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?
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