On Tuesday, I was invited to speak on behalf of JDRF in an attempt to obtain community service fundraising from a local high school. The school had asked four different organizations to come and present a bit about their efforts and how they would spend the money that the school raised.
It was a fun opportunity and I was excited to help JDRF as the school would provide about $25,000 to the lucky charity of choice. To me, that seemed like a wonderful way to kick off 2014 and to help step a bit closer to a CURE!
The night before the high school event, everything in our Naturally Sweet Sisters type 1 diabetes world went wrong. Our brand new replacement DexCom sensors, transmitters and receivers all took a major dump and failed miserably. Starting at 10:00 p.m., with an alarm stating 'Replace Transmitter Battery Soon' to a false 'UNDER 55 mg/dl WARNING', I was running between bedrooms non-stop. The Naturally Sweet Dad was of little help as he had to be out the door by 6:00 a.m. for a conference and needed every ounce of sleep he could gather.
By 3:00 a.m., I was in tears. While the first under 55 mg/dl warning was faulty, the second one I actually caught just from randomly testing blood sugar - no warning from Dex. I woke up our oldest daughter, had her drink two juice boxes and waited until she was in safe range. After that, I went to the computer and called DexCom, demanding two new transmitter batteries be sent overnight. The DexCom CSR was as kind as could be and listened while I went through all of the issues. She then, gently told me that I should try to get some sleep and that the replacements would arrive on Wednesday.
On a side note, you know you sound fragile when a CSR, whom you have never met, is mothering you via a phone line. What a compassionate person... She knew that I needed some kindness!
So I tried to follow her advice, but sleep was evasive. Only when it was time for me to wake up at 6:00 a.m. to start our daughter's morning routine, did I actually feel tired enough to sleep. Yes, the irony of sleep... you only get it when you can't have it.
I tucked away my exhaustion and downed a couple extra cups of coffee. After dropping two equally tired girls off at their respective schools, I was on my way to the speaking event.
Now here is the thing... when you are tired, your emotions are heightened. While I felt fine on the drive and arriving at the school, I was completely unprepared for my response to this video.
And I am sorry if it made you feel the way that I did, but I needed to explain my story.
My two dear JDRF friends played this video right before I was up to speak. I should have known I was going to be a mushy mess because moments before the presentation, one of my friends handed me a wad of Kleenex and gave me a comforting pat on the shoulder.
So as my sleep-deprived mind slowly falls apart, I now have to get up in front of this large group of high school kids and help persuade them to pick JDRF. At the same time, I can't stifle the tears, so I let them go. I decide that I might as well let this group of young people know what type 1 diabetes is really like and I open with that thought... 'Type 1 Diabetes is hard'. As I talk to the kids about my daughters, their friends living with type 1 diabetes and the many adults that still do not have a cure, I notice that by the end of the presentation, a few are quietly tearing up too. I summarize why it is so very important to help JDRF find a cure and I listen as the kids clap. A few come up to say thank you to me and to offer a hug of support when I am done.
Sigh. Such sweet kids, too. Some even dressed up in ties and business suits. If I was less overwhelmed, I would have loved to stay and hear their thoughts for each of the presentations. Truly, this is a group of kids that will one day be our future leaders. However, at this point, I just want to find that wad of Kleenex and make a speedy get-a-way.
Except for this...
At the entrance of the room, a new family appears. A beautiful, pale, thin child wearing a karate gi has appeared. She is flanked by her mother and her father and they are holding her up as she makes her way towards me. Clearly the little girl is ill. We lock eyes for a split second and she offers a small smile. She is there to do the same thing as me but to speak on behalf of the Cystic Fibrosis Foundation. My tears flow again and I feel the room spin. I give my hasty good-byes to my JDRF friends and head out.
The unspoken thought that runs through my head is akin to the horror of dealing with disease; for the child in the karate gi, for her parents, for my girls, and for the Naturally Sweet Dad and even myself.
Please, research. We ALL need a CURE.
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