Little Kycie Changed the World. Period.

KycieAs most of you know by now, Little Kycie has lost her battle.  In a statement released by her family:
Her mission on this earth was complete.  We have found inspiration and strength from her courage.  We are thankful for the last 5 months that she was able to be home with her family and at the same time change the world.—The Terry Family.

I was in my hotel room when I heard.  I cried.  You may have cried also.  I know in all my heart and soul that Kycie, Little Reegan, and others will change this world—-our world.  They have changed it already.  They have saved lives already.  They will continue to do so.

I have just a few thoughts today, but mostly I would ask that you hold the Terry family up in prayers; they need our prayers right now.

First and foremost, our deepest condolences to a family that has acted with the most amount of grace, respect, and in manner that has captured all of our hearts.  Their grief now must be insurmountable.

There is much more I want to say and will say……..but I will not do it today.  This week is for prayers, thoughts, and holding up a family that has meant so much to all of us and who have inspired all of us beyond measure.

As I read the posts over the last two days, I wanted to share something that Kycie’s Dad shared with me while they were going through everything that they were going through.  He wanted Kycie’s story told but it was very clear that they wanted her story to be uplifting and educational without pointing blame.  We need to give their family the respect of acting as they have wished.

Action?  There will be plenty of time for action but I wanted to share what Josh shared with me a little while back.   They have opened their story for us to watch unfold.  They have shared their hearts.  Let’s remember what thy have asked of us as well as we all move forward to try to change in honor and memory of the Reegans and Kycies of this world

Within the last few weeks, I was asked and accepted, being the Keynote speaker at the National Association of School Nurses in Philadelphia.  I was discussing A Child’s Cry for Change (addressing the very issue of making sure a T1 diagnosis is not missed).  I stated to the audience, telling Reegan’s and Kycie’s stories and so many like them with Josh’s request in my mind, that this is not anyone’s fault but it has become everyone’s responsibility to change it to make sure that it doesn’t happen again.  The school nurses agreed.

The second thing I want to share with you today is about Deborah.  Deborah lives in Pennsylvania and she is meeting with her Elected Representative today.  She is meeting to tell her story today, and she will also tell Kycie’s story and Reegan’s story as well……, hopefully, make much needed changes.

We will talk much more about this up-coming but I felt compelled to share a few thoughts today.  May Kycie’s family find some sort of peace as they learn to cope with the journey ahead of them.  May we learn and accept what we each must do individually to move this process forward.  May we each hug our own children just a little tighter today.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Four-Wheel Drive will Do Little on Ice—Like Diabetes Technology—It’s How You Drive!!!!

car on iceI have often seen four-wheel drive vehicles in accidents during times of cold weather and ice in the New York area where I live.  The reason is simple.  In sand and snow a four-wheel drive vehicle is ions ahead of the crowd but when it comes to ice, it will matter little when you start to slide.

There is a false sense of security to the driver who is unaware that ice is ice and it is dang slippery with whatever you are driving.  Not too unlike much of the technology we have today to manage diabetes.

No matter how good the technology is, or becomes, it will always only be as good as the person who is using these tools.    In as much as the AP, Bionic Pancreas, closed loop system all are in capturing our imagination of managing diabetes; it’s a false sense of security to ever thing that managing diabetes will be done ‘completely on its own’ with no help from ‘the driver’.

The same with the insulin pump and CGMs.  Nothing will manage diabetes for you better than YOU!  Do NOT MISUNDERSTAND me as I love technology and these tools all surely help us with exponential understanding to have better outcomes on the day-to-day management for our kids and all PWDs.  But it’s not uncommon to find those who start using these tools to also have their A1C rise because the user takes their eye off of their own responsibility when it comes to actually managing their diabetes.

The message is a simple one today.  Technology is great but at the end of the day it will always come down to how these great tools get used.  Never think it will be done for you……it won’t.  Food for thought.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

If You Liked Frozen’s ‘DO You Want to Build a Snowman”……..You Will LOVE THIS!!!!!!!!!!


Olaf 1Do You Want to be My FFL? (pronounced Fif El).  It represents the acronym Friends for Life.  The video attached is something that anyone with diabetes can relate.  It was written by Sarah Loebner, a very special young lady.

The introduction read at Friends for Life Conference was as follows:
She—-was diagnosed with T1 diabetes at age 9 1/2 in 2002. Presently pursuing a career as a Physician’s Assistant and she is the pure genius behind what you are about to hear.
He—was diagnosed with T1 diabetes at age 11.  He was a finalist on American Idol’s 5th season but most kids in the room will recognize him from his reoccurring role on Disney’s Good Luck Charlie.
With special apologies to Disney, I present Sarah Loebner and Kevin Covais singing a special song with special words.  Listen closely to the words.

I share it with you (click the picture above) because the diabetes community needs to hear this, your kids need to hear this, I needed to hear this.  A FFL does not always have to happen at a conference, this conference; but in our so incredibly complex lives, we all need a FFL.

Nice job CWD allowing this song to be presented at the highlight of your conference.  Nice job Kevin and super nice job Sarah Loebner at creating something so special.
So share this with someone you know and love because when it comes to diabetes, some people are worth melting for.

Take THAT diabetes.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.