I’m always nervous when one of my children performs. Maybe it’s my childhood memory of the burning shame of forgetting my lines, or the sight of them so small, so vulnerable on a big stage, bursting with pride to take part: I’m one of those mothers staring intently at their child, mouthing their words, on the brink of an embarrassing loss of self-control.
A couple of weeks ago I lost it completely. My boy was in the final of his school singing competition and as he took to the stage I shook uncontrollably. By the time he reached the final verse the tears were flooding down my cheeks with nowhere to hide.
It was an emotive song – one he’d loved since a little boy – and the words were particularly relevant to us now.
And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be.
But few people in the room knew just how pertinent. My boy had been struggling with cold viruses for the past three weeks. Simple enough childhood illnesses but in a Type One Diabetic, the body’s response to illness results in barely controllable blood glucose.
A virus means a round the clock battle against hospital admission for life-threatening Diabetic Ketoacidosis (DKA). During this period the press reported two tragic cases of young people in the UK who lost that battle, and their lives.
His insulin needs had increased by 250% (and bear in mind that normally an extra 25% could result in a hypoglycaemic coma if uncorrected). He has to inject every two hours day and night, with constant watchfulness in between.
The night before the competitions his bloods shot up to 21 mmol/ml (normal is up to 7). They were down again by morning, so I reluctantly let him go into school. As I left to watch the competition, school called, he was back up to 12 and what correction should he have? I made a conservative choice to try to avoid him crashing with hypoglycaemia before it was his turn to sing.
As he took to the stage I knew he was still high. The effects of high blood sugar include lack of concentration, severe thirst, crashing fatigue and (in some people) anger/aggression. His symptoms include raging hunger, breathlessness and a crazy look in his eye.
He sang beautifully, but I could hear the hyper all the way through. And that, dear friends, was why I lost all control.
At diagnosis they tell you that Type 1 Diabetes won’t stop your child from doing anything.
Today’s info graph from Diabetes UK reiterates that it “shouldn’t stop anyone from enjoying a full and active life”. This is true. But it doesn’t reflect the work that it takes to do so. The Type 1 diabetes forums are full of children excelling at sport and dance: their parents share their stories to inspire, but also because others there will know how precarious each day’s achievement is.
Three days ago, after a week of near perfect bloods, we were stalled. Bouncing between extreme highs and a crippling 2.1 low. The next day we climbed a mountain, my pockets full of the paraphernalia that means we can respond to an emergency while we wait for an ambulance in the worst case scenario.
We’re not cowered by this condition. But achievement looks different now. Things might not be how they could have been, and we just need to Let it Be.