Wednesday, June 18, 2014


“Piglet noticed that even though he had a Very Small Heart,
 it could hold a rather large amount of Gratitude.”
A.A. Milne, Winnie-the-Pooh

I wish I just walked around recording my conversations with Ben because sometimes it's hard to believe that someone so young can be so wise.  Just this past Sunday, I was driving around town with Ben and his older brother, Garren, running errands.  And this day I had won the radio wars!  We were listening to NPR and not their horrible dubstep “boom boom” music, I hate.  (I have finally turned into my father.)

On our way home from the supermarket the Ted Radio Hour came on and we all became enthralled with the story told by Eleanor Longden.  The radio host, Guy Raz, was interviewing her about a recent talk she gave at a Ted conference where she described how she started hearing voices in her head and how she was eventually diagnosed with schizophrenia. (Eleanor Longden: Is It Possible To Live With The Voices In Your Head?)

At the end of her interview she was asked this very question:

RAZ: But, I mean, if someone were to say, OK, you're going to wake up tomorrow and you are never going to hear those voices again, what would you think?

LONGDEN: I sometimes feel I should insure my voices 'cause if they ever, do ever go, I'd be out of a job. So my professional livelihood depends on them. I would miss them if they went, which is an extraordinary admission in some ways because I am somebody, who at one point, would literally rather have died than live with my voices.

She then concluded her interview with this comment:

LONGDEN: The human animal is a unique being, endowed with an instinctual capacity to heal and the intellectual spirit to harness this innate capacity. We don't have to live our lives forever defined by the damaging things that have happened to us. We are unique. We are irreplaceable. What lies within us can never be truly colonized, contorted or taken away. The light never goes out. As a very wonderful doctor once said to me, don't tell me what other people have told you about yourself, tell me about you. Thank you.

Right as she was saying "Thank you" Ben said, "I understand what she means."

Both Garren and I asked, "Really?"

Ben said, "I am not sure I would ever want my diabetes go to away either ... it's hard to explain why ... it's just who I am."

Garren wasn’t buying it, so he asked, "So you are saying, if there was a pill that could cure your diabetes, you wouldn't take it?"

Ben was then silent for a few minutes.  I looked at him through the rear-view mirror. He looked a bit perplexed and sad.  My heart broke a little.  After a few quiet moments Ben said, "So many good things have happened because of my diabetes.  I have made so many friends and Team Ben."

That’s when Garren interrupted and stated, "If I had diabetes and there was a pill I could take to fix my pancreas I would take it."

Ben thought some more but eventually replied, "I am not sure.  Maybe I would take the pill ... BUT," He added with emphasis, "I would never wish that diabetes had never happened to me!"

I continued to watch him through the rear-view mirror, and he was no longer sad, he was looking out the window seemingly very pleased with himself ... he was smiling ... and I smiled too.

This very question was posed to him last year at the Children with Diabetes conference and I blogged about it here: His cup is half full and then I blogged about it again here: His cup is still half full

It might seem I am a bit obsessed with the question, but what I really am is confused.  I would give my own pancreas to cure Ben's, but he wouldn't even want it.  That seems so odd to me.  I am with Garren, if I were in Ben's place I would take the pill (and if I were Eleanor Longden I would want to get rid of the voices in my head).  But it seems Ben (and Eleanor) might have a better understanding of life than me, and I think it might be more than just finding your inner strength.  Ben is more than just strong.  Ben is happy.  How is that he can so easily and freely embrace his diabetes?

I have been thinking about this conversation since Sunday.  And I have decided what separates me from both Ben and Eleanor, is that they are living their life with gratitude.  When Ben considers what his life would be without diabetes he does not focus on the annoying bad parts.  Ben considers all the good things he would lose.  Ben is grateful.  And this simple act of being grateful shifts his focus from what his life might lack to the abundance that is already there. Ben’s life is filled with family and friends who love and care for him, and that is all that he sees.

Ben is wise beyond his years.

And I am grateful for him!

Sunday, June 15, 2014

A Sincere Thank You

Dear Ben's Buddy's Mom/Dad,

Thank you!

Thank you for inviting Ben over for a sleep over (and then even inviting him again).  Thank you for agreeing to do his middle of the night BG checks (even though you must be exhausted from wrangling a small herd of 11-year-old boys all evening).

Your generosity is a gift; a gift which allows Ben to enjoy a sleepover, a rite of passage, just like every other boy his age; a gift which allows Ben to feel included and no different than his friends; a gift which allows Ben to assert some T1 independence outside of my T1 mom hovering eyes.  As you open your home to Ben at the same time you are opening the door to an independent fun filled world, a door which is often closed to young T1 kids.

You are likely familiar with the old proverb which states, “it takes a village to raise a child".  This proverb is especially true for all the kids with Type 1 diabetes.  Ben's village includes me, his dad, brothers, grandparents, aunts, uncles, doctors, nurses, friends and his friend's very generous and loving parents.  Thank you for being part of his village!

From the bottom of my T1 mom heart,