I am in battle, and I am losing.
It is 2.15am – I don’t recall the last time I typed at 2am. Probably during finals week at University all those many moons ago, when I thought I would be able to catch up on sleep in later life.
Or maybe when the children were babies and I wrote blog posts on my phone as they lay at my breast as the world around me slept.
Again, many moons ago.
Never did I think, in my absent-minded younger days, that I would be awake fighting an eternal war, that segmented into daily battles.
I would have slept more when I had the chance.
It is a metaphor.
I am not actually fighting with sword or fist. Truth be told I am playing lets pretend…
Tonight I am pretending, badly, to be a pancreas.
I have played this game, constantly over the last six years – some days I am freaking awesome at it, I am so good at pretending that I am a human organ that I almost expect to see valves and arteries erupt on my skin. Other days, and nights, it is like I am playing for the first time and no one has explained the rules.
Tonight is that night.
It is so hard to explain to a duggle (non diabetic parent – thanks JK) what this game involves, but yet at 2am in the morning it seems imperative that the world has a little more understanding about what life is like with Type 1.
Because knowledge is power, understanding, and empathy.
I invite you to join me on a game of lets pretend, I will try to explain.
Lets pretend to be an organ….
Not the pancreas, not many know what a pancreas really is, what it looks like, and how it works. Christ knows, there are many times, I wish I was lucky enough to be clueless. Also it isn’t sexy one of the cool organs you have in your body.
So lets pretend to be a heart.
No – lets pretend to be the controller of your child’s heart.
The doctor places into your hand a beautiful red, vibrant heart.
“This is yours now”, he explains, your child’s body can no longer manage her own heart, so you must do it for her, and teach her along the way how to manage it herself.
You splutter and protest as the organ in your hand pulsates, “I did a literature degree, not medical“, you cry. The doctor smiles and walks away muttering “we do not discriminate….”
Later in the day, some well-meaning friend or family will tell you that you were given this task, this heart, because God chooses those who are strong enough to rise to the occasion.
When you have time, you will search the internet for a returns policy on God’s gifts.
The heart starts to slow in your hand, across the way, you see your daughter turn pale as the blood fails to circulate around her skin, as you are failing in being a master of her heart.
Quickly, you squeeze a few times in succession, and normality resumes, her colour heightens and she continues. No one else sees what you did, but you did it.
Every minutes of every day you squeeze the heart in a rhythm. Not too fast to make her feel like she is out running a race against Usain Bolt, not too slow that she feels like all she is capable of is a deep sleep.
If she does the same thing every day, at the same time, you are master of the heart.
Rarely does a child do the same thing every day, so instead you become ruled by the heart.
She eats fish and chips, so the pair of you work out calculations Einstein would be proud of about how the fat in the batter will gather around her heart later, slowing her blood stream, so you will have to pump harder about three hours after her digestion has kicked in. She goes out on her bike, so you pump her heart like a stress ball in Alan Sugars boardroom, hoping that you can keep up with her speed.
She comes home and you can see by the fact her face is red, her palms sweaty, and her chest thumping – that you have over exerted, pumped too hard and now need to deal with the accompanying crap feeling that will follow.
Because the sting in the tail of playing lets pretend to be a heart, is when you feck it up, you hurt her.
You will see the short-term implication, but the scary stuff, is inside is the long-term damage – what you will only see when you return to the doctor every three months for them to check on your heart management….
You send her to school. But you can’t accompany her, so instead, you hand her her own heart, and ask that in between getting an education, learning to talk to boys, playing PE, going through puberty, she also remembers to keep her blood circulating and pump her heart in accordance with her actions.
You will be rendered useless when she leaves her heart in the cafeteria, and only realises when her chest starts to strain and breathing becomes laboured.
You will be clueless when she doesn’t tell you that she argued with her friend and it caused her heart to go into overdrive, throwing the owner’s manual into disarray.
You will wait by the door, for when her heart comes home and is back in your hand, a shared responsibility.
You will kiss her goodnight, and try to squeeze the heart enough to get you both a solid eight hours sleep. You pray she doesn’t have a nightmare that will cause you to pump her heart a littler harder.
You will only see the blood on your hands when you get the calculations wrong.
When you see the Doctor you will cry, “It was not medicine I needed to know, it was a degree in mathematics I needed.”
He will smile and tell you well done for trying, and help you through the bad times.
He will remind you, that no matter how hard you try, no one can actually be an organ, we can only be our best imitation.
You will carry on.
Because there is no choice. You have to keep the heart pumping, you have to guide your child in a path to adulthood, piling more responsibility onto their shoulders than a kid should ever have to endure.
Carry on, regardless….
November is Diabetes Awareness month, a friend of mine wrote this week, that second to a cure, what we want, as parents who substitute as organs is an understanding of what kids with Type 1 live with. The multiple decisions that go into diabetic care hourly, the constant vigilance against a condition that doesn’t understand how to rest.
We are parents, we are a pancreas. They are children learning to be an organ in their body.
This is Type 1 – managing it is like running a marathon on a tightrope – every single day and night. It never sleeps.
It is not Type 2 – it is not diet related, it is an autoimmune disease.
The kids are warriors, the parents zombies.
Welcome to a glimpse of our world, please take a moment to understand.
This post was written a few years ago, and it reminds me daily of how far we have come, and how through coaching I have realised the journey doesn’t need to be as sad or as painful. Hence why I retrained as a coach, to support families on this path.
If you have a child with Type 1, I am creating a free masterclass on coping with the diagnosis, aimed at the parent. If you could spare 5 minutes to fill in my short questionnaire I will send a copy when it is done.
The link is here: Type 1 Coach (jotform.com)
Thankyou from the bottom of my heart,