Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Sunday, June 5, 2011

1000 Words..............

I've had this picture sitting in my gmail account for about a month now. It was today that I actually really looked at it. I noticed the signage to the left. I know of no one that "Takes On LIFE" better than my number 1, Type 1 kid.

Go JOE!

A day-in-the-life of AWE.

Wednesday, December 29, 2010

Something Different For Everyone


"Bridget that will not cure it!"

I was mascara-ing my lashes with the oscillating-wanded Lancome black inky goodness and thought I heard some "scuttle-butt" from my two little trolls.

"It is worth a try Joe..." Bridget's response to Joe's outburst was heard over the mascara wand vibrations.

At this point, I was then "lashed-out" and ready for my day. I came out of the master bedroom to find out what was going on. Joe looked plussed. I asked Joe what he was upset about. He responded that Bridget thinks she can cure diabetes. He was not in like mind and he didn't seem amused that "the cure" was being taken on by his 9 year old sister. This is big shit! The cure. I am sure it was a little insulting to Joe that his sister thinks she can figure it out when world-renowned researchers are left empty-handed. To think his ass has been a giant (he got my butt genes) pin cushion for the past 4 years...not to mention his calloused fingers... the lows... the highs... the restrictions... the stares... the regimen... the routine... the neverending-ness of it all has been going on and on and on... and his sister now has the answer! His 9 year old sister has it all "figured out" between reading Harry Potter books and watching Phineas and Ferb! I guess he must have felt jipped somewhat.

Then...

Bridget kindly takes over the conversation (she got my gabby genes) to speak her "peace". She emphatically stated that she thought that microscopic analysis of the melted snow from Joe's boot would hold the answers that we were seeking. She went on to explain that maybe the scientists had it all wrong. "The cure" is perhaps different for each person with diabetes. What if diabetes could be cured by what people love? Joe loves to ice skate. Snow and ice should cure Joe. "Cure it, diabetes, with what they, the persons with diabetes, enjoy and love the most" is Bridget's current hypothesis. Pure. Beautiful. Deep. I get it.

And, again...

No, I am not making this shit up. She even stained the melted boot snow with Methylene Blue!

We have TWO days to fill up the Diabetes Research Institute's "Be Part Of The Cure" banner. Joe is on the right side of the "U" (about mid way up).


A day-in-the-life of the dreaming of, the supporting of, and the talking of the elusive cure.


Related Links:
Magic (Joe's wish from Santa...a CURE)
Envision The Positive (my view on "hope")

Friday, November 5, 2010

MAGIC



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.

*Gulp*


*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".