Friday, July 5, 2013

Road to Washington, DC

In less than 48 hours, we will be in Washington, DC.  Well, 5 of us will.  Tessa will be in Nebraska.  She is going to spend the week with her aunt and family.  While running errands and organizing everyone, it occurred to me that,  for Tessa, this trip will be the first time in her lifetime she will be totally away from Diabetes.  She doesn't have diabetes but she lives it.  It makes me sad that I don't get to share the "freedom" with her but I am so excited for her.  A full week without hearing, "Are you high?" or getting to eat at a restaurant without worrying about carb counts and the presence of gluten!  However, it also brings to light the importance of what we are doing in Washington.

Here is a link to the brochure for the Special Diabetes Program.  http://advocacy.jdrf.org/wp-content/uploads/2013/03/5-SDP-Brochure-final1.pdf   When the kids meet with our state's members of Congress, we will be speaking to them about how T1 Diabetes impacts their lives every day.  They will request funding to continue for the SDP because it has made a difference.  Type 1 Diabetes is increasing at a rate of 3% annually.  It isn't something that can be ignored.  But, neither is the progress that has been made in  the areas of science and technology.  How cool would it be if ALL of my kids could take a vacation from Diabetes?  If other children could never get Diabetes?  If there was a cure instead of just a treatment?  And, that is the premise for the work that lays ahead of us next week. Stay tuned for updates through the week, or if we get too crazy busy, you might just have to settle for the summary.

To give you an idea of what traveling with T1D is like, I have included a picture of the kids' extra supplies.  This is just extra food, strips for meters, extra meters, syringes, insulin, set changes, glucagon, insulin, batteries, glucose tabs, etc..times 3!   It doesn't include the stuff they keep with them.  To prepare, today I went to the pharmacy, Target, the grocery store and the gluten free store.   In contrast, Tessa's pile includes a suitcase and an extra pair of shoes.  Not to minimize the travel preparations of any family, because I know it is a lot of work taking kids places, but the only thing I needed to buy Tessa was some new elastic bands for her hair!  
Which brings me back to the question:  How cool would it be if there were a cure?  I posted on FB to the group of Bismarck/Mandan families with T1D.  I told them that we are taking them all with us in our hearts because they won't fit in our suitcase.  I hope they realize how true this is- because this isn't our battle alone!  On a side note I am sure these mommies will appreciate,  I was so wrapped up in the writing of this post, I just set the fire alarm off boiling water!  A vivid example of how Diabetes can interfere with the most mundane activities, even indirectly!

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