Type 1 Diabetes – This time it is personal.

Many years ago when less wrinkles lined my face and my third child had not even been imagined, I gave birth to twins.

In the early days of being a mother, before I started to comprehend the true magnificence and magnitude of being a parent, I would lie upon my bed with my husband and we would gaze in amazement at the two beings we had created, who were gurgling and punching empty air sockets, unaware of how very adored they were.

It was on one of these occasions that my husband turned to be with a look of simple fear on his face and whispered, ‘good lord, which child will we see bleed first.’

The idea was abhorrent, that a child of our could fall and tear their perfect baby skin seemed akin to a horror show.

But of course they did.

And of course, we found as parents that skinned knees and torn palms fix up easily with a chocolate bourbon and a kiss from mummy.

However, those words stay with me, more so this year than ever before.  In fact, they haunt me each time I ask my eldest daughter, my type 1 warrior to take a pin and make herself bleed.

At least five times a day.

When we lay on that bed, so many years before, scabbed knees and bumped heads were the topics of bad dreams.

We never imagined living with a chronic, incurable, blood driven condition.

Last year I didn’t really know what diabetes was, like so many I thought type 1 and type 2 were intertwined, mirror images of each other.  I didn’t know the difference in a child sufferer to an adult.  I didn’t understand the lengths a parent would need to go to help manage, control and protect their baby from this disease.

I am not asking for pity, but just for a moment, I am asking you to read, to understand a little more about this condition, because knowledge is power, the more of you that understand, the more help we have in searching for a cure.

This is diabetes for a child.

Until growing stops, hormones settle, and puberty releases its grip on my child, her diabetes will remain unpredictable, changeable and hard to manage.  It will go with her to every party, to every sleepover, it will be there when she has her first period and when she kisses for the first time. It will lurk when she drinks alcohol, it will taunt her when she drives a car.

It will be her constant companion, and it is my job, as her mother, to make her and her diabetes be friends.

So this is how it works.

For a child with type 1 diabetes who is controlled by injections, each day starts by preparing to keep her blood sugar levels between 4 and 8.  Ideally, we do this in a way that involves her but in no way dominates her.  Living with diabetes is tough enough without having to think about it every living second.

We use a finger pricker to taker her blood sugar readings, so when she wakes up we prick her finger, squeeze it to make her bleed and then dip the blood in a test strip which then cleverly takes a reading that displays on a handheld meter.

Like her injections, she does these tests herself.

As a parent of a child with type 1, my aim is to teach her awareness, management and how to achieve all her dreams.  Please don’t ever tell my child she can’t have or do something, because god help me, I will find a way so she can do everything.

So how do we keep a child with diabetes between 4 – 8?

Insulin and food.

Type 1 kids can eat pretty much anything they like.  You can offer them sweets, don’t be offended if they pocket them for later, they are an ideal child they will save them for after lunch.  They can eat chocolate, dairy milk is our current favourite, and they despise that nasty diabetic imitation stuff – try it and you will quickly see why.

What happens if she is below 4?

She is hypo, she knows what to do.  She eats 3 haribos (10grams of fast acting sugar), sits for a while, re tests and eats a biscuit to balance her out.
She tells me it feels like the world is turning too fast, like her legs have been stolen from under her, like she is on a roundabout shouting to get off.

We try and avoid hypos.  They sound like nasty little feckers.

Hypos are scary, watching your child dissolve a little before your eyes can be terrifying.  When you put them to sleep at night the fear that they will hypo and not wake up (very rare) is all consuming.  As rare as it is, it is the reason we set an alarm for 2am, why we make her bleed once again.

And over 8?

She is hyper – literally.
But over 8 means she is tired and thirsty. She needs to wee all the time, her brain doesn’t work properly, concentrating in lessons is twice as hard, her emotions are volatile, as a parent I can tell you when she is high, she can be unintentionally horrible.  The higher she is, the worse she will feel. When she is over 20 it is like living with a pre menstrual teenager who has just found out One Direction are splitting up.

Hypers are cruel, a punishment for something we didn’t do wrong.  We don’t run our child high, but hormones, emotions, nerves and fears can drive her blood sugar readings high into the 20’s.

They make her ill, and continued high blood sugars cause complications in later years.  When I fight high blood sugars now, I am fighting for her future as well as her mood for tomorrow.

We follow the rules, diabetes is a cheat, he is like a playful toddler who knows how he should behave but ignores us all the same.

We test her blood nightly at 10pm, she is often as high as a kite; it has been this way for nine months.  Her diabetes seems to be a night owl.   We treat with more insulin and toss and turn until two hours have passed, then we test again and hope to see single digits flash up on our meter.  Then we toss and turn some more until 2am ticks around and we make sure that single digit has not fallen too low.  That our child is not fitting, or has dropped so far that she has fallen unconscious.

When you have a child with diabetes, sleep is really for the weak.

If we don’t get it right for my child now, if we don’t educate schools, brownie groups, swimming teachers, friends, relatives, then she faces a host of complications when my girl becomes a grown up.

Diabetes can kill if you don’t take it seriously.

If you care for my child, all you need to know is she knows exactly what to do (she is a smart little cookie).  She won’t eat salad, but will go mad for your cheese.  I need to know what she is having for tea so she can inject the right insulin. Type 1 diabetes is controlled by carbohydrate counting.  you add up the volume of carbs in her meal and then she puts that figure into a terribly clever hand held device and it tells her how much insulin to inject.

My years of point counting at Weightwatchers prepared me well for carb counting.

You can watch her inject if you like, maybe ask her first, she will astound you with its normality.

If she does have a hypo, again she knows what to do, and if the extreme happens (it hasn’t yet, as I said she is a smart little cookie) and she falls unconscious please don’t try and feed her.  It is hard to digest when you have passed out on the floor.  Ring an ambulance, ring me, and I will pop by when it is all over with a large bottle of gin.

(To stress at this point – it is very rare to pass out from hypoglycaemia.)

If you have her to sleepover, don’t worry, you don’t need to wake up at 2am, but I may need a quick call from her at 10pm – she won’t be asleep she will be far too over excited!

There is a light on the horizon.  When puberty ends, control becomes easier, a child with diabetes will have faced and conquered the worse of the condition.

There is talk of cures, of an artificial pancreas, engineered cells and transplants.

Again knowledge is power, the more everyone knows, perhaps the more everyone will help in trying to cure this disease.

I want to help make a life where no child has to make themselves bleed before they reach for a sandwich.  To create a world where my daughter doesn’t have fingers marked with holes and a backside that is bruised from injections.

I spoke to my warrior girl last week, I asked her what diabetes was like, and asked if ten months later had got any easier.

She told me, it was fine, she can cope with the disease, but still injecting everyday is the hardest thing to do. Taking her blood sugars was annoying and having high sugars felt awful.

Then she asked me what was the hardest thing I had ever done.

I thought long and hard and then replied that training for a marathon was incredibly hard work.

She laughed and reminded me that I had done three in my time.

I joined her chuckles and said each one was harder than before.  That because I knew how much work went into it, and how much training and motivation was needed and my fear was higher each time.

She then asked me to run one for her, for diabetes, to raise money for a cure, to make others more aware of the nature of the condition.

I looked at my feet, which hadn’t ran in two years.  I looked at my size 16 belly, poking out over my jeans, a good three stone heavier than when I last ran 26 miles.  I remembered crying last time I ran a marathon at mile 22, and swearing to never run one again.  I recalled with venom how much I loathe running.

I looked at my kid, pricking her finger, gently easing a needle into her thigh.

I answered yes.

On April 6th, I will be running 26.2 miles through the streets of Brighton to raise money for Diabetes UK.

Help me spread awareness of life with type 1, help me raise money to find a cure and support other kids like Molly.

If you can sponsor me, please click the link here.  If you can help me raise awareness please share this post.

Thank you.