What Do You Say to a Newly Diagnosed Family?

Two male hands; one reaching down to assist another hand reaching up with sunburst in the background

To this day it still happens.  The phone rings and we’re informed by a friend/neighbor/colleague/friend-of-a-friend that someone new is diagnosed with T1D and can we find the time to speak to them and/or their family?

Well the answer is…………………..always.

But it’s a fine balance to let them know that they are not about to lay in a bed roses and at the same time share that they should be limited by nothing.
Not everyone stays up all night, but people do.
Not everyone cries every day, but people do.
Not everyone feels as if the wind is sucked out of them forever, but people do.
Not everyone dies from T1D, but people do.

Where is that balance?

I always try to answer the questions they have directly and honestly.  I try to show them, by examples we have experienced or people we know, that they are able to grasp the seriousness of this disease, and also the limitless possibilities that are before them.

I try to educate them about social media and help them realize that everyone handles this disease differently, and that their medical professional is their number one partner with this disease, and that education is always the equalizer.

I try to keep it simple in our first phone call.  Upon diagnosis, as we all know, they’re not hit by a ripple, they’re hit with a tidal wave and it takes time.  They do not need to be fully educated about everything on our first call.  I try to explain that what they need to focus on is their child.  To stay in tune with their medical professional and although their inclination is to run to the computer, they should do so carefully.

This disease has as many similarities as differences from one family to the next.  There is no one solution for everything.  I explain this as best I can.  But I think the biggest help we can ever be is to just let them know that they are not alone.  That they can reach out any time.  That we have been where they now stand and we have made it through. I think THAT is the biggest help we can ever provide.

Being newly diagnosed…….well……it sucks.  But it’s nice to know that reinventing the wheel is not needed and that a friend is always near by.  We didn’t have that in the very beginning and once we had it, those people became some of the closest people to us, and 25 years out; some of those people are now my closest friends.

Those who know need no explanation, those who don’t would never understand.  I’m thankful for the peeps who mean so much to us and have been there, for all these years.

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

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’.

 

More Than Standing on Two Legs……….These Marvels DO It on Wheels……..Be Inspired.

BT1 RidersTo do the impossible.  To march into hell for a heavenly cause.  To do what others could only imagine.  To go beyond the limits.  To go beyond type one.

Twenty riders leaving New York and riding…….riding…..riding……4296 miles to San Francisco.  Some are fairly new at riding and yet, some, are not new to being adventurous at all.  One swam around the island of Manhattan, one rode a long distance in Europe, one even is on the third trip across America.  One is an Engineer. One is a former beauty pageant contestant.  One just wants to bring awareness to mental health and diabetes.  All types; these 20 riders.

They all…………………………are heroes.
For whatever the reason they chose to ride, they all have a purpose in common and that is to break down the stereotypes of having T1D and to reach for a goal that some only talk about……they do more than act……..they ride…….ride across America.

They are stopping in cities all across their 10 week trek from East to West Coast crossing 15 different states meeting and encouraging others who have T1D, meeting with media telling their stories and through it all……….pushing their bodies beyond incredible endurance.

Why?
Because they all believe in living life to the fullest beyond their type one diabetes, and they do not want to just talk about it…..they’re doing it!  Showing the world that they too should and could live beyond their own imagination, beyond restrictions, beyond limits.

The link to their site is below.  Spend some time on it and feel their energy and their magic.  Do something to help them and it does not have to be by a donation, but you can always do that too.  Check out their site.

An amazing group, these twenty riders who choose to show the world that the best way to live with your diabetes, is to just…….live……..beyond.  Spend some time on their site and click here.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Should it Really Be Called………an Artificial Pancreas?

Artifical RealLet’s be one million percent clear from the onset: I, like the rest of the diabetes world, would love nothing better but to see a CGM communicate with an insulin pump for better control and to alarm the world when things derail.  It would, and will, revolutionize the management of type 1 diabetes.  But the more I speak to people newly into this diabetes world of ours, there is an inherent problem I’m finding with what is commonly being called an artificial or bionic pancreas.  In speaking to people at the ADA conference this week my feelings were not completely unique.  Inasmuch as many believe that a good deal of people completely ‘get it’, many also think that others might think this device will be almost like placing diabetes in automatic……and it is this thought of which I caution.

I, personally, hate the name artificial pancreas.  It isn’t.  Now it may be we get to the point of a rose is a rose by any other name but the device, as great as it will be, does not do things that a pancreas does…dispense glucagon being just one (although the plan is that the ‘bionic’ pancreas will some day).  And in looking at ways the word ‘artificial’ is used, even when looking at an artificial heart, does it really fit, as is present, in our diabetes world?

When people think of something artificial, they think of it being as close a substitute to the real thing as possible.  When these devices are hitting the market and ready to go in everyday use they will be fabulous. To me….TO ME (just me, my opinion), I think there is a better name for two electronic devices speaking to each other to monitor and dispense fluid than calling it something that it’s not; as darn good as it may become some day.  Perhaps, Integrated Insulin Delivery And Monitoring System–The IIDAMS (hmmmmmmm marketing gurus just might have a field day with THAT name;  ‘IIDAMS diabetes forever’ catch phrase….hmmmmmmm).

This is just me and I have never stated I knew any answers.  What do you think?  Do you think the name ‘Artificial, Bionic, AP, Electronic, Pancreas’, suits it?   What would you name these devices about to hit the market?
Just a thought I had…..chime in.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Second Child Diagnosed Lottery……..Not the Win Anyone Wanted!

Ping pong ballaDad, I’m peeing a lot.
Thus started a series of events that would end up with my youngest of three becoming our second child diagnosed with type 1 diabetes (T1D).  You can find many statistics about having two kids with T1D and if you get more than 3 sources that agree on a particular stat, and tell you the same thing, kindly let me know.

Chances are slim……….the lottery no one wants to win.  But we surely did.  That was in 2009……and I remember like it was yesterday.   Seems to be happening more if you ask me……..but I have no science to back that, it may just be social media and we hear more about it today than we did years ago.

What I do know, is that it’s not a common occurrence, but it does happen.  The most I have ever heard is a women who claimed she had six kids with T1D……..jeez louise…..a saint I’m sure.

Here are a few things to remember about those of us who ‘won the lottery’ of having more than 1 child with this disease.  Yes, we know the drill but please do not say to us; “At least you know what to do.”
We know this point and it is of little comfort to be reminded about this fact as if that is all we have to be grateful for; the fact we already know about it.

What we are thinking:
“Really?”
“Why would another childhood be taken?”
“Why would life/God/nature/fate (however you believe) be so cruel?”
“Where did ‘fair’ go?”
“I cannot do this.”
“I cannot go through with this…..again!”
“What is my first step?”

What we want to do:
Get life back to as normal as can be as we continue to try to get life back to normal as can be from the first child diagnosed…….did you get that?
DO something with this INCREDIBLE amount of anger overcoming us that we would have to deal with this (place any expletive) all over again.
Balance this balance from the balance of trying to balance the family balance from the first time our lives were thrown off balance…….did you get this?
Find a breathe.

Yes, those of us who have been down this roadway will survive…..because that is what we do.  Want to help, send a basket full of supplies…even if it is juice boxes and the necessary foods to treat a low and where you do not need a prescription.  Send a bottle of wine to a couple with a note—-“Don’t know what you’re going through but find a corner to share this together.”  Do something to comfort because words…..honestly….only help a little…..go an extra step.

There is just so much that overwhelms a parent when a second child is diagnosed…..it is not as simple as a first child and now it is ‘just’ a second child…….unfortunately it doesn’t work that way.  It’s an incredible amount of pain as you realize what you know has just impacted another child.  The first time, we ‘just got through it’ and had to learn so much.  We had THAT distraction. The second time, every single thing we did, we now knew what it meant.  And it hurts.

This disease sucks for all who have it and all who are parents and must watch…..and to some, watch all over again;  and even some, watch more than that.  None of us ever wants pity, we know what we must do…..and we’ll do it…….because whether it’s one, two, three, or even six kids diagnosed with diabetes…….that is what we do.  Because there is no room for diabetes in anyone’s life and we will make dang sure that the disease fights for anything and everything it thinks it can take.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

No Such Thing as Small Actors in the Diabetes World

syringe in handAs is well-known, my last life was all about the theatre, television, and acting.  There’s a saying in the theatre world that goes like this; there is no such thing as small parts…..just small actors.”  I once directed a group of incredibly talented actresses in a production of Twelve Angry Women (which is the female version of the show made famous as Twelve Angry Men).  The show is an intense deliberating room of a high-profile crime where the life of the accused rests in the hands of 12 jurors.  I was fortunate enough to work with 12 hugely talented young women who were fabulous in each role.

I decided to try to make this as real a production as possible and did it ‘in the round’, where the ‘stage’ was in the middle of the audience and the audience could barely breathe as they were so close to the action.  In the production, there was the role of the 12 jurors but there was also a ‘thirteenth’ actor who was the guard who would come and go as needed.  The young actress’ name was Janet and I asked her if she was up to a little challenge?  She agreed.

In the script, the guard comes and goes answering questions, bringing items as needed, and escorting the jurors in and out of the room.  In most productions, the guard exits off stage until needed next.  It was my belief if we were to make this as real as possible, the guard would be posted outside the door.  There would be much down time between times ‘the guard’ would come in and out and Janet had to make the role both real and not distracting from the action ‘on stage’ at the same time.

I could not have picked a better actress.

Janet bought everything from crossword puzzles to magazines, to a bag lunch; she would eat, get up and listen at the door when voices were loud, and she was about as real as a courtroom guard one would ever see.  Any time an audience member glanced toward the guard she was busy…..being a guard. The role was as thankless a role ever written for an actor but Janet got every bit of mileage out of it possible and the audience noticed every night.  There was not one iota of wasted energy in Janet’s performance, who did much with little.

People have contacted me and said over the years in response to my ‘just don’t do nothing’ phrase, “I have no time, no money and no availability to do anything to help others with what I’m going through in my diabetes world”.  My answer has always been the same; if we do not do for ourselves………………….who will?

Just like Janet in her small role, you will get out of it what you put into it.  It does not have to be big at all and what you choose to do is entirely your choice.  But remember this, If you do nothing, nothing is how much you will help.  If something ‘small’ is all you have in time, money, or energy to pursue—-small is more than nothing.  And that small part you play may be huge to the person you help.  Think about it.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

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

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

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

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