every Sunday at family dinner.
A regular kid whose giggles fuel us as we wonder what our futures hold. As we realize we’re pretty strong too. After all, we’ve had the best of teachers.
#myhresyndrome
#myhrestrong