Saturday, July 2, 2016

The Bright Side

The Bright Side

As I sat on a plane coming home from Washington, D.C., I thought about a lot of things.  Not only did I wonder if my house was clean and all the boys’ blood sugars were documented (so my OCD mind could relax and average them), but I also thought about this blog and how my life has changed since Diabetes, uninvited, barged in.

It is hard to pick what to mention first, so in no particular order.  And, since I’m a list person…

1.        Knowledge is power, and I have learned more than I ever cared to know about this disease.  I have learned more than I ever thought I would about Auto-Immunity.  Nursing school only skimmed the surface, that’s for sure (so if you encounter a nurse who doesn’t know much about T1D, don’t hate!)! Given that, there is SO much more to learn and the opportunity for understanding on a deeper level is probably beyond my IQ capabilities.

2.       My “Something to Believe In”.   Juvenile Diabetes Research Foundation. If you have talked to me for longer than five minutes, you know where are two things I can talk about until I am blue in the face:  Bon Jovi and JDRF!  .
When my boys were diagnosed, I was in the throws of running a lot of 5Ks. (That has changed for sure, as has my weight, but let’s not discuss that!)   Most 5Ks benefit some cause or another, so I combed JDRF’s site for more information (for knowledge) and seeking a 5K.  Instead I found the “Walk to Cure Diabetes”.   We gave it a shot in 2012 as Aiden’s Army (team selected and shirts printed before Asa was diagnosed). Our team was small and we only raised a little bit of money. Fundraising gave me a purpose.  It was my way to help those who could best help my boys.  Needless to say, one thing led to another, and my involvement with the now-monikered JDRF One Walk has grown.  We will participate for the fifth time this year as The AA Team.  Nope, not batteries, not American Airlines, and not that “anonymous” organization, but rather, Asa/Aiden team! (Bon Jovi, Something to Believe In)--sorry, couldn't help myself!  

7-YEAR-OLD Aiden, 2012, Aiden's Army

3.       Expounding on point #2, my involvement with the JDRF One Walk has landed me more volunteer opportunities with this great organization.  JDRF is the one organization focused solely on finding better treatments and a cure for Type One Diabetes.  80% of their budget is spent exclusively on their mission:  research, advocacy, education. 
a.       I currently serve as a JDRF Mentor.  This means, upon diagnosis, new families request a mentor. JDRF pairs up similar mentor-mentee families.  So, when given a new name, I reach out to that family and offer them whatever support works for them. Every time I see one of "my" families being active and involved, I feel like a winner!
b.      Last year, I was a JDRF One Walk Family Team Coach.  This means, they thought I was good enough to reach out to new teams and sophomore teams to help them out.   I made calls and sent emails to help those teams become successful in fundraising and more vested in JDRF.  The more we all work together, the more $ to help all of our kiddos!
c.       This year, I am the JDRF One Walk Family Team Chair.  This means, I lead all of the Family Team Coaches.  So, much of the same as point (b), but on a larger scale.
2015 The AA Team.  MY how we have grown!

4.       Further, I was SO blessed and fortunate (see last blog) to be able to represent my Greater-Fort Worth/Arlington JDRF Chapter, my boys, myself, my state, and all of our T1D folks in a trip to Washington, D.C. last month.  Never did I anticipate the invitation.  We were able to attend the JDRF One Conference and advocate on Capitol Hill for funding for the Special Diabetes Program and CGM Coverage for Medicare patients.  (You can, too, by contacting your Congresspersons and sending a simple email.  More info at If you had told me four years ago this is what I would be doing this year, I would have requested you submit to a drug screen.  It was such a fantastic opportunity, and I hope I made an impact with someone somewhere.

5.       The book, yo!  I almost forgot.  Self-professed Grammar and Spelling Nazi and lover of our language, I always wanted to write a book.  Once upon a time, I drafted a fiction book, got about halfway through and lost the time, ideas and interest to complete.  Maybe one day I will wander back to it.  As I have told the story 100 times, I was inspired to write “Mommy Can’t Fix It” after a friend of mine’s son was diagnosed with T1D about a year after Aiden was diagnosed.  She reached out to me a lot those first few months, and I was delighted to help her.  Every time she asked a question or vented how she felt, all I could do was answer her, reassure her, and remind her she was not crazy.  This led me to think.  I read several very good books about taking care of T1D, but not one mentioned the things I felt.  So, I wrote.  2012 was easily the darkest year of my life.  Beginning to write was cathartic and helped me to re-find myself and my focus.  The purpose of the book was to obviously share our story, but more so, to help some other Mommy or Daddy out there not feel alone, not feel crazy.  When I get a random email, Amazon review, new FB page Two Too Sweet “like” or blog comment, then I know my mission was accomplished.  If you do not have a copy yet, it is available on Amazon (Mommy Can't Fix It).  The proceeds I receive from the book I donate to our JDRF One Walk Team annually.  One day, I will get around to writing the follow-up book (which several have said I should do).  Title is in my head…..that’s a start!

6.       Finally, I have met some of the coolest people ever.  Ironically, without Diabetes, our paths may have never crossed.  If I tried to list them all here, I would surely forget someone.  So, in the interest of not hurting feelings or offending someone….you know who you are!  Through my Facebook parent group, Type One Family Network (what a Godsend and life-saver that group has been!); through Camp Aurora and Texas Lions Camp; through my local JDRF Chapter, JDRF conferences, JDRF One Walk,  JDRF Promise Ball, JDRF meetings, and Washington, D.C.; through the wonderful Endocrinology team at Cook Children’s Medical Center; through those who have reached out to me after reading “Mommy Can’t Fix It”; through those who have put new families in contact with me over social media because that “friend or friend of a friend” needed some help…the list goes on.  Without T1D’s intrusion, then I may never have been able to call you my friend!

There are way too many negatives in dealing with Type One Diabetes and in my quest to keep my boys alive and healthy.  Off the top of my head:  Lows; highs; the damned expense just to keep my boys healthy; the lost sleep; the time Diabetes steals from the other children; the worry; passing up career opportunities because my focus is to be my boys’ pancreas…..and on, and on, and on. 

But, *don’t tell Diabetes I said so or I will pay for my positivity later*, it is not all bad.  Even though I now live in a world where Yoo-Hoo or Skittles can save a life, I am a blessed and fortunate person.

Help us support JDRF by Walking with us on October 15 or making a tax-deductible donation today.  There is no gift too big or small as every dollar raised is a dollar closer to a cure!

It’s all for Asa & Aiden,