After my son was diagnosed (he was 11), my wife and I had a long discussion that weekend. We needed to figure out what approach we would take when dealing with diabetes and with our son.
We went in many different directions in this discussion, and fumbled a lot, before finding what we could rally around. We were real beginners at the time, obviously, and we knew precious little about treating the disease.
In the end, we locked onto the one important concept for us, which we have held ever since. We decided that the most important thing was that he never feel limited by his disease.
Since this discussion, we have made many changes in how we deal with diabetes. But the core direction that drives us has not changed a bit: we want him to feel no limits. We want his life to have no limits. And that is how we try to help him live his life. He goes to all the sleepovers his friends go to. He does all the activities his friends do. He plays all the sports his friends play, and more. If anything, we encourage him to go to the edge more than we ever have. He goes to all the sleepaway camps his friends go to, even when our heart is in our mouth. He eats at the cafeteria every lunch.
He jokes with his friends that he has never had as much ice cream as he’s had since he became a T1D. And he is right: we try to make sure he never feels deprived.
What this means is that we have worked like crazy to come up with treatment strategies that allow him to do that – no limits. He does not treat himself at all like most other kids do. We aim for him to have as close to a glucose-normal trace as we can. For instance, he eats at the cafeteria at lunch – but he doses in class 30 minutes before lunch. And we have difficult discussions with his endo every three.months (she thinks he runs too low).
But he has no limits in his life so far.
What is THE most important in dealing with diabetes for you?
I have mentioned this before on another thread, my parents never let be limited or deprived of any experience. I can’t tell you a single blood sugar result or pee test result I had on a particular day or night from decades past, but I can tell you all kinds of stories about things I did with my friends when growing up, things I got away with, things I got in trouble for, all the scams and tricks I got away with, and the bigger number of things I got busted for. All the fun I had.
Not limited by the disease at all, only limited by what I had the imagination to try. I owe all that to my parents.
I think you stated it well Michel. Your son is lucky to have such insightful parents.
For forum name, my vote was for TypeUnlimited for the very reasons you describe. I hope everyone can make it their goal to live like that.
The first discussion we had was whether or not our son was going to die, and/or how long he had to live…seriously, that’s how little we knew about Diabetes…we thought it was terminal.
After we collected ourselves and cried for a few weeks (literally…for me, months of crying alone), we decided that our goal is to care for him in such a way that he’s just as healthy as any other adult when he reaches adulthood, that he accepts this responsibility (and it is just that…it’s one that is being forced on him, but it’s a duty that he has to understand is important for his well-being, and ours…emotionally), and most importantly, that he understands that Diabetes DOES NOT DEFINE HIM; rather, it’s just a small part of him. I want him to grow up to do whatever his heart desires and not let this disease limit him.
When life deals you lemons, you make some kick ass lemonade that everyone wants to buy, then you get Ice Tea to sit on your lawn and say “No! Lemonade!”