When your child realizes that she has a serious, long-term, illness

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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.

17 thoughts on “When your child realizes that she has a serious, long-term, illness

  1. Oh man, my heart goes out to you, M. I can’t really imagine how you deal with this on a daily basis — it taps into so many parental fears. So far, my son has been healthy (knock on wood) and the craziest scare was a bout of pneumonia that took us to the ER. That scared the shit our of me and reduced me to tears. Not that you have any choice (or would ever have paused to consider), but I marvel at your strength and devotion to your daughter. I think you’re awesome.

    • Oh, this is so sad. I really feel for you. But hopefully she will be better off with her health later in life. Some of these childhood illnesses just disappear. Hopefully this is one of them.

      • Oh, I so wish that Type 1 diabetes was one of those illnesses that children grow out of, but unfortunately it’s not. Our daughter’s white cells have destroyed the insulin producing beta cells in her pancreas. This means that she is physically unable to produce insulin – an important hormone to human life (and hence we have to give it to her via an insulin pump). But medical research is currently taking huge steps towards a potential cure, for example with stem cell therapy (i.e. growing new beta cells) and re-programming of the white cells. We hope that one day they will be a cure ❤

  2. I am very sorry that your daughter has Type I diabetes, because I know that coping with the disease poses significant challenges. As you indicated, scientists are working hard to find a cure for it, and they have made significant progress. Perhaps the story of my next-door neighbor will illustrate that there is one possible good effect of having the illness. My neighbor, now 68, was diagnosed with Type I diabetes when she was a young child. She and her family learned how to take care of her body, and she has had very healthy habits and practices since then. A lifetime of healthy living has not only prevented the development of any complications of her diabetes, but has rendered her a very healthy senior citizen (i.e., no other problems other than diabetes). The only reason I even know that she has diabetes is that she told me, since I am her exercise partner and part of her back-up system if she needs help. (In the 10+ years she’s lived next door, she never has.) My neighbor, a very active, spirited and independent person, definitely has not been, and is not, defined by having diabetes. I wish the same, and a cure in the near future, for your wonderful daughter.

  3. When my son was diagnosed with Type 1, at the age of 2, I found it incredibly hard to talk to anyone other than my husband about it, as I would invariably break down in tears. No-one understood Type 1, or it’s implications, and I knew of no other young children who had it. One of the first non-family members that I told was actually my hair colourist (yes, I know how that sounds)…! She told me about a friend of hers who had a thriving Type 1 child of the same age, which made me feel a lot less isolated and scared. She mentioned that this friend lived in Japan, and I am assuming, from your name, that it may well have been you (I live near Brighton… small world). So… this is the second time that I have found myself touched by your story. Thank you for sharing it x

    • Oh wow! Danielle? Gosh, what a small world! I’m sure that the Royal Alex has put you in contact with other families with Type 1 children in Brighton, but if they haven’t, or if you fancy it, maybe we could meet up sometime when we are back in the UK 🙂

      PS. Your message made my day – I think it is just such a weird coincidence!

  4. This strikes a cord with me. I find myself having these conversations fairly frequently with Betsy now. She has only recently realised she is any different to other children har age and tells me she doesn’t want ‘special bones’. You try and stay positive and upbeat for them but it’s so hard to know what to say.
    Can’t wait to see you all again before too long.

    • Hi Debs,

      I think you with B and us with M will have many similar issues to deal with, not only now when B and M are starting to realise that they have a medical/physical condition, but also in the years to come. But I feel that ultimately, regardless of their conditions, both B and M are lucky in that they can do and be most things that they want to do/be ❤

      Looking forward to seeing you in the summer x

  5. My daughter is 6. She was diagnosed with type 1 diabetes almost one year ago, and she handles it well for the most part. Occasionally she will tell me she wishes she could go back in time to before she had diabetes. It breaks my heart. I hate that they have to go through so much at such a young age.

    • A cure would be amazing, but by looking at the current research (e.g. in artificial pancreas and coating of beta-cells) I believe that even if there was no real ‘cure’, the next 5-10 years will bring huge positive changes to T1 care ❤

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