Tag Archives: JDRF

Join the Robbie Alliance!

Since I am, by my genes and by long habit, a worst-case scenario thinker, I have spent a fair bit of my child’s life (beginning when he was still in my belly) worrying  about every little thing that could go wrong.

I am trying to do less of this, this refusal to enjoy what’s going well TOO much.

Brené Brown calls it “foreboding joy” and explains it this way: “We’re trying to beat vulnerability to the punch. We don’t want to be blindsided by hurt. We don’t want to be caught off-guard, so we literally practice being devastated.”

At some point in my pregnancy, I stopped looking at the scary chapters in What to Expect. I was pregnant, after all, after finally accepting that I would not ever get pregnant, and I wanted to enjoy it.  And I did.

However, the revving up of the school year revs up a particular anxiety for me–how to help my son navigate a world that seems full of peas, peanuts,tree nuts, eggs, dairy products and sesame, all of which he is allergic to, in varying degrees.

All in all, it’ll be fine. I’m meeting with the school nurse tomorrow. I’m checking to make sure his epi pens are not expired. I may write a letter to parents of kids in his class. For me, this has to go in the category of Bad Things That Could Happen to my Kid Which I Need to Prepare for and Then Forget About.

I’m not blase about it, but it doesn’t fill my thoughts every day, so in the realm of Bad Things That Could Happen, it has way less suckitude than other things.  I need to stop reminding myself how scary he looked the one time he went into anaphylactic shock. I have to remember to take epi pens with us, and I have to read and re-read labels, but it isn’t constant vigilance.

My friends Beth and Mat, however much they are able to be joyful (and they are, actually, a VERY joyful family, way better at it than my own family), do have to practice constant vigilance because their son Robbie, the same age as my son, has Juvenile Diabetes. Here’s what Beth had to say about it today on Facebook:

I’ve been trying to limit my type 1 diabetes-related posts so that you all don’t get tired of hearing me talk about it. But know that T1D never gets tired of imposing itself on our lives. Every day we take it on and it affects everyone in the family, though obviously Robbie most of all. Just last night we had ice cream before bed and a bit later R’s blood sugar was super high. We went to sleep thinking that maybe the insulin was slow taking effect since we treated him afterwards. Then an hour or so later I woke up with a jolt and realized we’d never actually treated him. We gave him his insulin, but he continued to be high the rest of the night. I invite you to pick a day and pick a child (or yourself) and imagine having to account for every bite of food that enters the body. Imagine trying to calculate how exercise affects the blood sugar – running around a lot? Less than usual? Going swimming? Imagine calculating how excitement or nerves impacts the blood sugar level too. Imagine watching your child as he lives his life, always wondering in the back of your mind if he’s going low, risking a seizure or going high and risking all the scary long term complications. Every day is a new battle. We hang tough and the terrain grows familiar, but we pray for a cure daily. That’s why we support JDRF.

What a life motto: “we hang tough and the terrain grows familiar, but we pray for a cure daily.”

That’s so different from my worst-case-scenario worry-wart-ism. It’s almost its opposite. It’s dealing with reality and still figuring out how to enjoy ice cream when you can.

Look at their amazing boys–

Great kids! That's Robbie on the left, with the peace shirt.

Great kids! That’s Robbie on the left, with the peace shirt.

We don’t get to see this great family much any more, but in honor of how awesome they are, and what a great cause this is, I’ve contributed to the Juvenile Diabetes Research Foundation.

You can contribute to, through the Robbie Alliance. I know we can’t all say yes to all the good causes we’d like to contribute to, but I hope you can help this organization, this family, and this really terrific kid.

And also, they have a terrific logo:

robbiealliance

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This post is partially a thank you and a perk from my Indiegogo campaign, which I called “a shout out on my blog.”

I like to think it would have occurred to me to promote this very good cause even if Beth hadn’t contributed to my fundraiser, but it didn’t occur to me last year, even when I made a contribution to the JDRF. I am so slow sometimes….