This condition will make you all stronger
Here you are, four years on.
Who would have thought that it wouldn’t have gone away? Who would have thought that you would have coped? The night she was taken into hospital, you sat there in the dark evening, in the rocking chair. You had to stay home with the baby, but you didn’t know what to do with yourself. You had never been apart from her. Everything stopped then. Everything went back to square one. You had to let go of her in your heart and entrust her to the doctors as if you might never see her again. And then for months after, you thought it was a bad dream, a mis-diagnosis, a mistake.
But let’s start from the beginning. She was perfect. At her dedication, you said it from the front of the room. ‘She’s never even been to the doctors.’ Oh, the cruel irony of it, that this happy go lucky girl, never ill, would have something going so catastrophically wrong in her, that by 2 years and 9 months, her body had attacked her own insulin producing cells and she had become symptomatic of Type 1 diabetes. The silent killer, the misunderstood disease. What did you know of it then? Nothing much – a large waist measurement meant that you might have Type 2? Your grandmother had Type 2 and she had to take pills. That’s all.
But then there was this waterfall of information which came tumbling down. She will need an injection with every meal, with every snack. Her pancreas is dying. She will never get better from this.
There she was, 2 and a half, her whole life ahead of her. And all you could see was finger pricks, injections, complications, worry.
But straight away, too, this love was hollowed out from the bottom, there was more of it somehow. Nothing mattered anymore. So what if you never got any sleep again, she was alive.
At one of her first appointments, a poster was blazoned across the maternity department. ‘Breastfeeding prevents diabetes’. Seeing it felt like a punch in the face and you had to catch your breath as you walked past. She had been the best feeder out of your three children, and was breastfed until 14 months.
And then there would be the awkward conversations with people you had only just met now, who couldn’t understand the enormity of it all. A friend who asked, ‘So that’s it now, forever?’ and you nodded, thinking that when you are only 2 and a half, forever is a long time. Another friend who thought you were fussing about sugar content when offering her a doughnut. ‘Oh no’, you tried to explain, in a light-hearted way, ‘it’s just that she needs an injection for that doughnut.’ You often felt embarrassed by its awfulness and tried to explain it away. You didn’t want to foist it on other people somehow.
But this is how it is.
The well-meaning friends who would ask, ‘Are her blood sugars stable now?’ and you would look at them with a puzzled gaze. And then you would start your spiel: ‘There is no stable. Each day is a new day, each day we start from scratch. Each day a million things affect her: stress, illness, growth hormones, heat, cold, food, activity etc. There is no stable, there is no normal, there is only riding the wave.’ Not wanting to lecture, but you are tired, so tired.
And this test is so much harder than the other ones. It is so lonely, and no one knows what it is like, except for your little family, and finger pricks become normal and hypos become normal. But you can do it, and it will make you stronger, and it will make you so thankful for Banting and Best who discovered insulin, who gave life back to millions of people, for the NHS, whose care saved her life.
It will make you feel like a failure, because if she is high, you feel bad, if she is low you feel bad and whatever you do, you feel sure you could do it better.
You are tired because you need to be there for her, you need to be on the ball, you need to not drink, you need to not sleep too deeply. But what about the teenage years? What about secondary school? What about uni? It makes you scared so you don’t think about it yet. Each day at a time, you think.
You want life for her, a long life, no complications. And also you want a life that is as normal as possible, that is not burdened by wearing a pump and a Dexcom, by being watched by a helicopter mother who wants her daughter to be free, and who wants to carry the burden of this condition for as long as she can.
You think, in your darker moments, that if you had it, you’d be terrified to go to sleep. And you still dream of a cure, of a day when there is no danger, when you could just get on a plane and go somewhere and not have to worry about insulin, pharmacies, travel insurance, hospitals.
But you are doing your best, and she is flourishing. She is growing with it; she has no choice, and she is compassionate and kind and brave and strong. And she will wrestle with it for her whole life, this condition, and you will do your best and you will love her as well as you can through it all. You have come this far, and you never thought you would manage it and you will go further and you will somehow take it all in your stride. This condition will make you all stronger and make the bond of love deeper. And though there will be still be struggles, there will be much joy along the way too.