Does Anyone EVER Forget the Hospital Hallway?…..a New Family Just Found Out!

Hospital HallwayA two-year-old little boy was diagnosed with type 1 diabetes recently.  I don’t have permission to share their family’s story, so let’s call him L, and say he was from Minnesota for the purpose of this story.

Through a lifetime of twists and turns and people in far away places, L’s dad and another man met recently.  Under normal circumstances, one would think it impossible that these two men would ever cross paths.  They come from different states and different backgrounds but the older man knew a few things.  He had been at this ‘diabetes thing’ for a few years longer than L’s daddy.

His child was diagnosed at a time when insulin pumps were not in wide use as of yet, CGM were just 3 initials, and ‘hope’ was more a girl’s name than anything else.  The older man sighed and forced a smile, “As well as my child is doing, I wish it was in today’s world than when we started.  The world in diabetes is much different today.”

And that is an absolutely true statement and we should all stop and reflect on what is happening today.  Better treatment, better tools, and so many centers now looking at something to get the body back to producing insulin again.  Some things will take longer than others but being diagnosed today, certainly is much better than years ago.

The older man walked along the beach recently.  He thought of his new friend, his son L who he never met, and L’s Mommy who was home in Minnesota.  He never met her either but he knows……..oh yes he knows her very well.  He knows the hospital smell, the hospital crib, the day bed in the room, the walks in the hospital hallway, and even the clock ticking in the late hours. The I.V. lines, learning to stick a child with a needle and hoping the child will not hate them because of the inflicting pain to keep them alive. He knows her tears, her fears, her hopes and he knows the look in her eyes.  He never forgot that look because just like this family, his child was two when diagnosed as well, and that child’s mommy had the same look.  It’s a look of a pain that no one who is not going through it will ever understand, only those who go through it will.  It’s a look never to be forgotten.

But it’s a much different world than it was 25 years.  Many new developments, many new management tools, and the idea that our children won’t live with this disease forever is just a little more believable today.  That older man has seen a lot and has never lost an iota of hope on all of these great things now available presently and hope for in the future.  The older man also knows that this disease surely sucks whenever it strikes and that has not changed one iota either.  But the older man understands L’s mommy.  That family reminds him why the drive must stay alive and must stay important until one day the disease is no more, as it was the day he became involved. He wants L’s mommy and daddy to know this with all of their heart.

The older man believes this with all his heart as well, because he remembers it all.  I know this because the older man is me.
I am a DiabetesDad.
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Everything is Not Always as Appears

rooftop 1As many people know,  I spend a good deal of time up in the air.  Traveling is a part of my job and as I travel to so many places, I share that “I have to do what I do….I am driven.”   For my two kids with type 1 diabetes (T1D), I will travel anywhere I can to try to make a difference.  For the many people with whom I interact, they do what they do because of the goodness in their heart and I’m moved by so many, so often.

Many times people will ask me about ‘something’ in the news that has garnered headlines and being touted as something……..in truth…….it is not.  I do not remember the words “fake news” until fairly recently and in the diabetes world, make no mistake……it exists.  Now there is a difference between varying philosophies and stories; that are just made up.  Treatments, elixirs, truth, and fiction all must be treated with caution because the plain in simple truth is because ‘someone’ says it……does not make it so.

So the picture above looks like it was taken at 38,000 feet from a plane and clearly, you can see the two metal structures that sit in the middle of the dense trees with various amounts of clearings mixed in.  Flying overhead one starts to think about those structures and what could be their possible use in the middle of such a forest?

Well, truth be known, the picture above was not taken from an airplane and, in actuality, was taken from my hotel window.  And it sits upon a rooftop.   Really my only and simple point is this; not everything is as it appears to be and in these ever and changing days, nothing can be taken at face value without checking facts.

It’s up to each and every one of us to make sure what we hear and learn………is truth. Because sometimes when people are shouting from the treetops, they’re doing nothing more than screaming from a ledge.
rooftop 2
Think about it.
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The Juice Box on the Nightstand

Juice boxOh yeah……diabetes……that?……yeah; no—-it does not go away.  Kaitlyn came to visit with us last weekend.  If you don’t know my daughter I will let you in on the fact that I have stated a million times; that she is the type of person who honestly becomes excited when opening stocking stuffer gifts at Christmas time. She just loves life and her love for life is infectious.  Always was……..and hope it always will be.

Kaitlyn was in town to shop for a wedding gown, which she did with her mom.  Her excitement was evident and off they went.  When she speaks of Andre, her fiance; what’s new at work; or her wedding plans……..you feel all she feels as all of the excitement just shines out of Kaitlyn.  When you say her name to people, they usually smile.  Kaitlyn does that to people.   Just like her mom.

We have always taught our kids that wherever they go to leave te place better than when they arrived.  I dropped her off at the airport and returned home. The house surely felt a little emptier than it was just hours before.   As I ‘busied’ myself I went into Kaitlyn’s room and saw the juice box as I pictured it above,

I sat on the bed and cried.

It served as a reminder that the work we started is not done.  It cannot BE DONE until our kids are cured.  Kaitlyn has been out of the house now for years, and yet the juice box that remained, served as a stark reminder that no matter what she does; no matter the successes she has at work, in life, and reaching personal goals the fact remains that she crashes through diabetes ‘to get it all done’ and it reminds me yet, again,  she still lives with the beast that moved in when she was just 2, over 25 years ago.  I’ve not forgotten and, surely, neither has she.

So when people ask me why I’m still ‘at this’ with the same energy I’ve had since day one, my answer is simple……because I hate the juice box on the nightstand.  Always did, always will.  When the juice box goes away…….I’ll take a break………not one second before.  Because I promised her that on September 26th, 1992……and that promise is sill as strong on May 18th, 2017.  We will get there baby….daddy promises.  Still.  Kknn.

I am a DiabetesDad.
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A Controversy Over a Defiant Little Girl……..Why? The Diabetes Community Surely Understands.

Fearless BullI was in lower Manhattan this week for a DRI Event (which was wonderful) and across from the front entrance were two famous artworks that have become the fodder for many who like to create, said, fodder.  “Charging Bull” has enjoyed the spot for some time since 1987 when Arthur DiModica dropped (literally) it off in the dark of night as a gift, but for the past few months, the spot is now shared……..and may it stay that way forever.

State Street Global Advisors commissioned artist, Kristin Visbal, to create ‘Fearless Girl” to stand opposite the raging bull in defiance to the powerful breathe and force of the overpowering dominant animal, with the meaning that women could stand-up to, and in, the male-dominated financial and corporate world.  I had heard about this artwork and decided to have a picture taken with it/her.
fearless Girl

But before I did, I stood back.  I love art and I wanted to see what was going on.  I knew there was ‘some hubbub’ out there about the two artworks but really did not pay it much heed.

I looked at the two artworks, I watched individually at first…and as a unit together. Both in their own right say much to the observer……..and clearly both can stand absolutely alone.  How do you change a meaning of one huge animal artwork bearing down on anything in its path?  Place a little girl in front of it with hands on her hips in defiance of any intimidation whatsoever.

In my observation, the artwork of the two pieces as one statement is a million times more powerful than standing alone as two separate pieces.  Both could stand opposite many artworks and have a different meaning but these two are now linked forever as much as any other pair who came together for destiny to serve as the glue for all time moving forward.  Lewis & Martin,  Branca & Thomson, Hamilton & Burr, and now Fearless Girl & Charging Bull.

But, as those who know this column can imagine, I did not see that little girl as a female standing up to the male dominance that she defies as the artist was commissioned, no, I saw a different meaning and as any observer knows about artwork, that is well within my right as much as the artist’s intent.

I saw I guess my daughter, but really all kids who are diagnosed with type 1 diabetes. The defiance is loud and it is clear.   The power of diabetes (the bull) thinking that it will have its way with any child but yet, in their little bodies, they stand to stare the giant down.  Defiant, confident, proud.  “C’mon, you beast, you will not win.”   In all of the rumblings about these two artworks, I saw one artwork.  I saw our children standing up to something so much bigger than themselves…….and winning.

Please feel free to see what the artist’s work was meant to represent but also understand that art can mean many things to many different people and can be as different as the person who views it.  One thing is clear, this little girl is fearless no matter who she represents……..and THAT……..is no bull.
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This is Really Cool…FRIDAY is Superhero Day…SHARE SHARE SHARE

T1DSuperhero

Anyone who knows me knows that I’m more interested in battling diabetes, and NOT battling each other.  It’s why on many occasions I’m more than happy to share something merely because……well…..it’s cool; no matter who the person, organization, and/or entity is who came up with the idea.  If it’s cool…….share it.

Today, my wonderful and talented colleagues at the DRI(F) have come up with a Superhero idea.  It has always been my contention that as wonderful as so many celebs are in the diabetes world…..they are not the only heroes.  So are the kids who live their lives to the fullest and doing it with T1D and doing it every day right in our homes, hometowns, and schools.

A #T1DSuperhero might not be able to leap tall buildings in a single bound, but those with type 1 diabetes take on heroic actions every single day to conquer the challenges of living with the disease. On Friday, April 28, join the Diabetes Research Institute Foundation in honoring all the T1D superheroes–those who live with type 1 diabetes and the families, friends, and caregivers who support them.

Help raise awareness for T1D and the need to find a cure by changing your profile picture on social media to this special #T1DSuperhero graphic.

Download the free graphic here and change your profile pic now!
Also get a sneak peek at our new public service announcement, featuring our very own T1D superheroes–our DRI scientists who are working to find a cure. You can be a #T1DSuperhero, too!  There is also a really cool superhero video on the page as well. So if you have, or have a loved one with diabetes, change your FB page for tomorrow, Friday, Superheroes Day.

I am a DiabetesDad.
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A Loss of a Daughter—-One Man Teaches Us that a Broken Heart is NO Reason to Stop

A closeup image of a broken heart.

Stacy Joy Goodman passed away in her sleep last night.
Those were the words as they were relayed to me 23 years ago, this date, and it still shakes me to this day. The world outside of diabetes, was not too unlike it is today. Nelson Mandela became inaugurated, a President visited other countries, the NY Rangers would win the Stanley Cup, and new shows entitled ER and Friends would debut.  The world continued.  But within this local diabetes community, the world changed forever.  Stacy was 17 and had type 1 diabetes.

We were only into this ‘diabetes journey’ about a year and a half.  I was very new at an organization called JDF (now JDRF) as their first Long Island Executive Director.  The volunteer leadership involved, who hugely intimidated me with their business successes, I knew I was in way over my head.  Me, as an ‘Executive’ ANYTHING seemed silly at best.  I was 35 and this ‘fundraising for diabetes’ was so new for me. Geez Louise, I was an actor, not a fundraiser.  I had done some fundraising in my life and surely got the knack how to get things done, but THIS, with the passion and the huge amount of these wealthy individuals, was so very new to me.

Since that time, many of those very same people became my closest friends in this fight.  But in 1994, the day Stacy Joy would pass away, we would all be crushed.
There was no instant news across the world via any social media.  If something happened it either happened in your back yard or it took weeks before you would even hear of something like this.  This did not happen in our backyard—-it happened right inside our house.

This was new to me, the realization that this disease could actually take a life.  ‘Things’ that happened would happen to others, much older, not to us….our kids involved in the chapter were 17, 15, 22, and (at the time) mine had just turned 4, and having diabetes since she was diagnosed at age two.  But not for a second did I ever think this disease could actually take a child……or that it WOULD take a child.

Stacy’s mom was the Chapter Co-President.  Her dad and his wife were out-of-town. There was screaming, sadness, and tears………oh so, so, so, many tears.  A short time after the funeral I remember sitting at my desk.  It was about 8:30 pm and everyone had left the office hours earlier.  I was staring, staring straight ahead.  Tears rolled down my cheeks.  I. Was. So. Angry.  A realization came to me in a two stage thought process; it was clear to me now that this disease could take anyone it wanted.  Anyone.  The second thought process was that there had to be an equalizer in this disease.  I had to do more for my own education and to try to bring people to the table who could help end this disease forever.

Somewhere out there was Stacy’s dad.  Our roads had crossed minimally at best.  This is where all of our worlds were changing because Marc began a mission.  His daughter had a strong liking for the medical field.  Marc was determined to find the best place that was on the receiving end from the organizations out there.  Who were they funding and why?  He literally searched the globe.  The many organizations raising money to fund research were great but Marc wanted to be where the science was occurring and who was the best at it.

It was a time where one did not just ‘google’ anything—-one had to visit in person.  And Marc and his wife, Esther did just that.  Again, again, and again.  Stacy deserved that effort.  They landed at the Diabetes Research Institute at the University fo Miami.  It was rare (still is actually) for a place to be single-focused on curing type 1 diabetes.  But that was (and still is) their mission.  Their goal.

But the point of my story today is about Marc (and his wife Esther).  Over the years, whenever it seems that I’m overwhelmed, I think of them.  On this date, 23 years ago, they could have disappeared, who would have blamed them?

But they did quite the opposite.

They threw themselves completely into this battle.  A battle that would have absolutely no chance of helping their daughter.  But to provide the hope that one day to create a possibility where no one would have to undergo what they went through.  To be given a hope that some place was out there completely driven to accomplish their single goal to cure this disease.  Marc and Esther joined the (DRIF) Board and stayed with it until he was Chairman.  And when he was done in that position, he stayed with it still, going back on the board.  And still to this day he serves.

But yet it’s Marc’s eyes when he talks about the things that might have been for Stacy Joy, and when he looks you straight in the eyes and says, “We will change this.”  And he believes today as when he first started his mission shortly after Stacy’s death …….and one will believe him.  Because when one hears his story and what he has done to advance research forward and what he has done with absolute sorrow in his heart…..well that will humble one…….right down to their very knees at night when they pray.  I know this because I am one.

I was there the day Stacy Joy passed and I am here today for my kids…..and when I ever need a reminder I merely glance over at my good friend Marc Goodman, who reminds me as he continues on his journey, reminds every researcher, and reminds anyone else who is in this fight………that actions speak louder than any spoken words and Marc’s actions have shaken this very diabetes world still to this day…….and we are all better off for it.   But to thank someone who has lost so much seems futile to me; to do it to Marc, or Esther, or Jane, or Michelle, or Bob, or Jen, or anyone else who has lost their child…..seems so empty; so I honor all fo them every day the best way I am able, by staying at it with every ounce I have……..it’s the absolute least any of us can do.
I am a DiabetesDad.
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No One Wins if No One Plays……Where Are YOU?

Clock nothingI had the opportunity, recently, to be in Washington DC.  I love Washington DC and it is one of the most exciting places on earth.  So much happens there and whether you love or hate whoever is in office does not change the fact how much occurs on any given day.

While I was there I had the opportunity to make an observation.  In just a matter of days, nurses, unions, fire-personnel, medical first responders, and students were “charging the hill” to have the opportunity to express to their elected official how important their issue was.  It was an attempt to make them hear about a certain legislation that needed to be voted upon one way or another.

There were thousands of people from each group I just mentioned.  Thousands.  All going up the hill at the same time.  Now just on those four days, whoever would be on the receiving end of whatever had to be said……..received an earful.  A BIG HUGE earful.  That was just those 4 days.  Now multiply all the days in session.  That is a  lot of meetings.   That is a lot of voices.  That is a lot of people.

So what makes you so sure your voice gets heard?

You get all ‘gussied-up’ to look your best.  You have your notes.  You have your heart-breaking story.  You have your photographs.  And you have the ask you want to ask.
Well so do hundreds, if not, thousands of other groups.  Different day.  Different group. You climb the ‘hill’, you meet, you take a nice picture, you may even get a memento to take back……..but what makes your story THE story that representative will remember? How do you know?

In truth, you don’t know.

We never know.  But doing nothing will get you just that…….nothing.   If you say nothing you most assuredly will get just that so when nothing happens because you did nothing you will never be surprised…..will you?

So when nothing gets done…..now you know.  So what will you do about it?  I leave that to you but it’s my guess that if you want a better future for your child, Just Don’t DO Nothing.

Yup, I’ve said it before and I most assuredly will say it again……..because so many movements could use……………………………….you!

I am a DiabetesDad.
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Stop Screaming at Yourself Over an A1C

ScreamingSomeday it will dawn on people, and I’m not sure when or how, that the blood glucose numbers one deals with are not numbers of judgment and if you allow them to be….well then you will have to deal with them.
“OMG….what a horrible number.”
“How did I let that A1C get so high…what kind of parent am I?”
“Just got a bad report, her A1C was 9.0……bot did I get an earful.”

Seriously?

Hear me and hear me loudly——there is a huge difference between a gauge and a report card.  We always and in all ways looked at A1C and other diabetes’ numbers as gauges to help us rectify whatever situation we were in.  We never got worked up about the numbers and I see no reason why that should change especially if there is such an incredible effort to do one’s best.

When an A1C number is high, figure out why it is, and adjust accordingly.  Not with a self-lashing or belittled approach by anyone else (including your Doc).  The number is 9.0 and that seems a bit high.  Why is it high?  What do we need to do to lower it?  Is there anything that can be done differently to lower it?

Nothing more……..nothing less.  A gauge.  Correct and move on.  Period.
’nuff said.
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NEWSBREAK: CBS This Morning Reports on Insulin Costs, The Players, and the Lawsuit

CBS This MorningAs I wrote/reported recently on the story in Diabetes Daily, there is a lawsuit pending against the insulin companies regarding collusion on insulin pricing of late; and I also have stressed on how all parties need to react and must come together (read it here).  Today, on CBS This Morning, they report the story in more detail.

What I would like to stress about this story, is as I have also stated countless times, it is touched upon here in this report but do not just gloss over it.  At the end of the report, the reporters discuss how much finger-pointing there is going around—-THIS IS SO CRUCIAL because the finger-pointing will continue as long as ALL OF THE PLAYERS ARE NOT SITTING AT THE SAME TABLE AT THE SAME TIME to fix this problem.

It also will not matter what national health plan is in place, and do not be led off the path of what is important:  ALL PLAYERS MUST COME TOGETHER OR WE WILL BE IN A PERPETUAL, AND UNENDING, CIRCLE FOR YEARS TO COME.

THIS IS WHAT WE MUST ASK OF ALL THE PLAYERS……TO COME TOGETHER.

Here is the story on CBS This Morning.

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A Year from Today I will Give her Away………But I Wonder One Thing……………….

kaitlyn-jobExactly one year from today I will do something and it will be the only time I will ever do it in my life.  I will walk my daughter to the front of where those closest to us will have gathered and I will shake a young man’s hand, and I will put her arm in his…..and I will take my seat, next to her mother.

And she will be married.

The one-year countdown begins today.

I probably won’t write about that often but lately, I have thought about it a lot.  If you know anything about the journey we have been on, it started when fate/life through us one nasty, nasty curveball.  At the age of 2 (2 years, 5 months and 21 days to be exact, but who was counting) she would be diagnosed with type 1 diabetes.

Our lives were shattered.

Our lives would never be the same.

Of these two statements, the first one, we decided, would be short-lived.  There was no room for ‘shattered’ in our lives.  We did not have the time, and we certainly did not have the energy, to live life as if we were a shattered pane of glass.  Shattered is just too hard to put back together again.  So we chose work over giving up or giving-in.  We chose that—-all of us; being the ‘we’.  As a family.  As one unit.  As a drive to never lay down to this disease.  We would do it together.  It would knock us….but we would move on, and move on stronger.  We would try never to stop.

And we never did.

There were so many things ahead to do in this ‘daddy’ thing.

There was silliness needed when tears came along; there was strength needed when fear came along; there were feet to stand upon when dancing was in order; there were daddy-daughter dances to go when the time was right; there were dance nights to attend when the recitals were due; there were accolades to attend when the merits were earned; there were 50 cents to give when deli pickles were bought; there were two-wheelers to do when the training wheels were off; there were Santa Claus and Easter Bunny pictures to take when the season was right; there were butterfly kisses to give and night-time prayers; there were butterfly kisses and a good night song.  There was just too much to do.

A year from today she will be walked down the aisle. We have been through a lot and we have walked together through many things her and me.  A real lot together, all of us.  And we will walk down the aisle together.  I will shake his hand and place her hand in his.  He’s a good man.  He’s a strong man.   A tear rolls down my cheek as I ask myself on this day, one year prior to her becoming his wife:  is it still okay if she always remains my little girl?
I am a DiabetesDad.
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