Guilt – by Jenny Foster

Guilt – it’s a horrible feeling. You would imagine fear, anger, worry or sadness would appear higher on the list of feelings when you live with a child who has Type 1 diabetes and coeliac disease….

…but it’s guilt that is plaguing my life.

Guilt has never been more apparent than when Ewan, (my 8 year-old son who has Type 1 and coeliac disease) was due to return from a three-day residential to Keilder with his school and I thought I’d share it with you in the hope that it will ring bells with other parents and maybe make me feel a bit better!

In the afternoon of his return, I found myself dreading it. I couldn’t believe it, my little boy had been away from home for the first time, I’d not spoken with him or seen him for 72 hours and I was dreading his return?

The reality of course is that I couldn’t wait to see Ewan; I was just dreading the return of diabetes! Selfishly, I wanted the old Ewan to come back from Kielder, not the Ewan with diabetes and coeliac.
I reasoned with myself; I had just had a three day break from insulin injections, blood glucose testing, carb counting and food label checking; I’d had a brief respite and a chance to remember how care-free our lives were pre-diabetes; it was fine to be feeling this way? Wasn’t it?

I still don’t know the answer. It felt wrong – hence the guilt, but at the same time I felt justified. On seeing Ewan tiredly climb down the steps from the coach after his big adventure, looking like he’d not changed his clothes or brushed his hair in days I am happy to say I was overjoyed to see him. In that instant the diabetes did not exist, just the relief to have him home in one-piece put everything into perspective…

…this young, innocent, little boy had Type 1 to deal with for the rest of his life, with no respite, ever – so really, what did I have to complain about?

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oh gosh, i remember walking in to school the day Clodagh (newly diagnosed with T1 and coeliac disease) was coming home from a week at PGL. Looking back I can hardly believe how amazing those teachers were – they said yes to taking her straightaway – it was less than three months since she had been diagnosed. I met a fellow mum who said she couldn’t wait to see her daughter again and I nearly burst into tears. I was dreading my daughter coming home. In under five days life seemed normal again and I was dreading all the worry, needles and testing. She’d had a brilliant time and it was as normal as ever having her home. Everything was fine. I pawed over the weeks levels like a crazy thing!

I am so relieved to read the feelings of other parents of young children with Type 1, Our daughter was diagnosed last February at just 15 months old and when they are diagnosed there is no warning, of the extra over whelming responsibility, worry, and stress that comes with Type 1, and how it takes over your life. I have days when I just want to walk away and never come back, not to walk away from my little darling Imogen, but just to get away from the diabetes and the constant testing, needles and carb counting, visits to the hospital and questions from the consultant. Always trying to remember what our family life was like before Imogen was diagnosed with diabetes, and finding it hard to look at the baby photos of a happy and well Imogen and wondering why it had to happen to her and then feeling guilty for feeling like giving up when I am so tired from being up through the night to make sure she is safe from hypos, but remembering she is our little darling and she didn’t ask for this either.

Hi everyone. I don’t have T1 or a child who does so I have no idea what you are all going through. However, I do know that everyone needs to take time out to recharge their own batteries occasionally in order to be able to cope with whatever it is that is challenging them and sapping their energy.

So, please don’t feel guilty. Celebrate and enjoy those little recharge sessions when they occur if you can. They are what you need to keep up the great work that you do.

I think the guilty feelings start as soon as you are told your child has diabetes, then continue with every high, every low every birthday party etc, i should have done this i should have done that. Bronagh it was great to read your post even if it did make me cry, it is nice to know there is light at the end of the tunnel as a parent of a dibetic child the tunnel does seem very long at times.

Thank You so much for these comments I feel like I say it all the time but it is so great to hear from people who are in the same boat as us, and Bronagh, your comment has made me feel like I am on cloud nine! So lovely to hear it from the childs point of view so thank you so much for sharing Xxxx

Bronagh what a lovely thing to say youve brought tears to my eyes, you are an inspiration :)

We all probably have days when we feel guilty Jenny but if I do ever I think about my next Charity Event and why I am doing it. Gets me through all the training x

To you and any other parents who feel guilty – please, please don’t!! I was once one of those kids with Type 1 (I was diagnosed aged 7) and I’m sure my mum also went through all of those same feelings. But now I’m 23, and I am eternally grateful for everything she did for me (and everything she still does). Looking after your own diabetes is difficult enough, but trying to look after a child with diabetes is a challenge I wouldn’t wish on any parent. So you’re all doing great things, and you are completely entitled to enjoy yourselves without feeling guilty when you get that kind of chance. Take it from someone who remembers being a child with T1 – your children may not be able to express it yet, but they don’t want you to feel guilty. You’re all heroes!!! :)

i am a parent of a 6yr old boy with type 1. We only found out last august and it was devastating,but guilt comes along with pride and happiness. My son handles the whole thing much calmer than me. I worry about his future , times when he wants to go out with his mates and i cant be there with him. i do suffer separation anxiety , and guilt, and have wished it was me not him, but also i feel pride my son is amazing and i love him for his strenghth. x x x

Jenny, thanks for this honest post, it filled me with relief as I feel guilty when I wish I could have just one diabetes free day, just one meal without having to count carbs. Two of my four children, aged 12 and 14 have type 1, so you can imagine how many blood tests and injections are going on each day! Like you, I also enjoy a brief ‘break’ if my children are away for short periods……but at the same time worry that they are ok, and feel incredibly guilty for the brief respite, which I know my children will never have.

I understand entirely where you’re coming from Jenny, I don’t know if anyone else feels it but I also feel guilty if I sneak a chocolate in the kitchen knowing my son cannot share the same luxury. I dont think that people realise just how much pressure there is on parents of children with diabetes to try and sustain some sort of normality for the children, while safeguarding their childs future health with the constant monitoring and stabiliing of blood sugars, and then add the pressure of the health team aswell life becomes one big routine of diabetes. And yes, as parents we do feel guilty about enjoying not having to worry about it, but at the same time we all know our childs health is going to be priority. There is nothing wrong with enjoying adult time, even if as the parent of a diabetic that adult time just means not having to worry about it for a day or two :0)