I once heard a mother describe the love for child with a disability as special because the intensity you feel for your newborn never dissipates.
Those words came back to me this summer. I’ve become again acutely sensitive to his non-verbal cues: the slight pallor of his cheek and glassiness in his eyes that signals a low, the raised pitch of voice and impishness that signal a high. The relationship is again symbiotic as I support his body’s functioning and respond instinctively and urgently to his needs. Waking at 3am, stumbling to check his bloods and, on occasion, to force glucose gel into his mouth, I’m brought back to the early, blurry days of babyhood.
Releasing him to school was as hard as entrusting him to nursery, and we speak multiple times a day to keep him on track. I start to think about getting a babysitter, then his blood sugar crashes out of the blue at bedtime and I think again. I can’t ask another parent to manage his condition in the night any more than I would ask a friend to feed my newborn.
But my son was a robust 8 year old when his condition was thrust on him. He’d just started to experience the independence of walking to the shop by himself, staying at residentials with school, staying at home while I popped round the corner. T1D can’t stop him growing up: I can’t stop him, and he wouldn’t let us.
Because he’s a strong, proud, independent boy, he makes it easy. From the start he has fingerpricked to draw blood for his tests, he has injected his own insulin and I’m thankful that at the moment he is “hypo-aware”, spotting most of his own lows and treating them. The responsibility that T1D children take for their own care is extraordinary. Some self-inject from age 5: I’ve even seen clips of 18 month year olds finger pricking.
Luckily, technology is on the move. Within a year it might be possible my son can have kit that monitors his blood sugar and shares it to my iPhone in real time. I cannot understate how liberating this will be. In the meantime, I’m filled with gratitude for the mothers who have supervised him treating a hypo, for the headteacher who will wake up in the night to test his blood when he goes on a choir tour to France in December.
Parenting boils down balancing being a “helicopter” with letting the kids go “free-range”. I try to appear hands off, frantically micromanaging behind the scenes.
At some point I’ll need to back off though. And that’s when it gets scary. But for the moment I’ll leave you with a favourite poem.
It is eighteen years ago, almost to the day —
A sunny day with leaves just turning,
The touch-lines new-ruled — since I watched you play
Your first game of football, then, like a satellite
Wrenched from its orbit, go drifting away
Behind a scatter of boys. I can see
You walking away from me towards the school
With the pathos of a half-fledged thing set free
Into a wilderness, the gait of one
Who finds no path where the path should be.
That hesitant figure, eddying away
Like a winged seed loosened from its parent stem,
Has something I never quite grasp to convey
About nature’s give-and-take — the small, the scorching
Ordeals which fire one’s irresolute clay.
I have had worse partings, but none that so
Gnaws at my mind still. Perhaps it is roughly
Saying what God alone could perfectly show —
How selfhood begins with a walking away,
And love is proved in the letting go.
C. Day-Lewis (1904-1972