Wednesday, March 2, 2011

Hope for Understanding...

Yesterday was "A Day of Hope". So Charlotte and I celebrated by writing the word on our hands...and spelling it out with insulin syringes. Then we posted our pics on Facebook to spread our message. What message you ask? Well, I'll be happy to share with you....

Hope: to believe, desire, or trust

If you've been following my blog for the past couple of weeks you already know that my oldest daughter, Charlotte, was diagnosed with Type 1 diabetes just over 5 years ago at the tender age of 2. And you know that our family hopes and dreams about a cure for our little girl and everyone else living with T1.

But we have another hope too....we hope for understanding!

We hope that people will...
Understand that T1 is an autoimmune disease. It is NOT caused by eating too much sugar and people do NOT outgrow it!

Understand that T1 is a disease that Charlotte lives with 24/7/365! It affects her ALL the time...awake, asleep, at home, at school, on get the picture. She is forced to think about it every day...checking her blood sugar at least 7 times a day, having her insulin pump attached to her little body, and measuring her food to figure out the carb content so she can dose herself with insulin (since her pancreas can't do it for her).

Understand that T1 is unpredictable. Charlotte can eat the same thing every day, get the same amount of insulin, and do the same activities...yet have a completely different outcome with her blood sugar levels. So when you ask how she's doing and I have that perplexed look wash across my face it's because I have no idea how to answer your question...because despite every effort her sugars can fluctuate for seemingly no reason at all...and they often do!

Understand that insulin is not a cure....and that without it she would die! And that there are still children out there without access to this life-saving drug who need our help (check out the video that Wendy posted on her blog, Candy Hearts).

Understand that Charlotte's insulin pump does NOT take care of everything for her...she still has to check her sugar, count her carbs, and tell the pump this information so that it can help figure out her dose and then allow her to deliver it.

Understand that T1 is "a big deal"...and that it has impacted our lives in more ways than I could have imagined. We aren't able to just pick up and go for a day like we did before her takes planning and preparation so that we aren't caught off guard with a low blood sugar, a "bad site", etc.

Understand that yes, Charlotte CAN still eat anything she wants...and it doesn't have to be "sugar-free"...but, we do have to know how many carbs it is so that we can give her the insulin her body needs to cover for it.

Understand that those well-intentioned stories about the person you know who suffered from complications of diabetes are not well-received...especially when they're shared in front of Charlotte (or any other CWD). Case in point, Haley from Naturally Sweet had not just one, but two people share stories with her about someone they knew who suffered diabetes-related complications. These stories do NOT help us...they only serve to make us upset and worry more than we already do (and trust me we worry plenty already).

So while we are hoping and dreaming of a cure (and working hard to make it eventually become a reality)...we hope that the people whose lives cross paths with ours will take the time to understand!


  1. great post Michelle! Thank you for mentioning me.

    I have loads of hope for your same dream!

  2. Thanks for the mention!

    This statement...
    "So when you ask how she's doing and I have that perplexed look wash across my face it's because I have no idea how to answer your question"

    WHEW...that one hit REALLY close to home!!!

  3. Wonderful post! I agree... Its hope for understanding that we hold on to as well!

  4. I love the way you looked at Hope Day!!

  5. Me Misty...loved the way you tackled "hope". I agree with it all...

  6. I really like your spin on Hope Day. We hope for understanding, too.

  7. Thanks for your comment on my blog... I love this post, you have succinctly said everything that people need to know about t1.

    Looking forward to reading more of your blog!

  8. P.S. I loved your video... Charlotte is beautiful! I think she and Elise would get along very, very well!