One day back in the fall, as we headed down the street on one of our evening walks, I watched you running ahead of me, dinosaur tail waggling on the costume you insisted you wore. I watched as you ran in a wobbly path past the “Hate Has No Home Here” signs and the piles of autumn leaves. I heard you giggle as you watched the squirrels leap about the trees, and I thought to myself about all the wonderful things you will be one day. I thought about how you’ve grown, from a tiny little thing into this funny, kind, happy being, who is just so perfectly…you. I snapped a photo as you ran, thinking about all the people you’ll meet and the places you’ll go, until your little head turned and you hurried me along, away from my thoughts of someday. Back to today.
It’s almost a year later, and my mind still so often drifts to that place. To what someday will look like for you now, and to what I hope your future will hold. Before all this happened, my big hopes for your someday looked like happiness, love, family and friends. Kindness, adventure, safety. Those hopes all still stand. But now there are a few more: that you will be healthy enough to live the life that you would choose, that you will be comfortable enough to afford insulin and supplies without it being a struggle, and that you will know your worth and your strength, despite the challenges you will unavoidably face.
When you were first diagnosed I would wish that we could go back in time and that it would be me that would get T1D instead of you. (Joke was on me here, because clearly whoever was listening wasn’t listening all that well, and rather than me getting it instead of you, I got it as well as you. Which was not exactly what I had in mind, but there we are.) For so many months, I grieved the life that I thought you’d lost. I cried for the little boy who will forever have a pump on his body, and for the young man who will graduate college with his Mum still compulsively checking his blood sugar like a loon. Every image I had of you in the future had to be rewritten so that you’d have a Dex on your arm, and a pump by your side. I found that really hard.
But I have finally come to terms with the idea that the childhood I dreamed you’d have can peacefully co-exist with T1D. I have always wanted your little kid days to be filled with laughter, love, and as much time as possible outdoors, and on a good day I think (or at least hope) that we are still doing a halfway decent job of giving you that life, despite the whole pancreas situ. While our days are now filled with pumps and CGMs and carb counting, they are also filled with long walks, baking, and endless hours in the sun, pretending to sail the high seas on pirate ships in search of (as yet elusive) treasure. All the things we wanted to do with you and your brother – from growing sunflowers and reading stories to visiting the mountains and paddling in lakes – we still can. We just hold those moments so much more closely now.
I’m working hard to disentangle my grief, which is still decidedly there, from the reality of your experience. I still cry over the sleepless nights – we are so painfully tired – and the site-change chases around the dinner table that leave us all feeling so worn down. But I need to remember that while these T1D moments are huge, sad parts of my day, they are fleeting parts of yours. They are normal for you – life as it has always been. They’re annoying and sometimes a little bit sad, but they’re not catastrophic. What I know now is that T1D or no T1D, your Dad and I will do everything we can to make sure that your life is filled with happiness, love, family, and friends. Kindness, adventure and safety. T1D may have taken your pancreas (and mine!), but that is all we will let it take.
The DiaBeat 