School Blue-nity | #saed


calebThis is part of our story from last year’s World Diabetes Day. We are currently in the planning phases of this year’s School Blue-nity event which will be a little bigger and hopefully at least a little bit better.

When my son’s principal and I discussed holding a school spirit day to recognize World Diabetes Day, I imagined it coming and going like other ones – rather uneventfully.  I am happy to say that was not the case.

Our plan was to ask students and staff to wear blue and donate a dollar to support a cure for type 1 diabetes.  My son, Caleb, is living with diabetes, and the hope was to increase awareness.  Simple enough.

It turned into so much more than that.  I was able to personally draft a message to explain what World Diabetes Day is and a little about what living with diabetes is like.  Caleb was invited to announce the event over the loudspeaker in the principal’s office.  He was asked to count the dollars that were collected.  He was given the privilege of announcing the fundraising results and his thanks.

The impact was palpable.  Every staff member was donned in blue, several from head to toe.  Most students were dressed in blue.  I saw several that know and are friends with Caleb and I smiled knowing they did this for him, because they care for him.  I saw children who Caleb does not know and I thought they did this simply because they were asked to, and maybe they now know a little bit more about diabetes.  Or maybe they have a loved one living with diabetes and they did it in honor of them.  In any case, there was a sea of blue swarming through Caleb’s school and it made us feel good.

It was unifying.

During the day, Caleb followed his normal routine and he had blood sugars that were less than cooperative.  The school nurse commented how he couldn’t even catch a break on his special day.  She too, however, has come to realize that diabetes does not give any breaks.  She followed her empathetic statement with, “well that’s just diabetes, isn’t it?”

Yes it is.

What Caleb will remember though, is not the less than perfect blood sugar readings.  He will remember being special for a day.  He told me his favorite part was making the announcements to everyone at school.  He proudly listed all the teachers who now know him and call him by name. He will remember his friends who wore blue and gave dollars to show their respect for him and all people living with diabetes.

The day was a great success.  I am grateful to all those who took part in it and who support Caleb at school every day in such a caring way.

We are already planning how to build upon this event for next year.

Originally published at http://www.wddusa.org – November 2009.




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“It’s Like Heaven” | In Caleb’s words

I asked Caleb to help organize the new month’s supplies.  While doing so, he apparently became inspired to create more DArt.
I had been making dinner and Caleb was humming away as he often does.  I heard him say in his upbeat, happy-go-lucky way,

“Hey mom! Look! It’s an archway to a diabetes free world.”

He thinks another moment and states with equal excitement,

“It’s like heaven.”

Archway to a diabetes free world

#DArtDay | Fun and Games!

So, I accumulated a bunch of supplies, mostly used, and threw them on the dining room table. With only a little brainstorming with Colin and Lila, Caleb came up with the idea of depicting our cabin from DCamp – Rainbow Ridge:

Rainbow Ridge and all its occupants at family DCamp 2010

He included test strips as stairs, batteries as smoke detectors (I guess there were smoke detectors in the cabin, but I don’t remember), a sun, boats off to the right and lancets representing our family, the two other families, the counselors who bunked in the loft and the nurse coming through the open Pod-door for BG checks and insulin.

Colin created a simple test strip homage to camp:

Camps Barton and Joslin Forever!

Lila made what she called a Pod Blob:

Pod Blod complete with adhesive clouds and a surprised, O-mouthed sun.

Then she was inspired to create a game of chance that works as follows (for 2 or more players):

– Select a Pod.

– If the Pod has a test strip stuck to the bottom, you get to keep it and take another turn.  If there’s no strip, play continues to the next player.

– The player with the most Pods at the end of the game, gets the batteries in the middle as a prize.

Pod Game of Chance

Here’s Caleb with a WaveSense winner:

WaveSense Strip - go again!

And Lila with a Freestyle one:

Another winner!

I joined in and made a simple flower:

Pod Flower

In the middle of it all, Caleb rocked the 100!

Diabetes Art Day 100

Colin, Caleb and Lila were amazingly excited about what they could do with these supplies.  It was a fun time. Thanks Lee Ann for the inspiration! Happy Diabetes Art Day to all!!

“The Day of the Hard Look”

Click to enlarge and read.

There was some news this week in the diabetes community and there have been mixed reactions.  Some are excited, hopeful and encouraged.  Others are frustrated, disheartened and even resentful.

I am a little of both.  I am cautiously optimistic.  That’s how I am in general, and I am the same as it relates developments in diabetes research and potential advances.

A friend blogged about her sadness regarding the outlook for a cure for diabetes after hearing the reactions from others to this week’s news.  The fact that a time frame of five to ten years for a cure has been given to people diagnosed with diabetes for tens of years was a little more than discouraging.  I understand and relate to this.

This is my reply to Rachel:

I don’t think people are made much more skeptical than I am.  I have this book which dedicates a page to every day of the year and describes what people are like based upon the day of the year they were born.  My day is called “The day of the hard look”.  It defines me perfectly – anyone who knows me is fascinated at the eeriness of the accuracy of this book as it relates to me.

That being said, I have hope.

I don’t really understand why people (doctors) need to define a time frame to this. I suppose it’s because it’s something we all want to hear. Giving it definition when it is IMPOSSIBLE to define is what makes this situation that we are in. Once the measurement is defined, we have something to look at and say, “well that didn’t work – they were wrong – they lied – it WON’T happen.”

But I haven’t given up. The time frame may be wrong, but the theory, I believe, is right.

There ARE resources – many resources – tasked to tackle this. I don’t have the slightest clue when their efforts will be realized, but I truly believe they will be. It may be 100 years from now, it may be 10. But I believe this puzzle will be solved.

None of us are sitting around waiting for a cure. We are all doing everything we can to keep ourselves or our kids healthy now.

I think of the people who lived with diabetes in the early 1900s who starved themselves to live another day, every day, in hope of a cure. The cure came for many of them.  It was insulin.  It saved their lives.

Now I am NOT saying that insulin is a cure, because I know darn well that it is not. But for these people it might as well have been. From their perspective it was.

I hate what diabetes does and makes us all do as much as anyone. But, I am so very, very thankful (ok, I’m choking up now) that Caleb has the benefit of the advancements that exist today. Even on the worst of days, when I don’t think I can take another second of the crap that diabetes presents us, I remind myself it could be so much worse.

I don’t know when there will be a cure, but I am still hopeful.

More than that, I am hopeful that along the way there will be many more advancements that will make living with diabetes easier and safer. If there are as many in the next 10 years as there were in the last 10 years, living with diabetes in 2020, when Caleb is just 17, will be a very different thing than it is today.

I have read a lot of the responses to Wednesday’s news and appreciate the varying perspectives that have been shared.  Although different, and at times at opposite ends of the spectrum, I am able to relate to most of them.

I am “the day of the hard look”.  No one who knows me would argue this.  But I am still optimistic.  Cautiously optimistic, but optimistic nevertheless.

“This is Caleb…” – the origin #dblogday

A little over a year after Caleb was diagnosed, when the fog had cleared, we had experienced all our “firsts” and things were more or less chugging along, my attentions shifted.  The present was under control, now what about the future?

I made my first video.  The intent was to bring attention to work being done to find a cure for type 1 diabetes.  It turned into so much more than that.  It entered me into a world I hadn’t realized existed, or at least one that I could be so much a part of.

Caleb, his face, his story, his personality, have all stretched across the world and brought me, and him, within reach of a support system that we would not otherwise have. I am so grateful for this unexpected byproduct.

This is my first work.  When I made it, I could not watch it without crying.  No matter how many times I watched it, I would choke up.  Now when I watch it, there are two things that I note: (1) how much more effective my message could have been had I made it more succinctly (yes, it’s long – sorry), and (2) how my perspective has changed.  The story is still true.  The spirit of the message still resounds.  But now I know the Caleb who has been living with diabetes for almost three years.  He has adapted.  He has flourished.  He has shown me what perseverance is.  Diabetes does not define Caleb. He just happens to be living with it.  I can watch the video now without tears because I know that Caleb.

So, as this and other videos I have made begin, This is Caleb…

At least a part of him.

We walked.

Caleb at the JDRF walk - 10/18/09
Caleb at the JDRF walk - 10/18/09

We walked to raise diabetes awareness and funds for a cure.  We were overwhelmed by the generous response from our friends and family.  We set out with a total goal of $1,000, hoping for perhaps $500 of contributions that we would match.  You met that challenge and more than doubled it.  Thank you so much for all your support!

I’ve seen so many pictures of walk teams with blue skies, colorful t-shirts and well, sun and warmth.  Our pictures are a little different.  But that’s okay.  We walked in honor of Caleb and all PWD because we want better for them.

I’m so proud of my family.  It was pouring on us, forty degrees, strong winds whipping our faces and our path was riddled with puddles.  Lila was “bubble girl”, essentially wrapped in plastic.  Not a single complaint from anyone.  Caleb, Colin and David were the last walkers there – still trudging through the mud and puddles while others were packing their vehicles or were long gone.

At the walkThen we returned to our vehicle, took off our soaking layers and headed home, stopping for a well deserved treat of Dunkin’ Donuts on the way (I’m happy to report BG has been hovering between 80 and 100, with a nice flat arrow).

I knew we would create a memory today.  I had pictured it differently, but it’s a great memory nonetheless!

Anyone interested in making a donation to the JDRF can do so here. Or just click to see and hear the goal thermometer explode!!

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