I tried to hide my diabetes from our kid for a long time. I didn’t want her involved in any way; I didn’t want her to know about it and I certainly didn’t want her to see it.
But as her inquisitive little mind grew and she started asking questions – lots and lots of questions – it became harder to hide things from home. I became an expert at deflecting. If she asked ‘What is it like to have diabetes?’ I would suggest we took a walk. When she asked if she would get diabetes, I would struggle to breathe and, instead of answering her question, would offer to read her a story.Unfortunately, the kid is smarter than me and she found new ways to get the answers that she was looking for.
These days, I try to shield her from the truly nasty sides of diabetes (even though my nasty is comparatively quite mild) and I certainly still hide from her any fears I have. But as an eleven year old, she has an extraordinarily sensitive understanding of diabetes and she has become quite the little advocate.
All of this was playing on my mind last week as I say down to hear a presentation from Kara Maliszewski whose mum has type 1 diabetes. In the abstract to her talk, Kara says her ‘normal’ was ‘…needles in the kitchen, candies and blood sugar monitoring equipment in the handbag, insulin in the refrigerator, pump infusions in the bathroom and the constant voice in my head “insulin to treat a high, sugar to treat a low”’.
Kara spoke about how from a very young age she was involved in her mum’s diabetes care. She was taught to give her mum a spoonful of jam or a glass of juice. I am not sure what Kara meant by ‘very young age’ but it did appear from her talk that Kara’s involvement was significant from when she was very small. I felt uncomfortable about this, thinking back to my own experience of trying to protect the kidlet from all things diabetes. It is only in the last year or two I have asked her to get me a juice box from the fridge if I am really low. Even though her understanding of diabetes is excellent, I have been resolute about not giving her a part in it. Why? Because I don’t want to concern her.
But Kara said several times that her contribution to her mum’s diabetes care actually lessened the fear rather than added to it. This was at odds to my thinking – I have had the idea that by not showing the kidlet the nasty things that she simply wouldn’t know they were even there – there would be nothing for her to be afraid about.
Clearly the effects of understanding and being part of her mother’s diabetes are significantly more far reaching than just knowing what to do in the case of low blood sugar. In fact, as this tweet from Kelly Close shows, Kara believes that her contribution to her mother’s diabetes care has impacted in other ways.
I see that in our girl. She is unusually considerate of others and has a very open-minded approach to most things. She despises unfairness or discrimination of any kind and is always willing and ready to fight for a cause she views as important. She is drawn to the plight of the underdog.
I love this about her. Is it because she is living with a parent who is dealing with a chronic health condition? Is it that AND the work I do that has increased her awareness?
I don’t know. But I do know that I spent a lot of the long flight home thinking about my motives in trying to hide my diabetes from her. Clearly I am not doing it because I feel ashamed. I think, perhaps, the motivation is selfish. I try to alleviate the guilt I feel by bringing diabetes into our family by not sharing it with Aaron and our daughter. I try to own it and hide it and keep it to myself as much as I can, because inevitably there are times I can’t do that and they have to be part of it.
What is becoming more and more apparent as she gets older, (and what was clear in Kara’s talk), is that our kids actually want to be involved – and invited to help – in our diabetes care. These kids are magic in so many ways. How privileged am I to be able to call her my own?