I’m at sea, but that’s ok. I’ve learned that I’m one of the waves. Amongst many. I form some part of the ocean with all the others. The others are parents who also have a child diagnosed with type 1 diabetes. What I’ve learned about this sea is that we sometimes swim and sometimes sink beneath the waves of emotion. The fears, worries, pains (and gains- yes there was that one time) when we view our child’s fragility underneath waves of glucose uncertainty. Beneath waves of technology uncertainty and if you didn’t think I can add any more seafaring analogies think again. There’s been poems written about this! Sending your child off on a boat all alone, watching your child set sail for seas untraveled – that kinda thing! What this means in daily life equates to a lot of questioning, a lot of forecasting, a lot of planning, and a lot of resting.
I have been a parent of a child living with type 1 diabetes for 14 years now. He was diagnosed at age 4. Back in the day, it was years of automatic pilot. It was years of retraining and fitting in care routines with work, studying, and raising our other child. Perceptions have changed over the years but somehow the Big Sur is always there. We’ve experienced the crashing tide of hypoglycaemia seizure and two near-death experience. Just typing that seems insurmountable. Our boat did crash, the harbour was nowhere in sight and the fear seemed to physically engulf us.
What’s all this about water?
You see, we flew to a Greek island. Zakynthos. We’d been before. But this time, I was a newly divorced, newly qualified scientist. We went to celebrate. Arrived in the wee hours. Travelled all night – you know how it goes, that alarm call at 3am to get to the airport on time (remember those days Pre-pandemic?). At 1pm Greek time, we arrived. The kids flung their clothing in a drawer, changed into swimsuits, and ran off into the swimming pool. I tried to keep up! I ran to the hotel pool bar, armed with gluten-free bread for toasties and all the diabetes equipment. Glucose, meters, etc. It was a whirlwind. We were loving the heat. You know where this is going don’t you?
Yes, that’s right, nana nap! At 4pm we rested. Shut the veranda doors and snoozed. Awakened to strange shouting, my son was a millisecond from seizure. I won’t go into it all, because every time I do, I’m back there again. The ambulance, the language barriers, the trauma.
It took years to stop the nightmares. It took therapy (self-funded). It took self-compassion. It still takes self-compassion. Because the fight to keep a child alive is as much a visceral experience as type 1 diabetes is. Perceptions float in and out of past, present, future.
A new wave of present moment living keeps me afloat.
p.s. I applaud you if you adore the Echo & the Bunnymen track Ocean Rain, it’s one of those “lie in the dark/headphones moment” songs.
Diane Morrow - Parent, Postdoc researcher - Type 1 Diabetes and caring 