I just wasn’t prepared for the wave of emotion that would slap me hard in the face this morning when I pressed the blue F on my phone.
It had been a normal morning, the school run was hectic, mainly because I refused to get out of bed after spending half the night changing insulin pumps and administering injections to my Type 1 daughter. After the school run I dragged myself to the gym, enjoyed every second I was there, momentarily forgetting the exhaustion. Then I drove home, decided the car was far warmer than my house, so I sat in my own drive, checking emails and catching up on the world of social media.
And then I cried.
Great big hulking tears, the type that make your back ache through exhaustion; the ones that can be exaggerated through knackeredness, but can only be motivated through pure misery.
Because a girl died.
A girl whose name I didn’t know until today.
A child who was a survivor of the Manchester Arena Terror attack, died owing to complications with Type 1 Diabetes.
My heart breaks for her family.
And is filled with fear for my own.
Because it is the ultimate terror that this ‘condition’ will one day try and steal my daughter from me; because it is relentless, ruthless, and has no respect for the rules.
The misconceptions of Type 1 are so far spread it is almost impossible to begin to start to challenge them. It is a condition that requires 24/7 management. Not monitoring, management. Currently between my eleven year old, her Dad and I, we share responsibility. One day she will take over the role of Manager 100%, no matter how hard I resist.
At 18, I started University, in my first few months, in my halls of residence, we held a Tequila night. The aim being to see how many shots you could do before, well, before you couldn’t do anymore. Just for fun.
That night, those of us who played slept by the loo, in the hallway, one on the table. We still talk about Tequila night now.
My 40 year old self is horrified, but my 18 year old self thought it was hilarious – although I have never been able to drink Tequila since.
Who checks the blood sugars of my 18 year old student daughter if she follows in my rather foolish footsteps.
Who tells her to eat when she has drank too much?
Don’t get me wrong, alcohol is only one of my fears as a Diabetic parent. What if she gets ill, puts herself to bed and tries to sleep it off, but instead falls into a diabetic induced coma.
What if the day to day responsibility of caring for something as demanding as Type 1 just overwhelms and she stops bothering.
What if she hypos in the night and doesn’t wake up.
Even as I type these words, my heart beats that little bit faster, silently verbalising my inner terrors sickens and horrifies me. It contradicts the laid back approach I try to promote to my daughter. Because inside I am anything but.
I imagine most Type 1 parents to be the same.
The line between letting them fly and wanting to hold them tightly becomes a bruised blur.
It frightens me that so many people think what my daughter lives with is something that will get easier with time. It will always factor, always be there, always be present in every decision about food, activity and sleep.
It is a dominatrix, a demon in disguise.
While the lines still blur between Type 1 and Type 2 diabetes, the confusion remains. Schools still don’t recongnise their role in caring for kids with chronic conditions, it is rare to find one at secondary age that offers the emotional and practical support needed.
This post is written in a mix of anger and tears.
This year I have read more stories than ever before of young adults and children dying from complications related to a condition that haunts our household. Today’s is more evocative as it follows a night of no sleep and numerous calculations and injections trying to fix a piece of faulty technology.
The technology that keeps my daughter alive.
Because it broke last night, and shit, that scares me too, the alarms that rang around my house at 1am were akin to those protecting the Crown Jewels. But she didn’t wake.
The bit of kit keeping her insulin flowing, and her organs working, broke.
I woke, to the sound of an air raid alarm.
She slept, as her body drained of insulin.
I fixed it, and have the bags under my eyes to prove it….
If you read this and it touches you slightly, then all is ask of you is this….
If you know a Type 1 individual, talk to them.
Ask them the signs of where you can help?
Get them to explain hypos and highs and how it makes them feel.
Don’t worry about us parents, although we will never refuse coffee.
But educate yourself about a condition that is cruel and constant.
Talk to your kids, get them to understand.
Give the Type 1 person a little bit of slack, blood sugars can rule emotions.
Share your knowledge.
Make the future somewhere a little bit safer for Type 1 kids – if that is possible.
Thanks for reading, and I am sorry, to those who have lost a child through this condition, I don’t have the words to convey my sorrow, it is heart breaking, I am just so, so, sorry for you.