It’s not fair

I can’t help myself. My mind can’t escape what I read in Christina’s blog post a few hours ago.

A third child diagnosed, none of the parents showing any evidence of carrying diabetes. I’m just sitting here, shaking my head, and wondering why – why do some families get hit once, twice, or thrice, while others don’t get hit at all? I want to tell Christina and her family how I’ve shared in her fears, and how I now share in her tears. I want them to know how – as a parent – their new reality brings about an emotion deep inside my chest that I just can’t put into words. I know diabetes is something that’s manageable, but it’s something that nobody wants to manage. Especially more than once.

But I’m not here to capitalize on her family’s streak of luck in order to earn page views on my own blog. That would be heartless and wrong.

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I am, though, going to talk about feelings, and how the sharing of one story could help another. And I’ll probably ramble a bit in the process, and diverge off-track from the message I’m trying to say. So consider yourself warned.

A few weeks ago, I wrote about TrialNet, and what the non-scientific ramifications are of participating. Never before had I heard this discussion come up, but boy have I heard it since. And the Schrödinger’s Cat philosophy, which made an appearance not once but twice in the D-Blogosphere on Monday, puts it in a whole different perspective.

These stories, and the comments that have been left in response, have helped clarify my stance on whether or not to put my kids through TrialNet. For the hour anyway, because the next hour I think something different. I waffle like a bad presidential candidate.

I also feel like a hypochondriac when it comes to my kids’ health. Especially the younger one. He prefers drinking over eating. His wet diapers are evidence that Pampers can soak up ungodly amounts of wetness without leaking (and also that “ungodly amounts” does not equal “unlimited”). He’s on the low-end of the growth charts. There’s no evidence of it, but something tells me — call it a parents’ intuition — that something might be misfiring. Or maybe he’s just a baby-turned-toddler doing what some babies-turned-toddlers do. Maybe I’m just expecting him to develop the same habits as his brother. That means the flaw is with my expectations, not his body.

Still, I’ve lost track of how many times I’ve checked his blood sugar. In fact, I checked it this afternoon. He’d been sick and throwing up, and though nothing specifically indicated it at the time, I worried about DKA. He was 90 mg/dl. (I also checked myself: 82.)

His all-time high: 129. His low, 52.

That 52 mg/dl was early morning, probably three or four weeks ago, when he just didn’t “seem right”. His diaper was soaked and he was thirsty. I expected a high number, but the low one didn’t make me feel any better.  I hypothesized (to quote Christina’s words in her blog)  that maybe “his pancreas is in such disregulation that it doesn’t know what the fuck it’s doing”.

Or maybe 52 is OK for a fasting BG for an 18-month-old. I don’t know. I never asked the question of anyone because, I suppose, I don’t want to know. I’m afraid of the answer. But I do know of people diagnosed at 18 months, so it is possible.

And in writing the above sentence, I think I realized why I haven’t done TrialNet. I don’t want to know.

So I go through, day by day, assuming that it’s going to happen and it’s a matter of time. It’s that unscientific intuition I talked about. I suppose, if I keep going on like this, I’ll convince myself more and more that it’s inevitable, and at that point TrialNet could only help, not hurt. It could ease my fears or it could validate them. Validating them probably wouldn’t make me think any differently than I do anyway.

* * *

Getting back on track, it’s just not fair that diabetes tends to strike how it does. Not that a different way would be any different.

My parents had two kids, two and a half years apart. Neither of us are “normal”. My brother has Angelman Syndrome, I have Type 1 Diabetes. Lightning did strike our family twice, only in our case the bolts came from different clouds. I find it amazing how my parents managed all this time. If I had to choose between AS and T1D, I’d say Angelman is the harder of the two to manage, partly because my brother will never grow to be able to handle it himself. But AS has certainly helped to put things like T1D in perspective, and the two together have forced a certain discipline and responsibility on all of us that would not have been so strong otherwise.

There’s a silver lining if you look for it. Clustering the PWDs in the family makes sense from the broader perspective. It’s better to have a newly-diagnosed T1D child be cared for by a parent who already knows the ropes than by one who needs to learn them. Of course, that’s no condolence for said parent.

* * *

People often write about the “emotional side” of diabetes. I suppose I am fortunate that I don’t get too emotional about mine. Yeah, something happened over the weekend, overnight, on vacation that made my BG shoot up high and made my ketone strips turn purple. And yeah, I dropped my only “rescue syringe”, uncapped, on the disgusting bathroom floor causing the needle to bend (I used it anyway). I changed out the set, gave myself a healthy dose of Novolog by bent-syringe, and went back to bed. A frustrating pain-in-the-ass, you bet. But I dealt with it at 3 am and didn’t let it ruin my day.

“They are the biggest treasure I have in this world”

But if you want to see me get emotional, just talk about my kids. They are the biggest treasure I have in this world, and  just thinking about what words I’ll type next are making my eyes water. (Excuse me while I go grab a tissue). Lately, I’ve been reading more and more parent-of-CWD blogs, and I think my venture into parenthood could be the reason why. More and more, I can see why parents of kids with diabetes are becoming real advocates and activists for diabetes rights and diabetes research. You don’t mess with someone’s kids and get away with it. Even God gets an earful of colorful language every time a child is diagnosed.

Image source: Duke University Libraries

I’ve never considered myself a diabetes advocate. Sure, I have this little blog, I walk for JDRF every year, and I click buttons that automatically email my elected officials about various issues. But I don’t really make an effort. You don’t see me perched atop the Washington Monument demanding consistency at airport security checkpoints.

But if you mess with my kids, diabetes, you bet your Life Savers that I’ll be making some noise. In school, in Trenton, and in Washington. (Did you know that Life Savers were the #1 way to treat a low when I was diagnosed?)

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I told you that this post would meander all over the place. I’m not sure if I said what I set out to say, but I had to say something. We just take what life gives us, and do the best we can. It’s all we can do.