Today, we lied to our five-year old boy. He said to Julie "can I die from being diabetes?", and she said "no".
We love his incessant questions, as he tries to figure out the world around him; and we always try to give him straightforward truthful answers. So why did we lie to him?
Frankly, Frank has enough on his plate, dealing with the disease, receiving dozens of pin pricks every day in our pursuit of blood samples for testing. Having new plumbing every two or three days, to link his insulin pump to the fat in his buttocks. Hearing endless discussion every day about his meter numbers, and what we do next in our attempt to keep his blood sugars close to the normal range. Listening to us going on about carb contents of his next meal, and having it all again as we decide how much to take off for the bits he hasn't eaten. Pulling him up, and holding him still, to try to assess how he's feeling, and allowing us to pump insulin into his body.
He needs to grow, and to sleep, like any other kid. He doesn't need to lay awake at night, worrying about how good is the quality of his care, and wondering if it may all be in vain. He should be able to enjoy the sleep of the innocent; tired from the day's physical activities.
Concern about his sudden or long-term death shouldn't be necessary for a little kid, that's the parents' job. A job we'd rather not have, but that's what we've been dealt. Our task isn't just his physical health, we need to consider his mental development too, and we try hard to get the psychology right. (But of course we sometimes slip up....) So we focus on the great life we have together, and try to be matter of fact about the many episodes in the day that are dictated by diabetes management.
So, yes, we're happy to be liars on top of carers, if it shelters young Frank from the harsh realities of his condition. And when he's older we'll review our stance on the "will I die of diabetes?" question.
PS: WE ARE very grateful for the opportunity we have to look after him, and for the medical care that's available. Best wishes to anyone who is dealing with a chronic condition - we know quite a few of our followers are, and not just diabetics.
Carers first. It sounds like you are makimg the best of the situation for Frank and not simply dodging a tough question.
ReplyDeleteI'm sure he will understand one day that you made choices with him first in mind and your regrets and fears about 'lies' a long way behind.
Best love,
Al.
Put on Facebook, with a link to this post:
ReplyDeleteFrank asked "can I die of diabetes?" and we said "no". Were we right or wrong to lie?
Lorrie Ringis K is 3 and I am very honest with her-I do not candy coat anything
Andrew Stanley Budd Thanks for your response Lorrie Ringis. Of course my question was rhetorical, there's no right or wrong, we all just have to deal with stuff. Best wishes to us all!
Jessica Farhadian Andrew, it's hard when you have to lie to your child but there is a time for everything and it's not when he is 5. I think you did the right thing. He already has so much to deal with, in fact the nurses did not even want to tell my son all the negatives at 12 but we slowly did tell him. Now of course he knows more than us about diabetes.
Sarah Hearn Well said Jessica - was thinking along the same lines.
Jo Dury We are pretty straight down the line with Emily. The subject of death and diabetes has yet to come up , but she does know about death in general. She does know her diabetes can make her very poorly, esp when she is sick and it might mean she ends up in hospital and there might be an ambulance involved. Our recent discussions are about her 'being normal'. Conversations like this with 4 years , what is the right answer. You know Frank best - the time will be right when it is right X
Rosemary Wilkins For what its worth, I think you did the right thing x
Louise Walklett Baulch Is Frank old enough to know what DIE means? I didn't think children grasped that till they were about 7. I think you did the right thing. Sometimes it is best to lie. x
Lewis Lansford It may be more about death than about diabetes? A cousin of mine is diabetic (from childhood) and the prognosis was never good. But he's now 46 and alive and well and married with kids. But by the time I was 18, I'd lost a friend to a car accident and another to a mysterious brain haemorrhage and since that time have lost a handful of friends who died tragically young and all of them unexpectedly. All that seemingly premature death has had the affect of making me contemplate the fact that none of us can assume we'll grow old. Which is an observation, but not really an answer to your question!
Andrew Stanley Budd Thanks everyone for your comments, and kind support. Jessica Farhadian, I wonder when Frank will know more about it than us? There are certain aspects he must already know, through feelings and instinct, that we don't grasp. Jo Dury, we tell Frank his condition is serious and thet we do all this stuff to stop him being ill, but we still might have to go to hospital sometimes. Louise Walklett Baulch Frank has started thinking about death at some level, possibly linked with his fascination for the natural world, he's watching loads of wildlife dvds, covering life cycles, and also the food chain! Lewis Lansford I think Frank's just thinking about mortality for us all, not just his own. The prognosis for a T1 diabetic is quite good, but even with good management there are sudden deaths from the disease. I'm a bit of a stats guy, and look at the relative risk of different activities/ conditions. As you infer, it's good for us all to sometimes consider that we can't assume we'll see the day out. About 10 people a day in the UK set off on a journey, and get killed in a road traffic incident. And there's meningitis, and plummeting asteroids to worry about..... Enjoy the weekend, everyone!
I agree you did the right thing. He has enough to worry about. The thought that he may die overnight would probably cause a sleep disorder.;... way too much anxiety for a five year old. I worry as well, but take comfort in the fact that death due to hypoglycemia is rare. Yes, it can happen, but it is rare.
ReplyDelete