Thursday, July 11, 2013

Reflections on JDRFcc13

Sitting here, writing, while TJ is at baseball practice seems a somewhat surreal.  "Normal" life has resumed and we have been home less than 24 hours.  Yesterday at this time, we hadn't even boarded our airplane after our amazing experience on Capital Hill.  I am going to touch on the highlights but I don't think anything I say will do the experience justice.

The City:
It was an experience in itself watching the kids take in history.  TJ was in awe of the sheer size of the monuments. Tylie was amazed by everything around her.  She literally walked at snail's pace so as not to miss a single thing.  Taya just soaked up the atmosphere.  One of the most compelling things we did was to see the Changing of the Guard at Arlington.  Perhaps it was more meaningful because without the sacrifice of those who came before us, we would not have had the opportunity to come to Washington and plead our case.
The kids by the Reflecting Pool on the mall, wishing for a cure!

The Conference:
I am not sure it can be called a conference, exactly, but that is how I think of the first two days at the motel.  I have already highlighted day one in my previous post but from there, we really got busy!  The organizers of the event, Hasan Shah and his staff, Camille Nash and Angie Platt, as co-chairs and the numerous volunteers have to be commended.  Our family felt prepared upon arrival and any questions that came up were easily answered.  The Town Hall meeting was inspiring.  Afterward, Tylie said her new goal was to be a part of that panel someday.  TJ couldn't get over all the athletes- racecar driver, Charlie Kimball, Gary Hall, Jr., baseball announcer, Brian Kenny, and Ray Allen in the audience.  He has always thought nothing could stop him and their stories only proved his point!  More than once during the course of that meeting did I feel my eyes tear up.  On Monday, the kids had been interviewed and Tylie had responded to a question saying, "I have Diabetes like I have blue eyes and blonde hair.  It isn't who I am."  Both Troy and I felt ridiculously proud in town hall meeting when Mary Mouser stated virtually the same thing!  These T1 kids grow up fast and they grow up smart!  The Blitz meetings were a bit overwhelming for the kids.  Tylie vigorously took notes afraid she would forget to say something important.   Troy noticed that they were very similar to the role play situations they do as part of DECA competitions.  Tylie and Taya have both participated in these events and it helped them to be prepared for the meetings on the Hill the next day.  TJ, especially, appreciated the social hour as he had more time to mingle with his new friends.  He came home with a lanyard full of pins and stories to tell about each one.
TJ and Charlie Kimball
The Blitz:
The big day was on Wednesday.  We loaded the bus before 8 am and hit Capitol Hill.  We really had no idea what to expect at these meetings and each one was quite a bit different from the other.  All were positive.  Two of our meetings were delayed as Senators were both held up testifying at hearings.  We watched them on the monitors in their offices.  In addition to attending a hearing ourselves, the kids got a first hand look at the day to day workings of our elected officials.  They are very busy people!  It made us appreciate even more the time they were able to give us to tell our stories.  The hearing itself was a little emotional for me.  I don't know if I was overly tired or just overwhelmed by the sheer number of people there hearing the testimony, but several times I got very teary eyed.  Listening to Jean Smart talk about her doctor recommending abortion, Ray Allen so clearly describe the parenting perspective, listening to Jeffrey Brewer and Dr. Rogers speak about where we are in the research- we have come so far, but yet there is far to go.  Senator Heitkamp said it best when she stated in our meeting that much time has been spent on cancer and heart disease.  She said, "That isn't a bad thing but more needs to be done for Diabetes.  I believe we will have a cure."  She happened to be our last meeting and we couldn't have asked for a more positive finish to an incredible day.  An unexpected special moment occurred during the group photo when VP Biden gave TJ is small American Flag pin and Tylie got a hug.  He also told her he didn't think girls should marry until they are 30!  How cool is that?  We left Capitol Hill feeling invigorated and empowered.  Tylie even commented that maybe working in government would be an "ok job."  We couldn't be more proud of all three of them. They have grown beyond measure by this experience.
Ready to go meet some lawmakers!
The Work:
Oh, but there is still much to do!  I told Camille before I left that we wanted- needed- to do more to get the word out in North Dakota.  Troy stated how good the experience was for our family.  All three kids said they would do it again in a heartbeat.   They are lobbying to go to the Friends for Life conference next year to continue making connections and to keep spreading the word.  They are speaking to our local parent group in August about their experience and already talking about meeting with our senators and representative again soon.  I have no doubt they will lead Promise meetings with a flourish! I am working on a meeting with TJ's principal to talk about a JDRF School Walk this fall.  He can't wait for our annual talk with his class, as this year he will have so much to show them. He has already re-named his little stuffed pancreas that he uses as a prop, "Arty", short for artificial pancreas, of course!   Right now, I am so pumped up I want to quit my job and advocate 24/7, but sadly, we have a house payment...and medical bills!  But, we will make the time because we have felt the power of our voices.  Since we have been home today, I have already received a text message.  A friend of a friend has a newly diagnosed child and wondered if she could call me.  It seems I get those messages more frequently, lately at least once a month and sometimes twice, and I'd really like for them to stop.  I'd like to not pick my son up from baseball to find his blood sugar 425 because somehow his tubing literally got tied in a knot, starving his cells of insulin.  I'd like to not have that extra layer of mother/daughter animosity simply because I cannot stop myself from asking if blood sugar has been checked .  Of course, that is only the start of a list based on what happened in the 5 hour we have been home.  D does not give us a break.   When I tucked TJ in to bed tonight, after changing his site and restarting the flow of insulin, I thought how nice it would be to go to bed without fear.  As he held tight to his JDRF CC Build-A-Bear with VP Biden's American Flag pin proudly affixed to its tiny t-shirt, I again resolved to make the time to continue what we have started this week. Now that we have seen what we can do, advocating is no longer a choice- it is a responsibility!
JDRFCC13: Advocates and Friends- They ROCK- every last one of them!!!

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