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On Kids with Type 1, and How I Yearn to Help

January 12, 2011

A serendipitous encounter occured last week on my flight home from Austin, after a blissful 6-day vacay in the beautiful Texan capital. On the second leg of my route, I shuffled my way towards my comfortable window-seat, only to discover that someone else was sitting there. A very kind gentleman was seated with his son, and asked if I could switch seats with him so he could be with his kid. Naturally, I agreed, although I wasn’t thrilled about trading my window for a middle-seat squished between two broad-shouldered ladies.

Turns out though, there was a reason for this. As I got to chatting with the broad-shouldered lady to my left, it came out that her 11-year-old great-grandson (she has a great-grandson at age 70!) was diagnosed with type 1 just two months ago.

She told me story after story of how that family is struggling. The parents are terrified, and the kid’s overwhelmed. What’s really challenging all of them the most is that he’s been sneaking “forbidden” foods lately, and his sugars have consequently been riding so high that the doctors may be forced to call Child Protection. “I cried and cried when they told me,” she said, of his recent diagnosis.

I was genuinely affected by this woman’s stories. I can only imagine how terrifying it must be to get diagnosed as a kid. As an adult, I actually appreciate how macrocosmically this disease forces me to think about my body. I approach diabetes-management as a meditation in holistic self-awareness. Finely calculating the various factors in my metabolic equation feels like an act of self-love. Giving my multiple shots a day is part of what I do to live well.

How the hell a kid is supposed to handle this on his own is beyond me. Which is why the task usually falls to the parents to fuss and fret, calculate, test and inject, leaving the kid with little other way to yield his own power than to rebel. Can we be surprised that this poor kid is sneaking forbidden foods at night? The one positive thing I can say about this disease – that it is PATIENT-EMPOWERING – is lost on a kid who’s too young to manage it himself.

I feel a growing sense of kinship with diabetic kids. They kinda feel like my “lost tribe” or something. I easily could have been one of them, but thankfully was spared the perils of life with diabetes until close to my 27th birthday. As I read more blogs of caregivers and adult diabetics recounting childhood tales, my need to reach out to these kids and help them however I can deepens.

So it was without hesitation that I gave this woman my email address and phone number, and encouraged her to put me in touch with her Ohio-based family. I would be really happy to talk to him, as someone who is also getting used to this new way of life, and maybe provide an impartial listening ear. And she agreed, it would be really beneficial for him to speak to someone who’s not involved – because it sounds like rebellion is the real culprit they’re having to deal with right now. I do hope they get in touch. I would truly love to help.

After that plane ride, I felt a surging desire to be a diabetic mentor, however I can. It has prompted me to research volunteer opportunities at various diabetes camps, and even had me thinking for a bit about setting up a mentorship program at some diabetes clinic (an brainchild which, while I’d love to develop it in the future, will have to take a backseat for the months to come while I prioritize other important projects and pursuits).

My kinship towards that lost-tribe is strong. We carry many identities, many selves – I am Sarah the writer, Sarah the traveler, Sarah the neurotic Jew, Sarah the spiritual healer. Sarah the musician, Sarah the artsy-hipster-gal, Sarah the seeker, Sarah the runner, Sarah the lover. I am also, and very much so these days, Sarah the diabetic. As I find a place for that new self – not TOO big of a place, but a place nonetheless – I cannot help take on all the histories, the selves, the lives and heartaches of the millions of other diabetics who’ve come before me and who live today. My heart bursts for my lost-tribe. Finding a way to connect with diabetic kids – I know that’s a next step on my journey with type 1.

running with diabetes in Austin

And here's Sarah the Runner, upon finishing an 11k-loop around Austin's Town Lake on New Year's Day.

3 Comments leave one →
  1. January 12, 2011 1:18 pm

    So I just edited out a million typos that I’d completely missed when I posted this – things like “occccured” and “ageed” – because, lo and behold, my blood sugar was riding at a soaring 15.1 as a typed this, and I consequently was a little loopy. Nothing of course that a little 5k jog on the slippery sidewalks won’t fix. Post-run and showered, I’m now safely down to a comfy 7.1
    Never a dull moment in the life of a diabetic blogger! Apologies for any typos I may still have missed. Blame my damn blood.

  2. January 12, 2011 1:33 pm

    I’m a Type 1 neurotic Jew too! I’m twice your age and I sometimes sneak foods at night too! Then again, I do have the insulin to cover.

    How a kid is supposed to manage is also beyond me, but many kids do, and there must be a secret to be shared with the rebellious kids. Wish I knew what it was!

    How do you tell a kid like that they’ll be sorry later? They don’t care. Kids live in the moment.

    I think part of the answer is to allow the kid to have all foods (why the restriction in the first place?) and to teach him how to have the insulin to cover it. That’s only part of the picture of rebelliousness, but surely a start. Why should Type 1s kids have food restrictions, especially if they rebel, if there’s insulin to cover it? Isn’t that the crux?


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