(A Story of Duchenne’s Muscular Dystrophy in China)
I glance at that little boy…
Chubby-cheeked still, and glowing
With the accomplishment of that slight
Gain in height that comes with standing –
Feet firmly splayedIn the one position that gives balance
To legs already beginning to betray him.
His Dad swoops in,
Large hands easily covering his son’s feet
And, with a jerk, “fixes” that splay
Attempts – with ignored futility – to
Ward off the years on steroids,
In a wheelchair, with ventilator protruding
From a too-young throat.
In that moment, that motion,
I am paralyzed by possible versions of that scene
Playing out later to this child – adolescent – man:
This beautiful boy who – even now –
Is taking my white hand
And calling me “Auntie,”
Telling me “not to worry,” since he can
“get me to the fruit stand”
Told to run faster, jump higher, be MORE
But be more in ways a deletion prevents.
Always a disappointment, never valued
By the one person he seeks, no needs to impress
…in a society still shunning
An antiquated construction of handicap
That doesn’t have room for the brilliance I see
In this 3-year-old’s eyes.
Unless something changes.
Who can we help –
Father, son, or society?
…as guests in a foreign home?
Catherine Jay is a second-year medical student who grew up in enough countries that the Toronto airport feels like home. When she’s not in the mountains, she loves to trick people into eating homemade vegan desserts, sail, spread her love of purple, and curl up with a good book. Working with families affected by DMD in China keeps her Mandarin from slipping away… but more importantly has been a grounding force when the demands of medical school become overwhelming.