Thursday, December 3, 2015

Parents are T1D Experts - Now You Can Share Your Wisdom!


Not too long ago, a mom asked me what it was like to raise a 3-year old with T1D.  The question caught me off guard - not because it was unusual, but because I had forgotten what it really, really felt like.  

How is that possible?  

Almost a decade has passed since our little baby girl was diagnosed.  While I remember some things, plenty others have been long forgotten.  This is mostly due to the fact that I had to always stay one step ahead in T1D management.  My brain is at max capacity with the stages of  ((GASP)) teenager hood.  To keep my sanity, I don't have extra room to spare!  



Thankfully, our Diabetes Online Community (DOC) will soon have the perfect go-to-NOW resource.  Wahoo!!!!!  

Dr. Tim Wysocki, PhD, Nemours Center for Health Care Delivery Science and Dr. Jessica Pierce, PhD, Nemours Children's Hospital, Orlando, Florida are building something BIG!  

For the first time (arguably in T1D history), parents will be able to design and build a great website FOR parents FROM parents.  

Imagine that?  Parents- both Moms and Dads - are now recognized as EXPERTS in T1D care.  

As long ago as it was for our youngest daughter, I remember that horrible 3:00 a.m. grocery store shopping trip initiated after receiving an afternoon house call from a visiting nurse that never had a T1D patient, let alone a toddler that was injecting .25 mm doses of Novolog.  Her advice was to throw everything out of my pantry and replace with carb and sugar free foods.  Embarrassingly enough, with tears, I took her advice to heart and hundreds of dollars later, I came home with bags of groceries that ultimately should have been relabeled as laxatives.  A phone call from a JDRF parent mentor a few days later helped me to understand that I had made a very expensive mistake and gently straightened my path to wellness back out.  

Back in 2006, even though parents were indeed the experts, acquiring access to their knowledge was difficult.  Had I been able to get online to a reputable website during that 3:00 a.m. crisis moment, I would have avoided feeding the trashcan all together.

Thankfully, you can avoid my mistakes!  

Here is the information to be a part of parent history.  Feel free to click HERE to read the informed consent.  If you have any questions, you may contact me too.  I spent quite a bit of time talking with the creators and am so excited to know that they are encouraging all of the Moms and Dads that they can find to help join in.  

Even better, there is a nice compensation benefit too.  

I am sure that everyone could use an extra Starbucks (or three) to help with those long, blood sugar checking nights.  Or like I needed, to re-stock the pantry!






No comments: