A Mom Loses a Son…….”23″ a Number that Means Much On This Day.

Jesse was here  MichelleSix years ago today was a normal day for just about everyone else in this world, with the exception of Jesse’s family.  Jesse passed away six years ago today.  If you ride in rides and/or if you are active in the diabetes community, chances are you know that there is a meaning behind “2/3” or shortened to just “23”.  The 23rd mile, in memory; stop at 23, 23 has become a number to make us all reflect.  To remember……and move on knowing we can foster change.  February 3rd has come to mean something in our world….but none of us wanted it, least of all Jesse’s mom, Michelle.

Michelle will find a corner at some point today and reflect in a way she needs to, what Michelle will NOT be doing today, is sitting home by herself.  When she lost her precious Jesse on that fateful day Michelle made a decision, she would make sure he would be remembered in all of the efforts in which she would continue.  She does that……for my kids, for yours, and for you; if you live with this disease every day.

Continue indeed.

Michelle is a friend.   In her shoes, I’m not so sure I could do what she does.  She has always been involved in the diabetes world but after Jesse passed, she became a powerhouse.  Almost as if a higher power reached into her life and said others need to know about what is important……if not a higher power, an angel perhaps……..indeed.

Whether it’s Riding on Insulin, educating through lectures, meeting elected representatives, riding to raise money for a cure, supporting those who have gone through what she went through—–Michelle is tireless in her efforts.  She has not stopped in her drive to make sure what happened to Jesse, does not happen to others.  She is ‘out there’ doing, when most others would close off their life……and no one would blame them.

So on this day I remember Jesse.  But when I sleep tonight and I say my prayers I will also thank God for my dear friend Michelle.    She is a lightening rod, she is a powerhouse, she is driven, and above all else……..she is a mom.  A mom suffering the greatest of heartbreak and yet gives of her self unceasingly…..for others.  Because that is what moms do.

I am a DiabetesDad.

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

Not Everyone WILL EVER Care……Reality!!

careIt was an absolutely horrendous night.  I need to share this so people know what my life is like………………………………………
Do people REALLY need to know what my life is like?  I get that there is misunderstanding.  I get that people could know a whole lot more; and would make my life easier.  But do I care about their life so much that I want to read about something I do not understand.

Our lives are so crucially important………………………….to us.  My mother once told me “What is important to you is not as important as you think to others”.  I never forgot that phrase and reminded myself many times.   With some exceptions, I don’t write thinking that someone, who has no idea about diabetes reading about my life, will all of a sudden have an epiphany.  My articles are more to encourage those already on the journey.

Our lives are truly important…….to us.  If you know someone with MS, Lupus, Cancer, Autism, mental health disease, heart disease……..and/or in any other disease-state, how much interest outside of our own personal involvement do we actually have……or even need to have; or perhaps (be honest) even WANT to have…….really?

It’s not that we do not care, we do.  But are we fully aware of the person going through chemo spending hours of sickness; or a person with MS having to have each and everything done for them because they cannot do it themselves; or a person in intensive care losing a recent battle with depression……do WE ACTUALLY know?

To be clear, there are those that probably should make an effort to know more than they do.  That’s a point well taken.  That said, be very careful on where you hold expectations regarding your own situation.   Something else I learned at an early age; it’s better to be surprised than disappointed.  Expect little, you will be surprised more times, than you will be disappointed.

I am a DiabetesDad.

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

 

Painting Parties…..Things Seen SO Differently……Not Unlike Diabetes.

Painting partyIt’s been ‘all-the-rage’ for some time now.  A group of people get together in a social atmosphere (translation: wine is served) and look at a painting of some kind and try to duplicate what they are observing.  Mind you that all participants are looking at the exact same art work when they proceed to reproduce it……..as theirs.

We had one at our house recently.  Not sure who thought of this social event or where it started but it’s a grand slam and it’s becoming increasingly popular.  Now as I saw the finished products, of which just a few of the many are shown here, I could not help think how hard it was for me to believe that people were looking at the exact same painting.

But the art instructor was quick to point out that art is subjective.  It’s what the artist sees which means there is really no ‘right answer’.  I find a direct parallel to these art works and the different things people believe in our diabetes world.

Whether it’s a way to manage diabetes, an organization believed in, a form of research, or how one faces diabetes on a daily basis……..each and every person does it differently.

But is diabetes subjective, like art?

That’s the question I kept asking myself.  In as much as I can truly appreciate when someone paints something and has a point of view; It does not change the fact that what is painted does not necessarily come anywhere near the original.

To me if the art work being looked at is to inspire one to paint, then there is not right or wrong answer.  But IF one’s goals were to duplicate it, and it looks nothing like the original, then the objective was probably not met.  I’m pretty sure in the context of these evenings few are out to fully duplicate the painting exactly and I AM NOT here to say that people are getting it wrong.

What I’m saying is that in as much as one may like and be comfortable in the way they are dealing with something, if it’s supposed to be done a certain way based upon scientific fact (know this key phrase) and it’s not; it’s wrong.   No matter how comfortable one feels about.  Recently I met a person who has T1D and he was telling me that he checks his blood sugar once a day, he needs to do it no more.  Now as much as he may be comfortable in doing that (as my friend Jeff Hitchcock says, ‘show me the science that proves that.’) it’s NOT the way to handle T1D…..science just says otherwise.

In art work it does not matter if 10 people are looking at a painting and some show two clouds and some make it a completely cloudy day.  But there are things in this diabetes world that no matter how many times one does it, it will never make sense to be done otherwise, based upon years of data.  One cannot just go through life with this disease on a wing and prayer.  You can not just do something any way you choose and think it will ‘JUST’ be all right, just because you say so.

I’m sorry but it just doesn’t work that way.

I say this not as a judgment.  At the end of the day you make the choices.  But the plain and simple truth is that one with T1D cannot go for too long without taking insulin.  Now as silly as that even sounds there are other things that people do that have absolutely no scientific data to back up how they handle it………..but the process is thought to be okay to do for THE ONLY reason that one thinks it’s okay.

You can get away with running through a red light a million times……..but at some point disaster is going to hit.  Taking a chance that you can copy an art work can be a fun thing to do and a great evening out; taking a chance dealing with diabetes………probably not.  Diabetes is just not always broad strokes……..think about it.

I am a DiabetesDad.

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

 

Suck it Up. Move On Already. Ignorance…….is Stupid, Yes?

IgnoranceEven after 23 years in the ring fighting this disease, it will alarm me all of my days when I experience people who do not understand our children’s diabetes.  Not the very details of the disease but the bigger strokes, “you should know better”-type.  In discussions over the years, I have come to the conclusion that people believe….and they DO actually believe this……that when our children experience a glycemic reaction (low/high blood sugars) that they get to the point where they can just ‘will’ themselves to move forward.

Really?

Any of these sound familiar?:
(Condescending pat on the head) “You’re okay, c’mon get back out there”.
“Get tough and get back up”.
“Feeling a bit better, okay suck it up and let’s go”.  
“Oh she’ll be okay, let her get it out of her system”.
“Okay it’s been 5 minutes, you can go back to class”.
“I just don’t know why you over-react to this……”
“Really, 5 minutes is enough time JUST get going.”

People?  Amazing, right?

Ignorance, as the saying states, is NOT bliss…….Ignorance is stupid.  I was always taught that if I did not know something, I should ask those who know.  It alarms me when people who have no clue about what this disease is about venture to tell me what their version of reality is in my situation (follow that?).

And if you have a brain between your ears, you should never use the word “JUST” to me when it comes to dealing with my children’s disease.  There is nothing about diabetes that deserves the word ‘just’.  Right up there with, “It’s just diabetes”.

In as much as I have preached to stay positive, to live life to the fullest, to not stop, to not let diabetes hold you back; all of  this is said with the fullest of understanding what this disease is all about.   But when dealing with a low blood sugar and someone who has no clue turns to me and says after the cookie is eaten and the orange juice is just being finished;  “Okay, all good to go now?”

I really just wanted to punch them in the nose.  Don’t you?

I am a DiabetesDad.

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

 

Many Have Given Much; Nothing is a ‘Given’.

challengerI have always loved the concept of space travel.  I built model rockets when I was kid and even did my count-down with my Estee Rockets.  Once I even made it a ‘manned spacecraft’ and placed a spider in the nose of the model and watched with nervous anticipation as it climbed toward the clouds,  I felt the sense of sheer joy and accomplishment when it ‘parachuted back’ and I let the spider go—-back into the grass. Space travel and TV, I watched it all.

Thirty years ago I was living a dream through the eyes of Sharon Christa McAuliffe.  She was a ‘regular person’; a school teacher everyone called ‘Christa’ from New Hampshire, who was being launched into space with six other astronauts in the Space Shuttle Challenger.  She was chosen from a pool of 11,000 applicants to become the first civilian in space.

On January 28, 1986, with eager anticipation, I watched as the Challenger countdown began to launch this ship, which was less than three years old, into its tenth mission of space.  It cleared the launching pad and was on its way; but 73 seconds into flight, it exploded into thousands of pieces.  The entire crew was lost including a very special school teacher.

My mouth just dropped open as I stared at the television in Hempstead Town Hall, where I was working at the time.  Stunned.  Numb.  Thirty years ago today.

My love for space travel taught me a great deal.  The unknown always fascinated me.  This love for space taught me much about the unknown.  I never thought back then that I would need this same ‘love’ of the unknown when I became a father and two of my three children ended up diagnosed with type 1 diabetes.  There is no definitive when it comes to exploring the unknown.  A huge success today can be a set back by failure tomorrow.

I. Understand. Research.

Years later as I became very interested in research for a cure, my space fascination would help greatly.  I follow progression from concept as much as I do human clinical trials.  I watch as heroes who give themselves over for research projects.  I watched in horror as my daughter enlisted in a project and it ‘went south’ as the project began.  The pediatrician stepped-in to stop the process but through blood and tears everywhere, my daughter’s voice to continue the process won out for the project to continue.  It did.  Unless you were there, you cannot understand the pain I felt as a parent.  Her voice of, “I’m not stopping, it’s too important”, will ring in my ears forever.

You see, the hype you may see in newspapers regarding any diabetes science is not always what is actually happening.  There is no guarantee when a spaceship takes off, and there is no guarantee when someone enlists in a research project.  No device ever went from paper to market,  no science regarding a cure will go from concept to completion, without the involvement of those we love living with diabetes playing a role.

At some point, they say; ‘Take me, I have diabetes….learn from me.’  Anything you read about the past, and will read about the future, will somehow involve those who allow themselves, for the benefit of science, to be used and studied.

Devices, cures, and even those who are not involved but have died and their family said, “study what happened here, so others don’t go through what we are going through…”….well in my mind……they are all heroes.  Heroes.   Remember that.  Remember that things do not just happen….someone stepped up so you, your child, and others might have a better life in this diabetes world.

I have known families who have lost children and took that experience to allow others to learn.  Surely of late, we have learned that lesson from Little Reegan’s mom.  They more, than any others, accomplished the same as what President Reagan stated of those Astronauts thirty years ago today; “…….. We will never forget them, nor the last time we saw them, this morning, as they prepared for their journey and waved goodbye and “slipped the surly bonds of earth” to “touch the face of God.”

No research ‘just happens’…….remember that always.

I am a DiabetesDad.

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