By Simon Vinnicombe
My wife, Tracy, and I, share duties for George’s care. We both work. And we both attack the nights as equally as we can. We’re up about five times a night on average. George is very insulin sensitive. We give him jelly babies to treat hypos in the night. I have given him half a jelly baby (1.5carbs) and that has been enough to take him from a hypo (3.6) to as much as (12.1). Balancing his levels is a real fight. And one which you never feel like you win. When George’s blood sugar levels are out of control (growth spurts, heat, cold, failed sets) the feeling of failing him is crushing. Tracy is his Mum, his chief protector, his number one carer. She goes to war for him every day. As all type 1 mums do for their kids. And she does it in silence. The only people who really ‘know’ just how demanding this condition is, are the other mums with type 1 kids.
Our dear friend, and fellow type 1 mum Elle Dormer, has been fighting for over a year to have her son’s care guaranteed at school. At first she was helpfully told that she ‘might want to find another school for her son’. Despite the fact that his brother was already in attendance. It’s completely earth shattering to be told that someone might not ‘want’ your child. Let alone be told that they have no interest in caring for them. The school have changed their attitude (largely due to the fierce determination and persistence of Elle and her husband James) but now they are faced with a battle against the council to ensure their boy is looked after. Elle is an awesome woman in every aspect. Bright, articulate, compassionate, very intelligent and determined, yet even she is pushed to the very limits by the fight that comes with having a type 1 child.
I have enjoyed spending time with Elle. I find an odd reassurance in seeing someone else constantly hover over their phone, knowing that nursery could call at any moment. She told me that she is incapable of going twenty minutes without thinking of what her son’s blood sugar level is. She doesn’t sleep. She worries about the future all the time. She worries that her child will never get the freedom of existence that is every child’s right. She is just like my wife.
I thought that things might get easier as our son grew. My wife told me of Miles (a friend’s daughter) whose teenage hormones sent his numbers terrifyingly high and hospitalised him. The only way to get control was to put him on a permanent drip. I’ve met Miles. A charming, wonderfully well adjusted, smart young boy. He’s wonderful with my son. To think of him going through that had me in floods of tears. And then I started to think of George, and all that awaits him. Little kids have been gorgeous with him so far. They know no social etiquette. They ask him what he is wearing round his waist. ‘My pumper’ he replies – with a smile. They watch as he is injected. And ask about the blood. And then they go and pretend to inject their teddy bears. Beautiful. But I do worry about the older kids and the teenagers and the…etc. etc. These are conversations I have with my wife often. She is always thinking of the long term and the short term with George. He is part of her. Always will be. Her love is the most natural, most powerful love that exists in this world. A mother’s love.
My respect for type 1 mums is impossible to articulate. I’m not sure a blog is ever going to achieve it. But I do want to bow down in respect. To celebrate them a little too. If my website does anything, I hope it puts across just a semblance of what it is like to care for a type 1 child.
Please spread the word as far and wide as you can. In truth, I know I will be able to run two marathons. It will hurt. A lot. But I will get through it. The third marathon is going way beyond my limits. It will break me. But the idea of giving up is laughable. George didn’t. His Mum never will. No type 1 mum would. Respect and love to you all.
On 13 November, the eve of World Diabetes Day, Simon Vinnicombe will be running 78.6 miles, or three back to back marathons, one for every year since his son’s diagnosis with type 1. The website, with interviews and a video diary of George is at www.runfortype1.org