My 4-year old daughter is sitting on a wooden stool in the kitchen eating a mandarin while I’m doing the dishes. All of a sudden with a drained voice she says:
She: Mummy, why do I have this?
Me: Have what?
She: Why was I born like this? (she points at her insulin pump) Why do I have diabetes?
I try not to look at her so that she wouldn’t be able to see the tears that her questions brought to my eyes and I say:
Me: Darling, there’s nothing you or anyone did wrong. No-one knows why the ‘police’ cells in your body that usually fight baddies, attacked your own cells that used to produce insulin.
I can’t help but think that no child should go through life of constant finger prick tests, injections, feeling terrible when their blood sugar level is too low or off the chart too high, and that no parent should live with the constant worry and stress that with some relatively easy mistakes or slight miscalculations they could potentially seriously damage their child’s health, or worse.
Our daughter having Type 1 diabetes didn’t used to bother her too much until now. She was diagnosed at the age of 11 months and so she doesn’t remember life without diabetes. To her, carrying an insulin pump around her waist day and night, having several finger prick tests every day, having frequent cannula changes and insulin injections, taking a stash of emergency sugar reserves with her wherever she goes and putting food in her mouth only if an adult has calculated the carb content of that food has been what she’s conceived as being ‘normal’ and has with a child’s egocentric worldview assumed that that’s the life that all children have.
Now that she’s nearly 5-years old and goes to a kindergarten where she shares daily routines with other children, she’s started to realize the differences between her and her classmates. She’s noticed that in addition to the obvious, like her insulin pump size of a mobile phone hanging of her waist feeding insulin in her leg/buttock via a cannula, she, unlike her classmates, can’t snack on piles of biscuits and sweets at or after school. She cannot go on play dates on her own like her brother can (not until she is older anyway). Neither will it be easy for her to go for sleepovers at other children’s homes when the time comes.
It doesn’t help that Type 1 diabetes is extremely rare in Japan, since it makes her feel like she’s the only one who is different. Over here, in addition to our daughter, we don’t know anyone who has Type 1 diabetes. Well, actually we kind of know one person.
You see, a couple of weeks ago a piece of our daughter’s equipment had fallen out of her pocket during the recess time at school. The monitor, on which we rely 24-7, was damaged and disastrously we didn’t have a spare. To make things worse, we knew that the monitor is not licenced in Japan, and thus it would be impossible to find a new one in Japan. Our only option was to order a new monitor from England, but this meant that we’d have to live without this monitor at least for a week or two. An absolute nightmare situation for us, a situation which would have meant that she could not have gone to school (without me being with her in school every day) and that we would have to test her blood sugar level by taking a finger prick test every 60-90 minutes day and night until we got the new monitor. In a state of panic I sent an email to our daughter’s consultant at Osaka University Hospital and asked if by any chance he knew anywhere in Japan that we could buy this piece of equipment from. When he replied, he said that we would have to order a new one from abroad, but that his colleague, an adult Type 1 diabetic, had offered to lend us his own monitor (the same make and model as ours) until we’d get the new monitor from England! The little diabetic community that there is here in Osaka seems to be as supportive and altruistic as diabetic communities in England and Finland!
My son had overheard the conversation I had with my daughter in the kitchen and he comes to us and says:
He: Will she ever get better?
Me: I don’t know. I hope so. There is no cure at the moment…maybe there will be in 10 or 20 years time.
My daughter: I hope there is.
Me: That would be wonderful. But, you know, until then, we can live with diabetes, right?
When our daughter was first diagnosed we spent a lot of time at the Children’s hospital in Brighton and being there gave us some perspective on these types of things. Ultimately I think that everyone has their challenges, and my husband and I are just like every other parent, wanting our children to be as happy as possible whatever life throws at them. On that measure, I feel like we do a pretty good job and if you met our daughter I think you would agree.
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Type 1 diabetes is ‘juvenile diabetes’, i.e. a form of pancreatic malfunctioning whose onset takes place predominantly in infants or teenagers. Unlike Type 2 diabetes, body weight or the patients’ diet (in particular when it comes to eating stereotypically ‘unhealthy’ foods) prior to diagnosis has very little effect on the onset of Type 1 diabetes.