Writing the Letter

We've participated in a JDRF Walk every fall since my daughter was diagnosed.  It's an annual challenge to pen a brief and compelling letter, unique from the ones of years past, in which I explain why diabetes is awful and why donating to JDRF is, in our opinion, a helpful response.  Here's this year's letter, without the opening paragraph with the walk day details, and with the name of our stuffed bear with diabetes substituted for my daughter's own name:

About a mile into our second walk to cure diabetes, Ruby, who was about to turn 3 years old, turned around in her stroller, looked me in the eye, and said,

“Why are we doing this, anyway?” 

“To raise money for people to learn about diabetes and hopefully find a way to make it easier to live with it. Or even to fix it.”

“Oh…okay.”

That’s why we’re still doing this.  And we’re encouraged. 

JDRF is funding research for biological and technological advances which show true promise.  The updates have been coming thicker and faster over the past couple of years, with encouraging progress on a variety of fronts.  Most promising, in our opinion, is the possibility that a ‘bionic pancreas’ system which would regulate Ruby’s blood sugar with little input needed from her, will be available before she graduates from college. 

Even at 3, Ruby immediately understood that the reason we were taking this seemingly endless walk in the windy drizzle was a good one.  Even at 3, she knew that she didn’t like the pokes and prods of diabetes.  She didn’t like the need to eat when she wasn’t hungry, or to avoid the donut holes at playgroup.  She knew she didn’t like how uncomfortable she felt with low or high blood sugars.  Maybe she even knew that she didn’t like how anxious and distracted diabetes sometimes made her parents.

Ten years later, we’re still walking, for reasons which aren't much different.  We’ve walked in different towns, with different people.  What’s remained the same is that we’ve walked closer and closer to our dream of a safer, healthier, easier life for Ruby. 

We’d like you to walk with us this October, in body or in spirit.

While writing the letter is a challenge, watching the response makes it worth it.  I'm pleasantly surprised every year to be reminded that friends, coworkers, family and even tangential acquaintances care about the impact diabetes has on us and on so many other people.  We've raised about $2000 this month and have a team of 15 people walking, with the possibility of more of each to come.  I'm glad we're doing this! 

Time Suck

A sampling of annoying events from the past few summer days:

I received a lunchtime phone call from the beloved nurse-free music program.  "I'm 72.  How should I bolus?"  The question took several minutes to sort out.

While at the pool, she had to stop to disconnect or reconnect her pump while her friends were already running for the diving boards/ping-pong table/snack bar.  This scene repeats several times daily.

She had to leave her friends in the pool to treat a low blood sugar.

We delayed leaving for the pool to replace the tape on the Dexcom.

We delayed leaving for music to add tape to the Dexcom.

I spent half an hour online searching for tips to keep the Dexcom stuck when frequently submerged in a swimming pool, lake or ocean.  (Suggestions are still welcome...).

We expected to do a quick site change, only to find that the pump battery needed to be replaced and the supply of wipes needed to be replenished from the downstairs closet.

A desire for a summer peach turned into an ordeal involving the food scale and the calorie king app since it was the first peach of the season and we couldn't remember the carbs.

A group of friends descended on the kitchen for a snack break.  She was the last to eat, as usual, since she had to stop to check her blood sugar, read the nutrition label, and bolus for her food.

A cure and/or a bionic pancreas will some day dramatically improve my daughter's health.  That, in the big picture, is the reason we want these things.

The other benefits are indisputable though.  When the day comes, we'll go through every day without any of these kinds of stops and detours.  She'll stop being the one lagging behind at the pool.  She'll dive into her friend's pantry right along with everyone else.  Diabetes won't delay the fun.  We can't wait.

Bits and Pieces 3

 It's another in an occasional series of posts collating and commenting upon some interesting (at least to me) diabetes links:

Animas has submitted for FDA approval for their Animas Vibe for use in the U.S.   The news is summarized here on Diabetes Mine. This product sends data from the Dexcom G4 continuous glucose monitoring sensor directly to the insulin pump, eliminating the need to carry an additonal receiver.  Also notable in the article is that Dexcom has submitted for FDA approval for pediatric use of their G4 product, hopefully greatly reducing the red tape families must currently weed through in order to obtain it for their children under 18.

While our family loves to travel and see new things, the airport experience has often left much to be desired.  If you haven't done so, please take a moment to sign this petition to standardize TSA screenings for diabetic persons using wearable self-monitoring medical equipment.  A look back at a couple of our family's airport experiences can be found here.

It was fascinating to follow Anna Floreen's experiences wearing a Bionic Pancreas.  There are seven pieces up on Glu, the first of which is linked here.  I'm a realist.  I know that the research process moves slowly and that the FDA approval process for even the simplest of things is grueling. Yet reading about someone out in the world wearing equipment which eliminated her need to actively manage her diabetes gave me great hope. One of many take-aways for me was that while this technology will not constitute a cure for diabetes, it will be life changing.  Yes, there will still be physical baggage of sites and technology to carry around.  Yet the mental baggage will be so much reduced it made me wonder what fascinating things I would think about should technology take over so much of the diabetes drudgery.

Some of these developments seem, perhaps, more significant than others.  Yet the bionic pancreas won't be completely anxiety-free if we can't get it through airport security without a fight or a panic attack.

Ten Years

'Today's the day,' I thought as I bounced out of bed. I threw on shoes and a jacket and ran out the front door.  I ripped my newspaper out of its plastic bag and impatiently flipped it over to see the front page headline.

"Govenor approves ...."

Too late to make the front page, I guessed.  I quickly fired up the news app on my phone and started to scroll.  Nothing.  How could this be?

There must be some mistake.  I clearly remember the conversations ten years ago today.  I was told not to worry.  I was told to be patient.  I was told developments were occurring every day.  I was told that in 10 years there would be a cure for diabetes.

Ten years ago today, as my little girl laid helpless, full of tubes and hooked to countless monitors, I was told to be grateful for what I had.  And indeed I was and continue to be grateful that she survived the trauma of diabetes' onset.  I'm grateful for each and every helpful person, vial of insulin, and useful piece of technology we've encountered since that terrifying day.

Yet every extra day she spends living with diabetes makes me increasingly eager to open my newspaper one morning to find that headline.  The one that tells me it's all over. 

It turns out today is not that day.  It's unlikely tomorrow will be either.  Yet I live in hope that some day, 1, 5, 10, or 27 years from now will be that day.  After all, someone in an emergency room somewhere today must be being told not to worry because "there should be a cure in less than 10 years."

Enough Already

Here's a collection nobody wants to have:

It had gotten to the point where they'd taken over most of a dresser drawer.

Though they're all size 10-12, my daughter decided she couldn't wear all of them. She kept her favorites and donated several to the Red Cross clothing bin. 

 I just hope I kick myself someday when 'cure diabetes'  

t-shirts are selling for buckets of money on e-bay.