Friday, November 5, 2010


The end of a medical condition.

To be healed.

The elusive CURE.

Joe was going through his "Santa wish list" the other morning while I was driving him to school. Many of his wish items weren't a surprise to me. Balls, pucks, sticks, nets, another marble run set, books, etc. came rattling off his tongue. He was contemplating how Santa made all of the toys, how he obtained plastic, how he assembled them. He then started talking about Santa's "magic" and how Santa can "magically" obtain those "hard to get items" or those items you thought were spatially impossible to load on the sleigh, or cram through the chimney, or to position in your home.

As Joe is just yammering on and on and on about Santa, I am listening. I am trying to take note of any items that are "must haves" from Santa. To be honest, I am also thinking a "for f*ck-sake it is the day after Halloween dude and already we are moving onto Christmas?". My profane thought feed sequence was then abruptly stopped, when I heard Joe continue to talk about Santa's "magic" and his biggest "wish" was for a CURE. And. He thought maybe, just maybe, Santa could pull that off. A CURE.


*Big Swallow*

In the four years since Joe has had Type 1 I have always been very cautious in this territory. The "Cure Territory" is dangerous I think. Have we participated in JDRF WALKS? Sure, absolutely, whole-heartedly. My husband has chaired two of them. Our family has volunteered our time to help organize three of them. We have assembled large teams. We have raised, thanks to our friends and family, tens of thousands of dollars over the years to help "fund a CURE". I have always been careful in what I say around Joe during the fundraising, the letter writing, the Walk Kick-Off Luncheon, and in general about a CURE. You see, I have never wanted him to think there is anything "wrong" with him per see. I have never wanted him to think something about him must be changed or fixed to make him "right". I have never wanted him to count on a CURE in his lifetime. I don't want him to be disappointed.

My hope flickers like a candle in the wind. Sometimes it burns strong when the wind lets up a bit, but for the most part it is a slow, barely visible burn. I have posted on my hope for a CURE. Here is part of what I had to say...

....I think "hope" means different things to each of us. It is a personal thing
to choose to have hope, what one is going to have hope for, and if they are
satisfied with the journey of having hope.

For one to have hope they need to be able to envision positive outcomes and
they can even see the pathways in which what is "hoped for" is achieved. Many
persons with diabetes have said to me that they have been "promised" a cure for
years. "A cure is just 5, 10, 15 years away". Years and decades come and go, yet still "the cure" eludes medical researchers.

I look at the path of hope and the path to a cure as a "stairway". You
need to have your footing on each step to progress to the top, to your
destination. With each discovery regarding type 1 treatment, with each finding
of a new technology, with each failed "cure" scratched off the list of what
researchers are currently working on we take a "step" up the "stairway" of hope;
up the "stairway" toward a cure....

So, back to my dear Joe. He is practical. He is mature in many ways beyond his years. I think in his heart of hearts he knows there is no way that even Santa can muster up a CURE. But, together, someday, sometime, maybe not in my lifetime, possibly not in Joe's lifetime, but in future generations perhaps the elusive CURE will be found. In the meantime, we must all work our way up the "stairway" one step at a time. Research must be funded; potential CURES investigated; failed theories crossed off the list; new hypotheses studied; more trials conducted. Each trial, each tribulation, each setback is a step in the right direction.

So, after I visited Karen's Bitter-Sweet yesterday I asked Joe's permission to place his picture and his story on the Diabetes Research Institute's Banner for a CURE. Joe was "in" on that action.

Here is the photo with what Joe wanted me to type.. Go check it out.

A day-in-the-life of working and hoping our way up the "stairway" to a CURE. To "magic".


Pam said...

Oh my ... someone PLEASE call "Leak Detectors"! I am a blubbering fool over this one, Reyna! My husband (who isn't fully awake) is grumbling at me ..."what the H~LL you crying about!!??"

I am always prepared these days for your "zingers" and "F-Bombs" !! but this cuts to the soul! There will be a cure, darling Reyna!

Unknown said...

BTW, Joe is in the "U" on the C-U-R-E banner. Took me awhile to find him.

Cindy said...

Aw, what a sweet and wonderful boy you have! If only Santa were just that magical! Anything is possible. Someday, someday....

Nicole said...

OK I cried when Joe thought Santa can give us a cure!! What a wonderful little guy you have there and I love the candle in the wind analogy...beautiful and so true!!
Your make me laugh, cry and inspire me and touch my heart all in one post :)

Julie said...

You're really hitting your stride these days. Loved this post.

Kelly said...

Funny....Maddison made her xmas list the other day too! Its 90 degress in Phx and she's thinking about Xmas!

Lorraine of "This is Caleb..." said...

Aw...I want Santa to bring it too. One step at a time - if only the steps weren't so big!

That is some picture! :) Too cute.

Go U! And go R (that's where Caleb is). :)

Heather said...

I want a cure too Joe. We just have to go about it one step at a time. :)

Denise said...

tears here too. there is one thing about us wanting a cure for our children but when they talk about wanting a cure, it hurts. love to you.

Jen said...

Aww are killing me over here! That is so sweet.

Meri said...

I wish santa could pull it off too. He is so unbelievably adorable! That face!

Don't tell him I used the word adorable though...say handsome, amazing and cleaver!

Joanne said...

How sweet... asking Santa for a cure. Made me cry. If I could only have one present for the rest of my life, I would chose that.

Jules said...

So touching, Reyna. Santa would be my person of choice to do the job.

Sarah said...

Sob...sob...ugh...don't we all wish that were a deliverable gift to our children. I've told countless people that in a heartbeat I'd give Isaac my pancreas if it could work. A cure is an amazing dream.

Hallie Addington said...

So sweet. I probably would have started blubbering. And Sweetpea insisted on christmas music today after seeing the trees at Target! It's coming..

shannon said...

Beautiful post and a beautiful message he wrote with his photo. Uplifting and a little heartbreaking at the same time. Thank you for sharing.

Amy said...

Maybe if all 16,000+ families with T1kids wrote Santa a letter asking for a cure, it might happen?! Worth a try, right?

Oh Reyna, tousle Joe's hair and give him a big 'ole lipsmack on the forehead. He is one super sweet boy.

And, aren't you doing something pretty fabulous this weekend, yourself? Like runninf a 1/2 marathon or something? IF it IS this weekend, rock it sistah. ;)