Thursday, April 11, 2013

Everybody Needs Diabuddies!

It came to our attention pretty early that Eleanor's stuffed animals had all been diagnosed with diabetes at the same time she was! We were shocked! There must have been a trigger virus that swept through the plushie kingdom.  Her room has turned into a diabetes-managerie-clinic.  Many evenings, they all get lined up and have their blood glucose checked and are administered their insulin all in a row.  It's really been a wonderful way for her to feel like she is not alone.  I recorded this video of her on March 22, only twelve days after her diagnosis. Knowing how time passes differently in childhood, I imagine that those 12 days feel much longer to her than they do to me.  She seems so at ease.

Eleanor hugs her first "Diabuddy" Tasha
Dallas Children's Medical Center
In addition to her little animal friends, we have been able to contact a seven-year-old girl, with whom Eleanor has been exchanging emails.  I can tell that Eleanor responded immediately to the relationship. She lit up when I suggested the correspondence, and then reminded me often until I got the contact information so she could write to her.  Even though Michael has diabetes, knowing another girl her age with type one diabetes "just like her" is a comforting connection.  She calls Caroline her "diabuddy" and she's looking forward to meeting other diabuddies too.  I will work on finding her some local friends.  I understand the JDRF has family gatherings, picnics, and so forth. What a wonderful way to connect with other T1 families. 

Eleanor learned the term "Diabuddy" from Diabetic Danica We first found her YouTube channel when looking for videos of people who use the Dexcom G4 Continuous Glucose Monitor, or CGM, but we fell in love when we watched her diabetes parody of "Call Me Maybe."
Eleanor has already, once or twice, expressed some self consciousness about getting insulin injections, or doing BG checks in public.  On the other hand, she invited her friends to come watch her go through her pre-lunch routine during a play date.  I think she'd like for her friends to see it as normal as possible.  Perhaps the more open we are about it, the less weird she will feel.  I think kids adapt to atypical circumstances much more quickly than adults do.  Michael says it's because they've had such short lives that everything is new and novel anyway.  I'm sure time and repeat exposure will normalize it for her friends, and for her.  (And for me, and the other parents!)

The clinic at Dallas Children's has offered to do a kid-friendly education class at her school classroom.  Since she doesn't attend school, I am hoping I can arrange a similar program, to which we can invite our homeschool group. I'd like to schedule it in the late afternoon, so Eleanor's friends from dance class, and Daisy Scouts who attend school can join us as well.  Already, in the 32 days since diagnosis, I have discovered just how little knowledge most folks have about diabetes.  I've come to understand that there's a fair amount of unpleasant emotions, even resentment among type 1 families, because there is such a glut of information about the far more common Type 2.  The uninitiated, all too often jump to conclusions that just aren't accurate.  I don't fault anybody! But I haven't had a chance to grow weary of it yet, whereas many of the other moms who've been at this for years, really have.  Even with Michael having diabetes I didn't know as much before Eleanor's diagnosis as I do now. But…that's a can of worms for a-whole-nuther post!  If we can offer an education opportunity to a few of our pals, we can make a small difference in the knowledge base; answer questions the kids are asking anyway; Eleanor will feel less conspicuous; and everyone will learn. Everyone wins! YaY!

Eleanor showed these friends her lunchtime routine.

During the Sunday Matinee last weeekend, I needed to do a quick BG test back stage while the children in the cast were all lined up waiting to go on stage.  Many of them started asking questions.  Some of them assumed she had gotten hurt, because they only looked in time to see me squeezing blood from her finger.  Of course we were backstage and we needed to be quiet, which meant we couldn't answer their questions without being disruptive.  I did whisper in one very young boy's ear, "I will explain it to you later, but we need to be quiet right now."  The experience convinced me that it would be helpful, especially with children she's friends with, to do a pre-emptive  mini-lesson.  Head off those questions at the pass before a small person becomes alarmed.

For now her email connection and stuffed animals can help, but I'm sure that over time, she'll collect plenty of real life diabuddies with whom she can compare notes and be in the "same boat." I want that for her, because everybody needs diabuddies! 

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