Living with a child with Type 1 Diabetes: feeling the guilt

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Almost a month later – living with a child with Type 1 diabetes…

November came and went, what started on Halloween over ran into firework night and it is only now as the Christmas lights start to twinkle in the stores that I finally feel like me again.

For the last month I have eaten, dreamt and thought about diabetes from dusk till dawn, I have fretted over my daughter in a way I didn’t even know existed, I have tantrumed like a toddler and cried like a baby.  I confess I am tired of learning about illnesses and conditions I have never had time for before.

My mind is a confusing mess of guilt and chaos,  I know when well-meaning people tell me it could be worse they are right, I know kids facing cancer, children with desperately ill parents and this makes me question my almost grieving nature.  I know it will be ok because  I will make it that way, but still I wish it would just pack up and go away.

Coping when your child has a lifelong non curable illness is a curious sensation, it won’t kill her and I can’t fix it which is problematic for a control freak like myself.  I can try to manage the beast that is Type 1 diabetes but so far it has out foxed me almost daily.

It doesn’t change anything, but still it affects everything, spontaneity seems lost for now as we are governed by insulin, needles, and times.  Independence has all but abandoned my clever little girl; I am her new best friend, she gets a party invite and we both go, she goes to dance and sees me smiling sadly through the window.  I was the mother who celebrated with gin at the first drop off party for my children, who ran through the door itching for two hours of childfree moments.  It is a cruel twist of fate that now pins me to her with a condition that means I can’t leave her unless you are trained to care for a diabetic child.

I try not to think of the future, the dreaded teenage years, but at night when sleep should be cradling me I close my eyes and see hormones dancing like crazy, the lure of a secret glass of wine, the insulin pen forgotten on the table.

And I pray, in my own way, to someone I am not convinced I believe in or like very much.  I pray for a cure so I don’t have to count carbs manically when dinner arrives on a rare night out, I pray for a reason to not watch my child inject four times a day, I pray because I want to see a way out of this disease.

How are we coping? 

We are coping.

How do we feel?

A little enraged, a lot fecked off.  I used to worry that twin girl never got a mention on this blog, sandwiched between her brothers antics and her sisters hospital trips.  Irony can be a bitch at times.

And the guilt, the guilt that burns with the knowledge that maybe we should be happy it is not something worse, the guilt that tells us many face worse and do it with a better nature and a bigger smile.

How is Molly?

She is the sunlight amongst this, she is still the same girl she was before but more balanced now her sugars are under control.  Untreated diabetes causes mood swings, bed wetting, high emotions and for a while I thought I had lost the carefree child I loved so well.  She is back, no different, still six and occasionally stroppy, still silly and daft, still beautiful and caring, my first-born child.

I will learn much from her.

 

22 thoughts on “Living with a child with Type 1 Diabetes: feeling the guilt”

  1. I’m sure you have it the right way round, the way the blog said she is a child with type 1 Diabetes not a diabetic child. I cannot think of any reason why anyone would not spend time learning how to deal with the annoying medical bits would let that interfere with them enjoying time with your first born.

  2. I’m sure you have it the right way round, the way the blog said she is a child with type 1 Diabetes not a diabetic child. I cannot think of any reason why anyone would not spend time learning how to deal with the annoying medical bits would let or would let that interfere with them enjoying time with your first born.

  3. Hugs so much for this. I know just how you are feeling and I know that one day we will be able to look back and say our children HAD diabetes. I think that’s the one thing that gets me through each day, knowing that one day there will be a cure and not just a treatment.

  6. This post really hit a nerve with me – I’ve a son with multiple severe allergies ( and some not quite so bad, yippee!) and asthma (a few stays in hospital – sometimes well under control other times a real struggle) We don’t leave the house without what seems like an enormous amount of medicines (just in case) aaarggghhhhhhh. But like your little girl my son takes it all in his stride, doesn’t complain when he can’t eat the same as other and is a happy kid : ) There is certainly alot to be learned from them!
    Wishing you all well x
    ps also hanging out for a ‘cure’ !!!!!!!

  7. Great believer in learning from our children too, they quite often have it more in perspective than us stressy mum’s don’t they! x As for feeling guilty about feeling how you do, there is totally no need. You have ever right to feel that way because that how you feel and you can’t help that.

    My two both have friends with Diabetes type 1 both since 2 years old so I guess they grew up with it. Whilst it is all new it will feel harder but Molly is so strong and sensible before you know it she will be saying leave me at the party and before long you will know that is okay. There will be sleepover’s, I had the honour of being the first sleepover house to one of said friends. I stressed and worried but was so impressed how normal and grown up a 9 year old (at the time) was about it.

    Sending big hugs to you all, Molly looks a total star and they are getting ever closer to a cure x x x

  9. Your last paragraph says it all. Being treated is making such a difference and hopefully things get easier as Molly gets older 🙂 And, as I always say, it’s all relative and although we always know there are worse cases than us out there we’re entitled to cry and lash out too! It’s all part of the process. Glad to hear you’re starting to get back to yourself, you’ve been through a lot!

    xx JAzzy

  10. What a lot to deal with. Hopefully things will get easier as time goes on. I know how annoying I found those few months of pregnancy with gestational diabetes and what a pathetic case i was struggling just to do the pinpricks (the kids used to help me do it!) so it must be really tough to be injecting insulin. It really opened my eyes to all the brave kids out there who do have to go through it day in day out. Well done to all of you. Big hugs and thinking of you x

  11. Don’t feel guilty about feeling guilty. Sure you it could have been cancer, or you could all be ducking bombs in Syria or fleeing militia in Congo, but that’s not the point. Diabetes is awful bad luck and you are absolutely entitled to think ‘Why me?’ As for teenage recklessness, I’m pretty sure that by then the rituals and the sense of self-protection will be so ingrained she’ll do it automatically – or, like a teenager in our family, have one of those portable drips which mean she can live and eat normally.

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