An Open Letter to All the Type 1 Diabetes Mums and Dads.

Dear Amazing People,

I say you are amazing, as you work hard every single day and often right through the night, to look after your children who have Type 1 Diabetes, and especially their health. You don’t get much praise for this, as to others on the outside looking in your child looks healthy and ‘normal’, and they just need to ‘not eat sugary stuff’ and ‘have injections'(these statements I hear all the time and they drive me mad), so really what could you possibly have to complain about?

An Open letter to all the Type 1 Diabetes Mums and Dads

 

But as a fellow parent to a type 1 son (aged 10 and diagnosed at 5 years old), I KNOW what you cope with. I know that even if they are older, you will always worry about them, and will need to give them extra emotional support at the ‘I’m different from everyone else’ and ‘My life is rubbish because I’m diabetic’ times. Having my ten-year old tell me that his life was rubbish, was one of the worst moments of my life. I felt real anger at the unfairness of it all and wanted to cry and scream about it with him.

 

However, I didn’t I’m his Mum. therefore I have to be strong for him, and instead tell him that there are so many worse things in the world to have, regardless of how bad it feels at times! I told him how amazingly brave he is, and how proud he makes me every day for the way that he copes with everything that diabetes throws at him, and I also told him that in life there is no point in focusing on the things you can’t change as that is what makes you unhappy.

 

Instead, we had a conversation where I got him to list the main things that he hated about being diabetic, and it turned out there WERE some things that I could help him change. For one, he was injecting at school in the middle of the classroom instead of somewhere private, as he hadn’t wanted to make a fuss about it in front of anyone and ask to move. Therefore, of course lots of children unintentionally were staring and making him feel like a ‘freak’, and this was remedied with a quick chat with teaching assistant and teacher!

 

Another issue I could sort was that he was being sent for lunch early with one friend to choose to take with him, as they were trying to stick to his old routine, despite his class now having a later lunch slot. He now has something sugary from his lunch bag at the earlier lunch time to keep him going, and eats with everyone else. Really that’s all our children wish for, is to be like everyone else! I now have a much happier son, but no doubt we will have more of these moments, as at the end of the day Diabetes is NOT fair.

 

I know as well fellow Type 1 parents, that you have carb counting to contend with, arguments when they don’t want to inject, arguments when they sneak food, arguments when they are hungry but you have already calculated their carbs and you haven’t even started to eat your now cold meal, ketones and sickness day insulin doses to worry about when they are ill.

 

You have to pack a lot of stuff even for a day out, they are more prone to skin and everything else under the sun infections. You need letters of permission simply to take their supplies on an aircraft, and will always have local hospital details on your radar wherever you go just in case, and so many other things that I won’t list as I really don’t want to depress you!

 

I just want you to know, that I DO know what you and I do and what we cope with, and I think you are all amazing for it, and I also think you all need to give yourselves a break just like I need to sometimes!

 

It’s hard not to blame yourself when their levels don’t do what you want them to, and you’re the one in control of the doses, but just remember they are still growing, and growth hormone can be great for the obvious um ‘growing’, but it does mess with their levels, and means you often need to change every single carb counting ratio even though you only did two weeks ago!

 

Also my son’s levels are affected by the temperature, his activity level, whether he has a cold or is ill, if he’s excited, if he’s upset….really we all need to remember we are only human, and who can really get it perfect every time with so many things to contend with?? I also get into the bad habit of thinking of the hba1c test as the ‘bad parent’ test, but really I am doing the best that I can.

 

You ARE doing a fab job because you are doing the best that YOU can do, and that is all that anyone including yourselves can expect!

 

With the Highest Regard,

 

Stephanie Couch (Stevie!)

A Cornish Mum

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21 Comments

  1. 26 January 2015 / 2:36 pm

    Wow – it sounds like you are doing a fantastic job to me! Can’t even begin to imagine how hard it must be to keep track of carbs and sugar levels etc.

    You are all amazing xxx

    • 26 January 2015 / 2:39 pm

      Thanks lovely! Bizarrely it’s so much a part of our lives now I forget at times that it’s not ‘normal’! It can be incredibly hard at times, especially when my son gets ill, and we’ve had a few hospital dashes in an ambulance, but he is what makes it so much easier.
      He’s fab about it all, has started doing his own injections, and just generally doesn’t let it hold him back, and it does get easier the longer we’ve lived with it (5 and a half years so far!)xx

  2. 26 January 2015 / 4:36 pm

    It’s the carb counting that is the most wearying because it’s day in day out every single meal relentless. Then it’s the unexpected that makes her so sad and spoils her day – like the crisps or biscuits that no-one told her there was going to be before she calculated her carbs and took her injection, so she can’t have them. And then it’s the bad numbers when you’ve done absolutely everything right, that is so soul destroying. Nothing about it is fair, and the fact that people can’t even begin to understand (can’t really be expected to) just makes it all the more distressing.

    But you’re right. Dwelling on the unfairness, and focusing on the awfulness, will only ever lead to despair. And so we have to focus on the fact that it is possible to live happy and healthy, if you can come to terms with your emotions, and still have a great life. I agree x

    • 26 January 2015 / 5:03 pm

      I definitely found that with carb counting to start with as well, but it does get easier! When we go out for the day, I either take a carb counted packed lunch, or I estimate it, and annoyingly sometimes the estimates result in better glucose levels that my ‘proper’ calculations! At least if she does go through with having a pump, then it won’t matter if she decides she wants more food, or even so much what time she eats, as she will be able to add more insulin whenever she wants! My son doesn’t want the pump at the moment, but I can understand why so many do opt for it!
      At her age as well hormones will be playing a big part in messing with her blood results, so just remember that when you’re having a what on earth have we done wrong moment over the bgs! :) x

      • Helen Wills (@ActuallyBlog)
        26 January 2015 / 5:11 pm

        I try! :) Thanks

  3. Becca
    27 January 2015 / 8:46 pm

    This sounds really difficult, well done for coping so well! I think it’s one of those things life throws and it’s not nice or fair, but you have to just think well it could be worse! Well done you xx

    • 27 January 2015 / 8:48 pm

      Thank you, and this is exactly how I feel! Dwelling on things never helps, and when I have a bad day with my son or having an ‘it’s unfair’ moment, I now have lots of fab type 1 peeps and type 1 parents as friends on twitter who lift me up again, and remind me it’s ok not to be perfect! :) x

  4. 28 January 2015 / 1:33 pm

    This is a great letter, quantifies everything us mums do and loose sleep over. My son Jack is 14, he was diagnosed at 10 but is amazing, he just accepted it from day one that god. Its weird how it just becomes part of you, part of your family but my biggest anyance is my dinner always gets cold xx

    • 28 January 2015 / 1:40 pm

      Thank you :) My son is 10 and a half and had it since just after his fifth birthday, which means he has been diabetic for more years in his life now than he has been non diabetic which caused a wobbly moment on my behalf when I realised this! Luckily he also is pretty darn amazing, they all are really for what they cope with!! And as for cold dinners I have so been there! These days though I have appalling table manners whilst I eat left handed, and use my phone calculator with the other!! We go through scales at a ridiculous rate, as they get so over used. It is odd though how ‘normal’ it all feels after a while though isn’t it? When he was first diagnosed I really didn’t feel that we would ever get used to it, or that life would ever feel vaguely normal again!
      I’ve had a quick peek at your blog and love some of your type 1 posts by the way! I’ll have a proper nose later on when I have more time :) xx

  5. The Giggles Family
    29 January 2015 / 9:48 am

    Can’t imagine how hard this is to cope with for you and your child. Totally agree that kids just want to feel “normal” and be treated that way especially at school. Fingers crossed for a safe and healthy future #brilliantblogposts

    • 29 January 2015 / 9:51 am

      Thank you! Thankfully most of the time we get along with it all fine, just a constant battle under the surface! He’s amazing though, and the way his school friends and little brother look out for him always makes me smile! He’s pretty much the class hero at times lol!x

  6. HonestMum
    31 January 2015 / 8:36 am

    You are doing an incredible job and this will inform and reassure so many. Thanks for linking up to #brilliantblogposts x

    • 31 January 2015 / 10:58 am

      Thank you! What a lovely thing to say :) x

  7. Michaela
    13 June 2015 / 10:12 am

    This is a lovely post. Even though Will doesn’t have t1, and cerebral palsy is very different, i can see so many similarities here. Hearing will tell me he hates his legs, that he’s rubbish at football etc tears me up. I Definitely think the emotional side is harder for me to handle than the physical issues.

    He mainly takes it in his stride but at Easter he told me about a few issues surrounding lunchtime, issues I could sort out pretty sharpish. And the change has been brilliant. He’s much happier.

    reading things like this makes me feel like I’m not the only mum in the world in this situation.

    You’re doing a fab job Stevie xxx

    • 13 June 2015 / 10:49 am

      Aw thanks Michaela lovely, we all do what we can for them! I’m always so proud of Fun and how he copes and rarely feels sorry for himself. Will is an absolute star as I know he’s the same, and they’re bound to have their little moments where everything gets too much. Here’s to our amazing, brave and slightly crazy boys ;)

      Stevie xxx

  8. 17 June 2015 / 11:55 am

    Oh wow I can’t even imagine how hard it must be for both of you. But this is a brilliant post describing what you’re going through. You’re doing a fantastic job! :)

    • 17 June 2015 / 12:27 pm

      Thanks lovely, we do what we need to to keep him healthy, he does the hardest part of living with it and putting up with all the injections etc!

      Stevie x

  9. shirley pearson
    19 July 2015 / 5:28 pm

    My 17 year old daughter was diagnosed 2 years ago at 15. A very difficult time for her (and me) with the usual teenage problems, growing up stuff etc. Your article has given me positive vibes and for that I thank you. Good luck to you and your son and thanks again. Shirley @slightlymad60 (twitter)

    • 6 November 2016 / 12:39 pm

      I have only just seen this, apologies Shirley x It’s hard to be diagnosed at any age, but I can imagine as a teenager it definitely is. My Type 1 son turns 13 next year and he struggles at times more now with his Type 1 than he did when he was younger … I think the unfairness of it hits them more at this age.

      Thank you for your kind words and I hope your daughter is doing well!

      Stevie x

  10. 1 March 2016 / 1:37 pm

    Hi Stevie,
    I just wanted to say a massive thank you for this post.
    My 17 year old son was diagnosed with Type 1 on the 25th Sept 15 and its been an emotional roll coaster.
    I somehow blame myself. Lots of what’s and where’s….what if I had tried to breastfeed him longer when he was a baby…..what if I had made him eat more fruit….where did I go wrong!!!!!!!!!!!!!!!!!!!! And many more.
    Its all still so new and raw for me, with lots of first experience’s.
    Reading your post has made me have a little cry and helped me understand things will get better and there is a network of support out there.
    Best wishes to you and your family
    Caroline x

    • 6 November 2016 / 12:44 pm

      So sorry for only just seeing this! It really is so easy to start blaming yourself, but even the experts have no idea ‘why’ and in the Type 1 groups I am in on Facebook every time people try to compare their own parenting with other Type 1 parents to find similarities that could have been the cause … the results are that we have all done things completely differently.

      There is no pattern of it being more likely in bottle fed babies, babies who were weaned early or late etc etc, it isn’t something that we could have prevented in my opinion and we all need reminding of that on the bad days. I hope your son is doing well lovely.

      Stevie x

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