“Tomorrow is always fresh with no mistakes in it.” Anne of Green Gables.
When I first read about the Diabetes Blog Week, I thought it just wasn’t the thing for me. In theory it sounded great. An opportunity to engage other writers for a week on a similar topic, sharing in different perspectives, stories, and experiences. But I worried about the time and creative commitment, about the topics and whether or not I had anything worthy to contribute. But mostly I worried — and this will sound strange — of opening myself fully to this community.
I know, I write a blog. I put myself out there every time I post something. You can’t get much more open than that. But as I’ve written before, like many of you, I don’t write it for others… well maybe I do some occasionally now, but it didn’t start that way. It began as a way for me to personally come to terms with my daughter’s diagnosis. The fears, the raw emotion, the anxieties that greeted us every day, those were my audience. My goal then and still today is to root those devils out, expose them in their deepest, darkest hiding places and in making them public learn to live in plain sight of them.
For me, to achieve that must take, in part, a better understanding of myself through the words that I write. But I am reminded, often in my writing, that I am not the one with diabetes, Lia is, and to be honest gaining an understanding of what that must be like for her takes so much more and is so much bigger than just sitting down to a keyboard or a computer screen. It takes walking in her shoes, something I and everyone else is incapable of doing; so there are times when I finish with what I have to say and I realize I have no better understanding for what I think about it than when I began. They’re just words on the page, my blabbering on about this or that, knowing full well that buried amongst the squiggles and straight lines is the deeply unsatisfying truth that this is not nor has it ever been my burden to carry.
I wish that it was. Everyday, I wish that it was.
Bad things happen to good people. We know that. It’s been that way forever. The hardest thing for a parent to accept is not that it happened but that we cannot take it away from our children. We can read of how others have learned to deal with diabetes, how young people have grown up and learned to live full, long lives; how they traveled, married, had children of their own. We can read books, watch documentaries, participate in other ways of communicating the same message: life with diabetes is hard, but not impossible.
We can do these things and are lives are better for it, but that shared experience only partially eases our worry, because there are other stories as well, some that aren’t being told because no one could stand up to the telling of them, and that’s all good and well. But it is in these moments of gloomy despair, when we feel most vulnerable to the frustration, confusion and uncertainty of fighting this disease, that we need a helping hand; it’s then that we realize, ultimately, that we just simply cannot do this alone.
With that in mind — and finally to theme of this blog day (sometimes discovering what you think takes a strangely circuitous route) — I’d like to share that my inspiration of late comes from someone who doesn’t even write a blog. To my knowledge this parent of a CWD doesn’t write at all. They do read plenty of d-blogs, however, (in fact that is how we first met) and most importantly, they are as involved in their own child’s health and well-being as are Franca and I. To our benefit, they have been with diabetes a good bit longer than we have and are willing to share their insight, knowledge and personal experience with what it has been like for them rooting out their own marauding demons.
It’s not just us, but Lia, too, who has benefited. She had the chance a couple of months ago to spend some time with their child. This little girl, we’ll call her R, is the same age, in the same grade, and has the same good-natured qualities as Lia. The two spent the day together and it seemed on the surface like any normal play date between kids. They ran around, they jumped on the trampoline, and other than testing together, seemed not to pay their diabetes any attention. But that evening after R went home, Franca and I went to bed forever grateful for having found someone else with whom Lia could relate to on this important level. Unbeknownst to us, however, Lia had been soaking up much more than a new friendship. The next morning when she came downstairs to where we were sitting, she announced to us her BG, how many carbs she was eating for breakfast and how much insulin she had bolused.
This was surprising in that it was the first time she had ever taken such charge of her diabetes and in all honestly it was a degree of intellectual involvement that Franca and I both knew was important for Lia to reach, but after only six months on the pump and just over a year of having diabetes, was something that neither of us were ready to ask of her ourselves. We — I, especially — was still stuck in the theory that diabetes might be her burden, but it was mine to carry. Lia, it turns out, disagreed and she didn’t need one of us to ask this ownership of her, she only needed to spend time with a little friend, who showed that life with diabetes can not only be normal but also extraordinarily special and confidence-building, and that is a lesson, my friends, that I would not trade the world for.