Written by Emma Ratcliffe.
Remember when you are in that really hard newborn stage with your kids, and you’re never getting more than 3 hours sleep at a time? When you’d give anything for a full nights rest?
That stage is temporary for most parents but for Type 1 parents, it’s the new normal.
The exact cause of Type 1 is unknown. Usually, the body’s own immune system mistakenly destroys the insulin-producing cells in the pancreas, resulting in a dead organ.
Our job is to be that organ, via multiple daily injections or through an insulin pump which is worn 24/7.
My husband and I had very little exposure to Type 1 Diabetes until our son was diagnosed at just 3 years old.
I remember sitting in the hospital with my 2 sons (my youngest was 5 months old at the time), my husband rushing there from work and just seeing me white in the face.
All I said was “he’s got diabetes, the bad kind”. Which I now know is one of the worst things to say to a diabetic.
Image: Tadhg in hospital at time of diagnosis
“He had always eaten so well, was active and we had no family history, we were gobsmacked”.
What ensued the next week, month, 6 months and even now a year and a half later, is a constant battle of sleep deprivation, stress, tears, anxiety and medical training.
Checking blood sugars 3 hourly, including overnight with alarms at 9pm, 12am and 3am. We are alerted of a high or low between those times via our phones, linked to his Continuous Glucose Monitor (CGM) so we have alarms to wake us up.
All food must be weighed and measured, to work out the insulin dose each time he eats to keep his blood sugar within range. Too much insulin and he’ll go low, not enough and he’ll go high, both with different consequences.
He wears a CGM which tracks his blood sugar levels to save 2 hourly finger pricks, and his insulin pump. He also has with him a bag of emergency supplies and Hypoglycemic treatments incase he has a “low”.
Our darling bionic boy.
Image: Tadhg wearing his CGM
The fallout from your child being diagnosed with such a full on and complicated disease is huge, our entire lives changed. I had to quit my job in order to be on call for school, and visit multiple times a day for months before staff were trained. My husband moved to night shift to be able to bear some of the load during the day. The ability to allow our son out for play dates and sleepovers disappeared and many friends vanished from sight.
Our own mental health suffered and both of us had to seek professional help to deal with the impact, and how to move forward with our lives.
There is no off button, no reprieve. It’s always in the back of your mind or beeping on your phone.
It’s being up all night treating a stubborn high,
It’s a common cold resulting in a hospital admission from diabetes complications,
It’s having your child cry in your arms and begging you not to do another site change or injection,
It’s him asking why no one else has diabetes,
Its dealing with the black out rage they get from days of being too high,
It’s being called to school because there’s a kink in the pump or they’ve overdosed him.
Diabetics make an average of 180 extra decisions a day.
That is stressful.
A friend of ours asked my husband the other day what I was like before our son was diagnosed, he looked a bit sad and admitted I was far more care free. As I went to take offence, I thought about it and realised he was right.
But it is something I am working on myself on the side. It’s a big deep rabbit hole and we are in it for the long game. Self care isn’t easy and finding your fun again after a traumatic experience takes time. But I am definitely getting there.
Image: Family time at Diabetes Camp
We have had kids try and pull his pump out at school, make fun of him for having to sit out lunch to treat a low, people stare at his CGM on his arm or his pump. Parents who judge us for something that was nobody’s fault. And that’s the thing, it wasn’t anyone’s fault, we didn’t ask for it and he definitely doesn’t deserve it.
All you want is your child to be healthy and happy, all we can do is make him feel as normal as possible and surround him with friends who don’t judge and when they get older and will look out for him.
We can’t take this away from him, as much as we wish we could.
I have trained more people than I can count at daycare and school, family and friends.
Image: Checking out his new insulin pump
We both run on 5/6 hours sleep a night, sometimes less.
We have been left disappointed by a lot of people, but we have found some absolute gems in our new direction.
We have built new amazing friendships with people who just want to help and learn.
We are also very lucky to have access to a wonderful space that connects Type 1 families with each-other through meet ups and Facebook support groups.
We’ve also had a lot of support and learnt a lot from Type 1 Family Centre
They offer seminars, counselling, dieticians, functions and camps for kids to meet each other.
Ourselves, we are now more of a family unit than ever before and no one understands any of this other than us.
My husband and I often refer to Diabetes as our 3rd child, because it really is. It’s infiltrated our home and will be a part of our family forever.
We made the decision a while ago not to let it run or ruin our lives.
Is it hard? Absolutely.
We get burnt out. But at the end of the day we have the most precious, kind, beautiful boy and we are just so grateful that he is still here. We will take the burden for him as many years as we can because at the end of the day, one day it will be his.
Image: JDRF Raising money for Diabetes research
If you’d like to show your support to family’s living with Type 1 Diabetes you can so HERE
To follow Tadhg’s journey Follow here