a 17-Year-Old Who Would Have Taken Action Over a Blue Candle

Stacy GoodmanTwenty years ago today.  Diagnosis?  Worse.

It was a Monday. I was the Director of the (at that time) JDF (now JDRF) Long Island Office.  For a chapter that was not in a major city, we were hugely successful with one of the most successful chapters in the country.  The volunteers (and many, now, lifelong friends) were hugely dedicated, driven, and determined to make a difference.  And did!
There were no FB pages, internet, instagram, twitter, or cell phones in everyday use.  We called each other on the phone.  Pumps, five-second glucose readings, CGMs—no, not yet; and a new building was opening in Florida called the Diabetes Research Institute—all showed promise.  Good things were ahead in the diabetes world.

Stacy came into the office Friday, I had drafted a letter (for/from her) that was being sent to a group playing at Jones Beach in an upcoming appearance in their concert series.  She wanted them to say something about diabetes in their upcoming concert.  I drafted the letter and while her mom leaned on the horn for her to hurry up; Stacy ran in, looked at the letter, and stated she would come in Monday to ‘fix it’.  Stacy never walked anywhere, she flew.  Her energy was incredibly infectious and always, the future-pediatrician-planned-high-school-student would say, something more could be done.  Her name suited her; Stacy JOY.  She was a direct young lady and called them as she saw them.  An old man of 35 was not going to cut-it writing a letter for a 17-year-old young lady.  She would fix my draft on Monday

Back to the day-Monday, April 25th 1994: I asked Hedda (our administrative assistant) to call Jane (Stacy’s mom and Co-President of the Chapter) and find out what time she and Stacy would be in later in the day.  A few short minutes later I heard screaming and wailing that was so deafening that I remember to this day as real as ever.  Hedda could not control herself; Stacy was gone.

I was at ‘this diabetes thing’ for just a year and half.  Gone?  What do you mean gone?  Now, again, remember there was no instantaneous….anything; twenty years ago.  I had heard people could die from diabetes, and I was sure it may have happened……somewhere.  But here it was, right next to me.

The earth shattered that day.  It woke me up to something I could never have expected and it changed my life forever.  This ‘dying’ was just not acceptable to me.  As the world became more and more connected, I would hear, with more frequency, that this could happen and does happen; rare as it is but still just as unacceptable as it was twenty years ago.

The result of that day would change the diabetes world forever because Stacy’s dad, Marc, along with his wife Esther and two good friends would begin a journey that would include funding diabetes causes, building a cabin at Stacy’s diabetes camp, and begin a worldwide search to find their best hope for a cure.

After, literally, a world-wide search they decided that the Diabetes Research Institute was worthy of their time and resources.  The next few years would establish the DRI as a worldwide powerhouse in research to cure type one diabetes once and for all.  Marc, and their Stacy Joy Goodman Memorial Foundation would give millions of dollars and all four of them would become board members with, for a time, seeing Marc as the National Chairman.  The research for a cure never moves fast enough but under Marc’s tenure the DRI would become a worldwide powerhouse of collaboration to the one goal of curing type one diabetes.

Click here to hear Marc’s words about his daughter.

Marc’s efforts would lead to the hope for so many of us that a cure could be possible.  His efforts continue today.  He will be the first to tell you the long list ahead of him deserving of the credit; but that’s Marc.  The apple did not fall far from the tree.
In all of the years since that April 25th, I constantly remind myself of this incredible family and their unyielding efforts to change the world.  If they work so hard with only a memory to continue; who are we not to give that much more who have so much more to gain.  We cannot live in this fear but respect it.  It is there but should not control us.  We must LIVE.

And when the band New Kids on the Block played their venue in 1994, before one of their hits, they announced they were dedicating that song to the life of Stacy Joy Goodman.

It is in the living we move on……….to this day and until a cure, because Stacy wanted it that way, she lived that way, that is how I will go about it.

You are loved Stacy, and always will be.

I am a diabetes dad.

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

(Disclosure: I work at the Diabetes Research Institute Foundation—-but as I have stated a million times; if anyone knows someplace better where all forms of research happen in one building, collaboration is how they operate, and they have the single-minded focus to cure diabetes—-let me know because I would give my energy there instead)

They Go Through the Bad as Well……..WITH Diabetes.

Flip sideWhen is enough, enough?  It just seems to me that the resilience and positive-ness of our kids gets tested time and time again………and again.  Our kids, sometimes, seem to bounce-back from almost anything.  I once wrote an article that referenced the fact that all of the accomplishments are our kids have done, always seem to come with an asterisk; because they accomplished whatever they did, all while having diabetes.

That is an important fact to remember while they achieve such wonderful things in their lives but there is a flip-side to this as well.  Unfortunately, the flip-side can also impact their blood sugar as well as their psyche.

I am speaking of more than getting through the flu, or an illness that comes and goes.  I am speaking of hardships.  We must always remember that the hardships our children go through also come while they are dealing with diabetes.  Spouses/partners should know this about their mates with diabetes as adults as well.

The loss of a job, the operation that goes wrong, the miscarriage, getting ‘cut’ at tryouts in school, school-in-general-and-everything-that-goes-with-it, dealing with a death or tragedy, failing at something, being diagnosed with an additional ailment (celiac jumps out at me but there are more), and anything else that is part of life–for those with diabetes is different from those without.

The impact is different, the caring for is different, and we (all of us who care and love those who have diabetes) must be cognizant of this fact…….always.

My article today, is but a mere reminder.

I am a diabetes dad.

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

Voices to be Heard…….This One Will Make You Think!!!!

megaphonePlease read each one of these, I have copied them exactly as written:

“Nobody should have to go into a bathroom to……”

“………you don’t want your kids seeing that because you have the daunting task of explaining…..”

“……She could have taken him to the car……”

“…….find it irritating to read many of these moronic comments……
…….It’s sad and downright pathetic that too many others can’t get it,……”

“…….. Do you see the DIFFERENCE? Don’t just spew out nonsense if you don’t actually know how it works…..”

:……..You know whats awesome about this topic? That none of your ignorant opinions matter…..”

“Lord help the person who says an unkind word to me for……..”

“…….There is no waiting when you have a crying hungry/scared………”

“……..this shouldn’t even be an issue……”

“ I’m so sad reading these ignorant comments. No one as a country we suck when it comes to………”

“What a sad world & pitiful society.”

‘……… and it is your right to cover your face if you can’t deal.”

“She was in her car waiting for police to arrive the article states. Would the officer rather she…….”

“Your insensitivity is exactly what I am talking about (name of person), thank you for demonstrating for me.”

These comments were taken from a FB conversation last night.  Do the comments look familiar?  Diabetes?  No.  They are all regarding breast-feeding in public.  The point is that there are many, many issues in the world; many, many great voices out there; and many, many worthwhile causes.

Here is something everyone can do; go to Get Diabetes Right (click) on FB and place the posters YOU LIKE in the area where you live.  Don’t just do nothing!!!!!

To our government leaders, our friends, the media, the public, and anyone else who we want to hear us.   How loud do you think we need to be; to be heard?  Think about it.

I am a diabetes dad.

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

The Conference Made For College Age and Young Adults—–SHOULD NOT BE MISSED!!!!!!

SWD   Click this picture to see highlights about a conference that any and every young adult SHOULD NOT MISS.  Students With Diabetes (www.studentswithdiabetes.com) is dedicated to creating a community and connection point for young adults with diabetes ages 18-30 on both college campuses and in local communities across the country.  The national network includes education, programs and opportunities for young adults living with diabetes to facilitate their transition into this life stage and help foster personal, social and professional development to ensure a successful life with diabetes.  Students With Diabetes was created as part of the Bringing Science Home project of USF Health, directed by Nicole Johnson, and supported by a generous gift from The Patterson Foundation. (Supplied from their website).

Every year SWD holds their annual conference. The 2014 Students With Diabetes National Conference will be held in Tampa, Florida from Friday, June 6 through Sunday June 8, 2014.  They have created an amazing schedule highlighting the latest in technology, research, great speakers who will help us learn new ways to manage our diabetes and many opportunities to connect with other young adults living with T1D and have lots of fun.

Just  $95.00 pays for the conference, the hotel, most of your meals, and I hear through the grapevine that actor Jim Turner is giving his one man show (an incredible event that will make you howl, gasp, and realize YOU ARE NOT ALONE—Jim has T1 and he calls it EXACTLY how it is).  Jim Turner’s one man show is a must-see for anyone living with diabetes.

If this is YOU:
* Young adults living with diabetes between the ages of 18 and 30(ish)
* Type-3′s or the significant others, friends or family members (ages 18-30(ish)) of a person living with diabetes
* Young adults living with diabetes that want to network with other T1D’
* Young adults living with diabetes that want to learn about the latest diabetes research and technology
* Young adults living with diabetes that want to new and unique ways to manage their diabetes
*  Young adults living with diabetes that want to have fun in a safe environment

This is a MUST weekend.  Click here for details——DO NOT MISS THIS INCREDIBLE OPPORTUNITY.

And please share this link with anyone and any sites that have T1 young adults from 18-30(ish) that you know.

I am a diabetes dad.

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

 

 

 

WHEWWWWWW…….Glad THAT Family Holiday Gathering is Over!!!! Sound Familiar?????

whewIs that what you said when the day ended yesterday.  If Easter is a holiday in your house; did you find your self saying last night, “WHEW!!!!–another holiday and relatives done; with diabetes?  Thank goodness.”  Did you say that?

I remember clearly that holidays used to always add that added stress which was twofold.  1. Watching everything and anything that was within grasp tat would be/could be eaten.  2. What would someone say that would just make me cringe and grab the chair with my fingernails?  Being shown another article about what we had done wrong.  Another cure in spices found in China.  Another conversation asking if Kaitlyn was any closer to ‘growing out of’ diabetes.

So what changed?  We learned over the years that most questions (emphasis on MOST) came out of genuine concern, and/or caring.  Sometimes you have to look beyond the words and understand the meaning.  In many cases, I have learned in the 21+ years we have been to parties, family gatherings, and get-togethers that whatever is said is said in concern and/or the nervousness of not knowing what to say.  In most cases it falls into these two categories.

Once this is understood, we were better off and so will you.   Even if it is said a hundred times and you answer the same way a hundred times, I have found, it is concern or just not knowing what to say.  Hard to believe but I have found it to be true.

I could be wrong.  But in our circumstance, I was not.

Here is the exciting part, now the ball is in your court.  You are the one who can decide how the statements impact you.  You know it is coming, it comes in every gathering.  I decided to not answer the same way…….but answer the same way.  When asked, “Will she grow out of it?”—-for the millionth time if I just got angry and stated ‘no’; I decided to try changing it up.  “Let me answer your question with a question, do you think she will grow out of it?”

I said this in a perfect conversational mode and the answers were bountiful, but each time it resulted in more of an education than me just answering ‘no’.  I also knew that the conversation should not be a long one and it wasn’t.  In almost every case I was not asked again.  It worked.

So instead of answering; “…….unlike you; where there is a cure for stupid…..”, (which I wanted to do AND often) I found a better way to answer.

There are so many family gatherings and get togethers and I just did not want to go through ANOTHER ONE where my stomach did flip-flops until the time I left.  Now this article today will not all of a sudden make it better for you; but start trying a few things instead of just getting angry next time you are together with family.

We live with enough day-to-day stress living with diabetes………visiting family SHOULD NOT be one of them.  Try it in the future and let me know; and if YOU DO SOMETHING NOW please share your helpful hint as well.

And if there is THAT in-law who IS JUST BEING MEAN; well ‘bop’ them in the nose to get your point across.  That will add more stress but you’ll feel better in the short-term.

I am a diabetes dad.

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

Happy Easter—Happy Spring. A New Beginning Can Start…………..Now.

Easter Flower crossEaster.  My faith tells me that on this day my Lord and Savior not only died for us, but rose from the dead.  It is the basis for all we believe.  To me, I have always felt that Easter was a newness for everyone.  If not the holiday itself, but because of the season it happens; Spring.

Not everyone has the commonality of my faith, but Spring does spring eternal and with everything coming to life after a long, cold winter the season comes with ‘this newness’ to start over again, doesn’t it?

So I decided to ask you today; how do you start over again?  I jump out of bed practically every morning knowing that the day brings with it, something exciting that I have yet to find.  Well not every day, as we all know that life’s ups and downs can impact us one day to the next.  But most days, this is how I approach the start of expectations.

But we cannot possibly live life as if the world around us crumbles…..at least not live like that every day.  At least, I hope we don’t.  A million times I have stated the line from Shawshank Redemption, “Get busy living, or get busy dying”.  But when you are at the crossroads….what do YOU DO to be positive?  What do you do in the morning that says, “Enough!”?  What do you do when it is time to begin again…..for your family…..for yourself?

So for Easter being tomorrow, and the Spring days ahead if you believe differently than I, please share with those who just cannot shake the pitfalls of diabetes; share what you do to begin again.  To begin over again for the millionth time, to look through fresh eyes, to bloom in positive-ness; what do you do?

Please share so others can take that step.  Happy Easter and Happy Spring everyone.

I am a diabetes dad.

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