From the first day on an insulin pump, Mr T wanted to press the buttons and to deliver insulin HIMSELF. That was fine by me - it is HIS diabetes and naturally he wants to be in charge of it. He wants to control it. Of course I was overseeing every press on the buttons as I guide him through it. That was three years ago when Mr T was 6. He would give himself insulin in that manner once or twice a day, then he would lose interest and for the rest of the day I would operate the pump. |
At home, Mr T often hands the pump back to me. He is just too busy to operate it at times.
Many things have changed since his return from diabetes camp. At the camp he spent 5 unforgettable days with his peers, 9-12 year olds. Those 5 days seemed too long for me but they weren't long enough, according to Mr T. This was his first time away from us for more then a night and he did not know any of the kids going to the camp. I must say I was a bit apprehensive before we dropped him off. He must have been too.
During the camp the kids were encouraged to try doing something for the first time. For him it was the insertion of a cannula. He did his first change of infusion set there and he has been doing it by himself, ever since. They had such a great time with all the Olympic Games activities organised by the staff. They learnt together, they counted carbs, tested and bolused together. Their group leaders, young adults with diabetes too, were such positive role models for the kids.
Since the camp Mr T has even said, Diabetes is totally COOL.
Even if they find a cure he would not take it.
He wants to have diabetes for the rest of his life !
Of course there were times during these 6 years that he had had enough of diabetes. He wished he did not have it, but most of the time he appears too busy with other, daily kids stuff, playing and imagining that finger prick checks and insulin simply happen and he just runs off to the next activity. I do have a feeling that he has learnt a lot at the camp, he has seen many other kids checking their numbers, counting carbs and giving insulin. He has seen their leaders do it with ease and he has wished he can be the BOSS of his diabetes.
Mr T has adopted diabetes. It is HIS and HE wants to control it.
And then, the other day came a question at school pick up:
Mr T: Mom does + Temp Basal lower or raise BG ?
A chill went down my spine. I am thinking: What did he fiddle with? Did he overdose himself ?
Me: + Temp Basal gives you extra insulin and it will lower your BG. Why are you asking?
Mr T: Hjuuuu! Good. My BG was 8 at lunch so I put + Temp Basal 20% for an hour.
Me: Please do not do that on your own. Call me and ask me first. I will explain everything to you. I will teach you everything I know and then you'll be able to do all these things by yourself. If you happened to give yourself too much insulin, your BG would go too low and you know how unwell you feel when your number is low.
Mr T: I just wanted for my number to be 6 ! (how sweet is that!)
He then tested and showed me 7.2 - You see Mom - it worked!
There, the new stage in our life has begun. I am very pleased that he wants to take charge. This is much better then if he were completely dis-interested in anything related to diabetes. Of course I will make sure I transfer the knowledge slowly, bit by bit. As little or as much as he can accept at the time.
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This story reminded me of how narrow the line we balance on every day is, as we managing Type 1 Diabetes. It reminded me how much I need to teach him to prepare him to be able to continue learning about diabetes by himself. It reminded me that diabetes is HIS.
I glanced into the future and realised that I will have to accept his beginners experimenting, his mistakes and forgotten boluses. I will need to accept that his control, at the beginning of his "reign" will not be as good as the one I can achieve now after much trial and error. BUT it is HIS DIABETES - his life long companion and it is completely understandable that he wants to be in charge, at least a bit for now.
No other way - forward to the next stage, step by step.