Why Live Life in Fear When You Can Live it to the Fullest

CWD Smile Face quitters winnersI heard this statement from a person at the Children with Diabetes Friends for Life Conference in Orlando Florida this week.
“I refuse to let diabetes dictate what I do”.
I like that saying and I like it a lot.  It sort of summed up what thousands of people heard this week at this, the 18th Friends for Life Conference, sponsored by the Children with Diabetes.

When we first became active in diabetes causes after Kaitlyn’s diagnosis, I became the Executive Director of the JDF (now JDRF) Long Island Chapter.  At that time we were one of the handful of chapters chosen nationally to serve as an experiment for a new idea called a walkathon (that for years, was really only run by the March of Dimes) to help increase visibility AND revenue.  The JDF was doing walks before, but they were about to catapult to a whole new level of success.

When I became the Executive Director, the chapter was reeling from the death of a young man named Angelo Centano.   Apparently Angelo had many complications but he also had this incredible spirit, an incredible sense of humor, an incredible disposition, and an uncanny way to get things done despite his many physical limitations.  One day I found a note in my desk and it had a quote on it from Angelo.  It was a simple note, but a powerful note nonetheless:
Quitters Never Win, Winners Never Quit.

I’ll never forgot it.

There are many people who lost their battle against diabetes, many.   You have read about them and so have I, knew quite a few also.  Every single person, no matter their age, that I know who we lost to diabetes was ALSO living life to their fullest when they were taken.  They were not comfortable to just live life in a bubble or on eggshells, THEY LIVED!   I have also felt that the people who choose to believe that they can do ANYTHING with this disease do so and pay homage at the same time, in a way, to those who are no longer with us.

No matter what life throws at us (and make no mistake, we all have something), we cannot avoid how it hits us but WE CERTAINLY can get out there and make sure that we are not stopped…..and we shouldn’t be stopped, ever.  The only thing surpassing all of the incredible knowledge given this week at CWD, all of the wonderfully talented people who did the teaching this week, and all of the great times; is THAT sense of empowerment that even with this disease…….limitation is truly ONLY limited by your imagination.  It’s given to everyone…………………….by everyone.

Today many people said goodbye when they left Coronado Springs to the many, many new friends they all met, and the old friends they have known at this most incredible conference.  They inspire each other to do better.  The push each other to the limit to succeed.  They have instilled in each other the absolute belief that quitters never win and winners never quit………what are you doing to get back in the game?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Hey, Moms of Kids with Diabetes—Olympic Moms have nothing Over You…..Take a Bow.

Olympic Rings MomsOlympic parents.  Specifically Olympic moms.  Ever see them in the stands?  Close-up, upon close-up, of the moms who know everything their child sacrificed and diligently worked at to be in the Olympics.  Proctor and Gamble even did a commercial about Olympic moms.

Yeah, so what.

Actually I don’t mean to belittle those moms and in fact I have great respect for them, But I also am very aware of a different kind of mom.  Moms who go through life with the same hope, the same expectancy, the same anxiety, the same disappointment, the same joy, and the same drive for gold…….but there is no camera showing a national audience the faces of these moms…..in fact there is not even a gold medal awaiting their child…….nit even a bronze….because these moms are dealing with diabetes in the privacy of their own lives, and not in a national spotlight whatsoever.

But make no mistake about it……those facial expressions that you see on TV with those Olympic moms are just as present on these special moms, and are there every day because moms of kids with diabetes are just as diligent, just as involved, just as hoping-for-the-best as any mom of any athlete competing in Rio.

And that’s you (yes, I know—-there are dads too).  So to all of those kids out there living with diabetes, this is to your moms who help their kids strive for gold every day in their own lives.  The gold of getting EVERYTHING life has to offer.  Moms do that.  Your mom does that.  So moms, Imagine your picture within the rings of the picture I included, these are but a handful of moms; but we know that you could fill the entire city of Rio, if you wanted.  Without fanfare, without spotlights, without commercials about what you do…..but just because you are you……you are, indeed, gold.

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

Dear CWD FFL…….Thank You for Saving My Children’s Lives

CWD FaceDear Children with Diabetes Friends for Life,

It’s been 17 years since we started together.  Wow!  Where did the time go?
I don’t know if I’ve ever said this to you before, so I’m sorry it took so long.
Thank you for saving the life of my first child, and also for saving the life of my second child upon diagnosis of this dreaded disease.

After 17 years I looked around this year’s event in Orlando last week and reflected on how fortunate I have been to be here, since day one.  To many, I guess, I’m a CWD FFL insider when in truth, I’m just a CWD Dad.  I volunteer here, and there…….. as so many others do.  None of us are your favorites but what we are is YOUR ARMY of volunteers because in the beginning people were there for us — we must now be there for others. If you are now involved, you should get involved to pass it on also.

You’re not a huge organization with a huge infrastructure……no…..you are a group of people, friends for life in fact, who believe in just plain ‘ol helping. Helping because a two-year old has been diagnose and there is nowhere to turn.  Helping because we are up at 2 am and we don’t have to explain it to you.  After years of turmoil and doubt, coming here we did something we had not done in a long time, we laughed.  That happens when people are comfortable with each other, they laugh.   That happens here.

There were so many sponsors present……but not all….not enough.   It bothered me that Medtronic was not there this year.  Not sure why, its none of my business really, I’m just a volunteer.  But when my daughter went on their pump in 1999, I guess families mattered back then.  I guess they don’t anymore.  I’m sure it bothered you also, and I’m so sorry that it’s such a struggle for you all who plan and coordinate this incredible event all year-long.

You should not have to struggle to get companies involved.  People in our world are VERY LOYAL.  Friends for Life also means clients, patients, and customers ‘for life’….and they should think about that a little bit.  You should not have to seek out companies, they should seek you out to learn how to participate.

When my daughter was a very young age, we learned that education was the equalizer to battling this disease.  We learned to do all we could to ‘own it’ so it would not own us. We were taught.  We listened.  And in-between all of the sessions of knowledge and the updates of research; we laughed.  We talked.  We grew to love people who needed no explanation when we had to do ‘something diabetes’…….they knew.

And after 17 years, I have watched so many children thrive in the world around them. Mine included……because of you.  Us parents learned a thing or two also.

We have been taught and taught well.  No easy feat.  In fact, an impossible feat if one dare to sit down and actually figure out how it all comes together.  But it does.  There is only one explanation that can probably explain it.  Sponsors who care, volunteers who care, families who care and all who dare to dream of learning together….because good friends do that, but those who do it to save the life of a friend’s child are more than just good friends………we are friends for life.
Thanks again.

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

“Why Did YOU NOT Follow Instructions?!?!?” Sound Familiar?

Screaming womanFrom the onset, I want to let you know that I do not have any incredible answers for what I am about to write; but I am ‘putting it out there’ so others may comment on how they have handled this situation which I am hearing more and more.

Parents of the parents.  This includes both sides of the families and you can add aunts and uncles and anyone who should be in the mix as well.  “Why didn’t she do as I asked?”

The frustration is real.  You finally muster up the courage to go out and leave your child with your mom, dad, or whomever and upon your return; you find out that your directions were not adhered to and something was done against your instructions.
Number one.  Take a breath.  We, as parents, have all been there.  Sometimes it is a mistake and at other times it is someone ‘thinking’ they know best.  You are given a choice immediately; do you discuss it now or do you wait?  I know it is hard but remember this; how many mistakes did we make when our child was first diagnosed?  I made some doozies and there was no one there to correct it, we found out through many, many trials.  Remember that point.

When we took our child (and it became children when Rob was also diagnosed) home, we had our instructions from the Doctor.  We had the opportunity (for lack of a better phrase) of 24/7/365 correcting after time after time of ‘getting it’ wrong.  No one is there to tell us our mistakes, we have/had to learn them.

Dropping our child off, and no matter how many times we go over it, mistakes will be made.

I have had the wonderful opportunity to be involved with the CWD (Children with Diabetes) group for some time.  As biased as I am, I have found the grand parents track at their Friends for Life Conference in Florida each year to be incredibly useful, and one of the best that I have ever heard.  If you have the opportunity, get there; and bring a parent or two.  There are scholarships available as well; it is a week you, and your entire family, will never forget.  Game changing for sure.

I share that information because as I have been there over the years I have heard story upon story from grandparents.  Their roles in their grandchildren’s life are as different as snowflakes.  Some heart breaking in fact.

But there are two constants in EVERY single story I have heard.  One is fear. Two is they wanted to know more.  Not unlike us as parents, but we have no choice but to ‘be at it’ always until we get it correct.  Over twenty-one years out, I know I’m still ‘working out the kinks’.  How about you?

I am not saying that our parents should not work harder when they watch our kids.  I am not saying just forgive them when they ‘insist’ on doing things their way.  I am saying, that the more kids with diabetes are watched; cared for; tended to; the better the chance the caretaker will ‘get it right’.  Just as we did/do every day.

I am sure there are people who are involved in situations that are not ideal and the frustration level is very high.  It is my hope that a dialogue can be had with people who have been there and were able to adjust positive; and what those did who were just involved in a cause that was beyond fixing.

I am also a believer that somewhere out there, someone is going through or has gone through what seems like a completely unusual circumstance and can help by sharing.  Nothing is stringer than the voice of experience.

Please share your heartache and your success.  Through dialogue a map can be charted.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’

Diabetes Jeopardy Answer #13 for D-Month. She said “Let’s Meet” in 1999 and Created the Largest Gathering of D-Families on Earth.

Laura Billetdeaux…and the answer is who is Laura Billetdeaux.

In 1999 Laura contacted people online to say that she and her family would be traveling to Florida and if they wanted to meet, they could discuss family dynamic dealing with diabetes.  Laura, who has a son with diabetes, thought that only good could come out of this gathering and sharing together.  She was correct.

She never thought that an incredible 500 people would show up and it would be the dawning of what has become the largest gathering of families with diabetes anywhere on earth.  The Children with Diabetes Friends for Life conference has well north of 3200 people each year where attendees are treated to a buffet of the top professionals in the diabetes world of empowering, managing, and researching for a cure of diabetes.

It has become a family affair with every person in Laura’s family playing a role. people from all across the globe come to the event each year and due to the ‘well-oiled’ organization and planned activity, it is a week they will never forget.

From the CWD website, a little insight about Laura and this amazing program:
A finicky connoisseur of hotel meeting space, cappuccino, and kid-friendly cheese and fruit platters, Laura Billetdeaux is CWD’s VP of Education and Programs. Since 2000, Laura has organized every single CWD conference, always keeping in mind the true purpose of CWD – education and support of families with type 1, and always keeping in mind why it all works – the efforts of so many dedicated individuals. Laura lives in Manchester, Michigan with husband Neal, who graciously and energetically assists with the conference teen programs. They are parents of Sam and Carolyn who both serve as youth faculty at CWD conferences as time allows.

There are scholarships available to those who need financial assistance; everyone should go to this conference, even just once…..your life will change forever.

For Diabetes Awareness Month:
This month, I will be highlighting someone in the diabetes community.  They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place.   I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are.  If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well.  Welcome to diabetes awareness month.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

A Picture. A Thousand Dreams Realized….Inspiration Defined!!!…Read and Find Out Why!!!!!

CWD Picture BallTwo are having their first child.

One was just married.

Four have diabetes, two do not;  Can you tell, of course you can’t.  Diabetes is a huge part of the lives of all six of them none-the-less.

A few are in love.

One is my daughter; the rest I have known for some time.

When I saw this picture I wept.  They were absolute tears of joy.  I’m sure there were others out there that did the same.  They know too.  They KNOW what this picture is all about.

Now those of you who are fairly ‘new’ with this new normal, and those of you who may have a little time under your belt but still have fears every day; hear me with the loudest voice you can. This picture represents every fear, every doubt, every tear that has been shed worrying about the future for our children with diabetes; and throws them right out the window.

This picture is THE LIVING PROOF how important IT ALL is about.

These kids are in the work place, in college, starting a life together, creating a life together, continuing a life of dreams…..they are with everything you can think of……..LIVING their lives to the absolute max..

These kids go back a long way together, a very long way, and that means so do their parents. I’m one.   

Some were diagnosed while still in diapers and here they are as a group of fabulous adults.  My wish is that you have this picture for your child at this age.  Many of us were told a different scenario years ago; none of us believed those scenarios, we believed a life of living.  So did our kids. 

Perfect?  I can hear each parent laughing at that statement; I can also hear each parent sigh and smile at this picture.  There is so much love in this picture, there are so many dreams fulfilled in this picture, there are so many friendships connected to this picture, there are so many stories in this picture and the best part, they have only just begun.

They are our kids, they are our dreams, they are our passion, they are our future,  they are one thousand percent……..Friends for Life. 

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

Limited Only By Imagination……..Our Kids!!!!!!

CWD1334I love sunrises and sunsets.   While I was attending Hofstra University, I would sit atop the tall dorms and watch the eastern and western skies.  It was so relaxing for me.

The sunrises.  Oh my oh my I have stated on so many occasions that no one makes more mistakes than I do in this thing called diabetes.  It is not a phrase of rhetoric, it is a fact.  I try not having to learn things more than once, but not always successfully.  The cool thing about sunrises; it’s a new day. 

I have always lived by the point that a new day means new opportunities.  Both my job (working at the Diabetes Research Institute Foundation), and where I volunteer (CWD, writings, advocacy, etc), allows me the absolute incredible opportunity of something new happening every day.  A new initiative, meeting new people, discussing ideas with people who want to help, and people with ‘skin in the game’ just like us. 

The Monday mistakes turn into Tuesday’s new beginnings.

I hear from teenagers with diabetes so often how different they feel.  How they are told that things cannot be accomplished because of their diabetes. I’m told the same by many parents who also fear that heir kids cannot do as others.  I tell them that it is a lie.  The world is for them to grab and they must make the decision to go out there and get it. 

CWD1346I received two pictures recently.  The hockey player is Sarah who is 15 and diagnosed at age 11; the other is Kelly who is also 15 and diagnosed at age 3. The two photos are absolutely incredible. I LOVE Sarah’s determination ‘along the boards’ and I LOVE Kelly’s face of determination.  Karate and playing hockey for goodness sakes.  Do either of them look like they are not ‘able’ to do anything?

And they can.  All of our kids can.  And many do.

Their parents sent me their pictures which I used in my slide presentation at my CWD Keynote address along with over 50 other kids who have diabetes and are not afraid, and they shouldn’t be.  They inspire us all each and every day that as sure as the sun rises, they are ready to take on the world.  Numerous parents thanked me for the inspiration they needed to see in other kids to remind them that limits are in our minds only.  But of course the thank you goes to the parents who shared the incredible photos of their wonderful kids.

The sunsets.  A glass of wine, perhaps, and just looking at the sun setting in the west is always relaxing to me.  Long Island has beautiful sunsets and as the day ends it serves as a reminder of what the day held.  What went well, what didn’t; and what to change tomorrow to move on.

Moving on is another crucial aspect to dealing with diabetes.  When we think, “….duh!, why did I do that?…..what was I thinking?…….”  Of course those who do not have diabetes in their household can also have these revelations but when there is so much on our plates, and so much more to balance when it comes to diabetes, I’m always grateful for daily beginnings and endings to continue onward.

Like sunrises and sunsets.

Sunrise

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Why Would This Woman Do What She Did??? A Video That Will Drive you to Your Knees.

Sandra StraussEmotional.

Do you get emotional?

Sandy is beautiful and in fact, when she smiles, she is downright breath-taking.  She’s the type of person that, upon entrance into a room, it becomes electric.

She does not ‘say hello’, she hugs you because she ‘means’ hello.  She speaks four languages, and she will share with you that she is a speaker, writer, marketing specialist and a girl who just wants to change the world.

About being the underdog, she writes:  I see underdogs as people with a burning desire to make a mark – who remain committed and undeterred in spite of the odds stacked against them, and who exhibit an indomitable spirit that inspires others. Underdogs have the boldness and tenacity to pursue a goal wholeheartedly, and deserve all the help and support they can get!

She also has T1 diabetes.  When I saw the video that I have included below, I not only cried, but I had to share it with you.  It is of one of the most gruelling undertakings a person can put themselves through.  It is called Tough Mudder which is described as hardcore events in a 10-12 mile obstacle courses designed by British Special Forces to test your all around strength, stamina, mental grit, and camaraderie. 

What!!!!!!

Sandy tells you why she attempts it at the end of the video and it will pierce your heart.  You have to watch it to see if she completes it.   She was not alone in this undertaking and her whole team was made up of people with T1 Diabetes.

This is a video of my friend Sandy Struss. Enjoy.
http://www.youtube.com/watch?v=-VeEoIlUkTw

“….just a girl who wants to change the world.”  Indeed, beautiful.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Sometimes a Princess (or Prince) is Right Next to Us.

Ball MaryI know some very special people.

I hate diabetes and everything about it. The journey, though, has allowed us the honor to have crossed paths with some of the most incredible people in the world.  People who care.  People who give.  And quite frankly, people who love.

These people understand diabetes.  Some volunteer their time.  Some are involved professionally.  Some do both.  They are doers, not merely those who talk the talk; they definitely walk the walk.

They have but one goal; so the people who have diabetes, or a loved one with diabetes, are given the same opportunity as everyone else to gain everything they can out of life.  They learn and share; they share and make people laugh; they care and make people think.

They challenge those who have diabetes in their household to stretch one more foot to get the ‘upper-hand’ on diabetes.  Their hearts are as big and as full of gold as there can be. 

They just do.

The problem with my week at CWD is I had to say goodbye to so many of them.  Back home we all have the one, two, and/or three special people who really help us in this journey but for a whole week I was with about 250 (that is correct, 250).  Every place I turned, someone else giving their time, their expertise, their smile to someone else.

In the picture is Mary.  Mary is just the perfect person to represent the attitude of so many
who try their hardest to make a difference every day.  Whether someone has diabetes or has a sibling with diabetes, has a child with diabetes, or even has diabetes; so many choose to help.  Mary, like so many, are tops in their field with degrees and experience beyond comprehension.

What says it all is what Mary has written in her bio when she is at CWD, You can spot her at the conferences-she’s the one with the trail of kids behind her!

No matter where you are; be very appreciative of those people who give—-we would be lost without them.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

There Was a ‘Back Then’, Before……..Who Would Live Like That????????

Back in timeBefore.

Heavens; what did we do ‘before’?

When I was at dLife, Richard found his way into our forums and chats and once I became a regular in the online community Richard would always ‘pop in’ here and there adding his golden nuggets of incredible information.  You see Richard has been living with diabetes for 67 years.  That’s right, 67!

This week, while at the Children with DIabetes Friends for Life Conference he had a ‘first timers’ ribbon on.  Now being in his seventies, the man still looks to educate himself and be part of the diabetes community; doing something for the first time after having diabetes for 67 years.  If that doesn’t humble you, nothing will.

After meeting Richard, I was thinking on the plane ride home from Orlando; what it must have been like living with diabetes when Richard was a young boy.

I know all of the changes that have occurred since Kaitlyn was diagnosed 21 years ago and there have been so many more since Richard was diagnosed during the 1940s.  It makes me wonder what in heaven’s name we all did before……..before……..SO MUCH!

Imagine our world without devices like pumps, fast-reading glucometers, small needles, CGMs; Imagine our world without CWD, JDRF, DRI, The Diabetes Advocates, The Diabetes Hands Foundation, and so many other areas; Imagine our world without Twitter, Facebook, Instagram, and Pinterest; Imagine our world not connected and not being able to be with each other in the many ways available to us.

Imagine.

We now live in an instantaneous world which readily is available to supply and share information.  Our meters are the fastest they have ever been, and there is even discussions of things like the Bionic Pancreas and the BioHub; words that did not even exist 5 years ago, much less sixty-seven.

The world is forever changing and changing at a pace that on one hand does not seem fast enough but in another; faster than anyone could ever imagine.

When people like Richard were testing urine in a test tube 40 years ago, what would they have said when told that someday you will have something that will dispense insulin automatically?

We are now living in the fastest world of ‘now’ becoming ‘before’ than any other time in our history.  Just a shame that it is all not fast enough……isn’t it?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.