Frank's been diagnosed Type 1 diabetic, for nearly 600 days. It's not just the 1800 finger-prick blood tests, or the 1200 insulin injections since then. (And the sums will be much larger for the next 600 days.)
It's not just the side issues of excessive thirst, and the consequent bedwetting, sometimes needing three sets of a linen per night.
It's not just the health implications of his conditions - will he lose his sight by the time he's 15, will he have kidney damage by the time he's an adult, will his circulation deteriorate so that he becomes gangrenous by the time he's 30, will he suffer the pain of neuropathy, will he have a stroke or heart disease at a young age, will he develop related conditions like coeliac's? And who will look after him if we're not around (yes, we're all getting older..)?
It's really not the diet, coming up with suitable meals for diabetics is no problem for foodies like us. Calculating carbohydrates and insulin doses is a doddle.
What's so difficult is the incessant nature of it all. It's not just an every morning pills cocktail, it's not about remembering to take a set dose before each meal, in the way one would for some diseases. With diabetes, it's about watching all the time, looking for signs. We take into account what has been eaten, how much insulin has been given (and what type - he takes two), how far out of "normal" range he is, and the balance between carbs, protein, fats recently consumed. Then it get spiced up with thinking about exercise he's had in the last few hours, what's happening now, and what's coming up next. Then we can only guess if he's having a growth spurt or fighting a bug he's recently been exposed to. Constant observation, and fine tuning with insulin shots or snacks or pushing him to exercise.
"I gotta keep movin', I've gotta keep movin', blues falling down like hail" And that's our life with Frank, keeping moving, checking him every ten minutes, running through the mental calculations to assess where his blood sugars might be, avoiding the hail that could blast him off balance, into hyper- or hypo-glycaemia, with more damage to the body, and the possibility of coma, brain damage and death. "And the days keeps on worrying me, hellhound on my trail"
Frank's parents are run ragged by it all. But Frank looks well on it all; he appears and behaves like a normal healthy little boy. Knowing we are doing our best with a very imperfect and rickety assessment, is the greatest possible reward. It keeps us going in the face of the Hellhound that will never leave us alone.
("Hellhound on my trail" recorded by Robert Johnson, Dallas, 1937)