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.

***

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.

KidsAtHockey

“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

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?)

* * *

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.

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Posted on June 25, 2013, in Diabetes, Personal and tagged , . Bookmark the permalink. 9 Comments.

  1. You said it, and we can empathize 🙂 I know I felt the universe gave me the big middle finger at age 21 when I was diagnosed, but thinking about all the kids who get it (and the weight of dealing with it as a parent of a CWD) makes my heart tremble. The worry, the helplessness, the not-knowing…all valid and terrifying emotions. I would certainly love a cure for diabetes for me. But I would especially love the cure to happen for all the kids who have it, and for their parents’ peace of mind.

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  2. When I had my kids, I was still peeing on a stick. Even when I started using a meter, it never dawned on me once to check my kids. That was the advantage/disadvantage on not having the Internet. Of course I knew my children were safe. Why? Because my sister and I had Type 1 and not my brother. I had two sons and therefore they were safe. What a crock! But they are in their 30’s now with no sign of Type 1. So it looks as though my naïveté might have worked.

    You’re worried about this son and have posted about this more than once. I think that you should do Trialnet. If he tests negative for all of the markers, maybe you’ll relax and be comfortable that Type 1 is not knocking at the door. If he’s positive, then you’ll know to stay ever vigilant. Either way, you are participating in research that might have a role in the eventual cure of Type 1.

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    • Trust me, those thoughts have all gone through my mind already. But my suspicions may be nothing more than unsubstantiated paranoia. If I didn’t go around reading blogs written by parents of kids with diabetes, maybe I wouldn’t be so concerned. And then, as you said, if I’m on both sides of the fence, maybe the contribution to medical research should cast the the deciding vote.

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  3. Hi – type 1 farther of two from the UK, really enjoy your blog and sense of humour. My children are taking part in Trial Net testing – thought about if for a long while before signing up for exactly the reasons you have so wonderfully stated but really glad we went for it. So far each of the 3 years has come back clear and it really is a weight off. Of course, this may not always be the case but I think the warning for potential diagnosis in the future will help to overcome the worry and allow us to be extra vigilant. Thanks again for the blog Scott, good to know there are lots of us out there.

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    • Thanks for the comment and for reading the blog, Marc. Sure, a “no antibodies” result sure could be a weight off. But the opposite could happen too. I hope your kids always test “clear”.

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  4. Beautifully written post. Love can create such anguish.

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  5. oh dear Scott. My heart is aching for you. I guess reading the blogs of parents with cwd might kind of be like a train wreck – you don’t want to look but still do. The good news is so many of the parents of cwd blogs highlight all the awesomeness (kids surprise the hell outa us – Meri said so and she is always right) as much as the whatthefuckedness.
    As far as TrialNet – Im still a proponent for it. I still believe in it. Without it I wouldn’t know that Chad and I are antibody free (not that that lets us out of the woods for developing Type 2 or even other types). Still it helps knowing. Also – I would be (and was) worrying long before TrialNet. I checked middles sugars before he was ever screened. Being part of TrialNet has allowed us to catch it (I mean we haven’t had the confirmatory OGTT yet – but Im a realist) so early that we will likely be able to extend his honeymoon for a very long time – (maybe even years by just giving his pancreas a break with one shot of Lantus a day) that means helping his pancreas maintain some insulin production for much longer than it would if we weren’t watching.
    We knew my daughter was positive with antibodies for two years prior to her diagnosis. I have not stopped kicking myself for not continuing with TrialNet to monitor her. We would have seen it before it progressed far enough to require long lasting and fast acting insulin at diagnosis. Still I can’t emphasize how it is a very personal family decision. Yes there is great research being done via TrialNet and for some that aspect is enough to move them to participate. But even TrialNet doesn’t want to push a family into studies if it would cause stress to the family (at least every TrialNet employee Ive ever met has the entire families best interest at heart).
    Thanks for the shout-out. Sorry it took me so long to see it. Im catching up on my blog reading.
    Hugs for you always – you and your beautiful family.
    Your boys are certainly blessed to have you for a father.

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    • Please don’t feel bad for me. So far, the only thing that really troubles me is my own heightened awareness (and my own diabetes, if we’re being honest) and I suppose that’s better than not being aware at all. But I do have to thank you for telling your story with such honesty. I can read your comment over and over and each time get something new and encouraging out of it.

      It’s why I read the Parent-of-CWD blogs in the first place. Not to witness a train-wreck, but to marvel at the differences and advancements we’ve made the last three years. Also, it’s just where I am in life, I feel I can relate more to those who feel a boundless commitment to their kids: I’m a parent and the family is affected by diabetes. The roles are a little different but the stories are the same. We learn from each other.

      Thanks for your very thoughtful and insightful response.

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