Guilt

One of the most important things I’ve come to understand since our boy’s diagnosis is that T1D is an illness of guilt. It’s an illness of “what if”s and “if only”s, of doubts and questioning. For our son, the diagnosis came almost a month to the day after a particularly bad episode of hand, foot and mouth disease. There was some speculation at the hospital that it could have been this that triggered his Diabetes to show up when it did, although no-one will ever really know for sure.

We spent many months after that feeling guilty for still sending him in when we knew there was an outbreak. We had no choice – we both had to work – but we wish we’d known what the risks entailed, however small they were. And when the time came and he was drinking and peeing non-stop, we wish we’d done something about it sooner. Noticed sooner.

And then, worst of all I suppose, is the guilt from the beginning. I opted to go back home the night our boy was diagnosed, leaving my husband in the hospital with my son – something I still feel guilty for to this day. Guilty doesn’t actually sum up how I feel because even now, I often cry thinking about it.

I remember thinking that if I went home, I could gather the things he needed so his projected four-day inpatient stay could be easier on him. Teddies, blankets, books. I remember feeling like I needed to care for the baby I was carrying as well as the baby who was outside of me – the baby who fell asleep in his father’s arms that night, and so many nights after. I remember feeling like I was breaking. But I also remember him sobbing as I left – the not one but three attempts it took for me to leave without him screaming for me so loudly I could hear him in the elevator – and I fight every day with the urge to keep apologizing to my sweet now four-year-old for leaving him when he needed me most.

It’s only recently that I’ve been able to talk about that – the idea that I failed him by leaving that night. One sweet friend told me that I’d done what I needed to do, and that I’d shown up for him, with all his new needs and complexities, every single day since. But it’s still there. The feeling that I let him down. I suspect it always will be. 

And the newest guilt. Another one I find hard to talk about, as if it’s somehow a dirty secret that I don’t want others to know.

Last September I, too, was diagnosed with T1D. Which in itself isn’t actually the worst thing that could have happened, but what sidelined me was that even more guilt came from that. Not all that many people know, yet, because I guess it’s not really that relevant, but when I have told people, one common (and honestly completely well-intentioned) response has been:

“Oh, so he has it because of you?”

The first time I heard that it cut like a knife, but only because that’s what I’d been thinking since the day I found out. It was my genetics. Me. That’s why we’re in this mess.

And this is all a bit depressing, I realize, this talk of guilt. I’m sorry for that. But what I wanted to say was that what has helped me the most, despite all the things above, is the idea that this was always going to be his life. That Diabetes, for better or for worse, was, and is, always going to be a part of who he is. He might have got it when he was 2, like he did, or 29, like I did, but it was always coming.

Any number of things could have triggered it at any time, but it was inevitable.

Just as his sparkling blue eyes, or his laugh that’s pure magic were inevitable. It’s interwoven with his soul just as it is now with ours, and as the months and years go on, I no longer think that’s a bad thing. He’s learning empathy and kindness. Patience, self-control, bravery. That life doesn’t always look like you’d hoped it would, but that you can always make the best of what you have. We’re growing, and learning. We’re tired – oh, so tired – but we’re determined, and healing, and strong.