Tag: #happysiblingsday

Voices of Marjory Stoneman Douglas H.S………The World Will Hear

Posted on | by tomkarlya | 1 Comment on Voices of Marjory Stoneman Douglas H.S………The World Will Hear

A few weeks after the tragic shooting at Marjory Stoneman Douglas High School in Parkland, Florida, I spoke to the parents of the two young men who have played a huge role in entertaining the crowd at our walk.  You see this family had to deal with their children being in the thick of it all, seeing things no child should ever have to see or experience.  It makes one shutter to think about it.

“So I am thinking the boys would be okay to skip this year……..”
Scott, their father, cut me off immediately.
“Tom, these kids are from Marjory Stoneman Douglas High School, we don’t skip out on anything.  Their little sister still has type one diabetes.  The boys will be there.”

Not only were they there, they crushed it.  One of the boys is our DJ and one is the ‘drone master’ taking pictures in real-time.  They are incredibly talented young men who go forward…..in the face of adversity. They are not merely good…….they’re incredible.

Heroes.

Before my kids were diagnosed, so many already know that my life was the theatre.  Being part of the NYC theatre scene as an actor was my life and even fortunate enough to be in one show for 14 years.  I watched a segment of last night’s Tony Awards, a celebration of theatre, as they introduced Melody Herzfeld.  She is the Drama Teacher for the Marjory Stoneman Douglas High School Drama Club who sat with so many students locked away in her office……staying away from danger.

That got my attention real fast.   A hero.

Every day she teaches students to set their emotions, all their emotions, and release them through the arts; giving all an equal voice to be heard.  As she stated in her acceptance speech as she was being honored; “…….letting the stronger be our collective voice supporting the rest needing time……..wanting to be heard.”

Not only did the Tony Awards Show tell her story,  but they introduced us once again, to some really special kids.  It must be a trait in the kids from this school; they do not just live life with their talents, they make ‘crushing it’, an art form.  High School kids being thrust upon the stage of the Tony Awards is nerve-racking enough, but asking them to sing in front of the biggest names to have ever graced the Broadway footlights is enough to buckle any knees.  But these are not just any kids, are they?  They are the kids from Marjory Stoneman Douglas; a school that does not know the meaning of halfway.  Listen.

Click here.
More Heroes.

So my world of diabetes and my love for the arts both being taught a huge lesson by true heroes, I am humbled.

I have come to the conclusion that this school never does anything half way which may have been the very same attitude that has taught the rest of the world that this school………..does not skip out on anything.  They are MSD kids; MSD STRONG.  Perhaps we should take notice of their voices…….and allow them to be heard.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Everyone has a Choice……Here’s Mine, and Why. Happy Father’s Day.

Posted on | by tomkarlya | Leave a Comment on Everyone has a Choice……Here’s Mine, and Why. Happy Father’s Day.

Diabetes.  On September 25th, 1992, if you said that word to me it would mean nothing more than a disease within a list of thousands of diseases. On September 26th of the same year, the same word impacted my life as none other before or since.

Diabetes.

It comes out of nowhere to wreak havoc in those diagnosed, especially those diagnosed with type 1 diabetes (T1D), which USED TO occur predominately in children.  Now, it hits any age.
No rhyme.  No reason.  Just attack.  Life changed.  Now what?

I never expected to be in this ‘diabetes’ world much less to become an executive associated solely with one of the leading diabetes centers in the world.  It’s too long a story (for another day) how I got here but know this; I’m one fortunate man who spends practically every waking hour trying to end this disease, that impacts two of my three children, with people searching who believe as I do; that a cure will come.

One of the questions I’m asked constantly is if I still believe a cure will come and why is my support so much behind the Diabetes Research Institute?  I do believe a cure will come and before I answer why I believe so much in the DRI, I want to be clear about something.  There are many great organizations out there doing great things in this diabetes world.  I notice, at times, there’s debate within the diabetes community where financial support should be directed.  My answer has always been the same.  Do your homework, and YOU choose which one best fits your needs.  I respect all those who choose to ‘just not do nothing’ and spend their time where they see fit……I support as many as I can and many times through other moms, dads, and people with diabetes who I respect so I support those who advocate, ride, walk, run, or juggle plates for their organization.

My time, my career, and my finances are spent supporting an entity that opened its doors with one focus and they will close them only when THAT focus is realized……when a biological cure is found.  That’s it.  Many initiatives in the research world that have not produced THAT cure, have closed their doors or changed direction.  It’s frustrating when something does not work. But I support the DRI because they have continued to build upon their progress and have remained solely focused on the path to a cure. The scientists at the DRI, those closest to the research, believe that a cure is possible. And I know they will not stop until they reach that goal.

Re……search.   To look again.
And again, and again, and again when necessary, until the answer is found.  NO ONE entity does that more than the DRI……so it’s here that gets the most amount of my focus to the point that it has become my career, as well.  That razor-edged focus is what brought me here…..and keeps me here.
Cure focused…..only focus.

For this Father’s Day Month, the DRI is paying tribute to dads in the diabetes community.  I’m honored to not only be included to tell some of my story but also show a little bit about the Institute itself with a video tour…..and here it is (click here). It features another dad along with me who not only has T1D but who is a top researcher, as well.  The DRI has also been given a $75,000 Father’s Day match and there’s an opportunity for you to help reach that goal as well. Click here for the direct link to donate if you like. The choice is yours, but the video gives you a little taste of why I spend so much of my life with the DRI.  Enjoy it.  Happy Father’s Day.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

A Life Gone……Reminds Me to LIVE!

Posted on | by tomkarlya | 4 Comments on A Life Gone……Reminds Me to LIVE!

As many people know, I lost my mom last week.  Thank you to the SO MANY who shared their thoughts and prayers with us, they were all greatly appreciated and felt.  My mom had a great life with her almost 92 years with 6 children, 23 grandchildren, and 19 great grandchildren.  I’m very grateful for the amount of time we had with her and I’m well aware how many people have nowhere near the wonderful amount of time we had with my mom.

But she’s gone…..and that hurts.

In as much as I fully and completely realize and understand how fortunate I was, the loss is immeasurable.  The pain is real.  I guess I thought mom (or moo-moo as I called her) would just be here…..well….forever.

Silly thought, that.

As we took her to the final resting place I looked out over the tens of thousands of headstones at Calverton National Cemetery.  There she was laid to rest with my dad, who was in the military.  Almost as far as the eye could see was a sea of bright white tombstones.

We had my mom’s service and we left.  To heal.  To move on.

Sleeping well has not yet fully returned to me, as I ponder the loss of probably the most influential person in my life.  The visual in my head continues of all those tombstones.  They all represent at least one, and in many cases, two or more lives.  Lives that are now gone.  I believe, as my faith teaches me, in a ‘beyond here’; someday we all will be reunited.

But my thoughts are on the lives lost, who once lived as represented in the sea of tombstones I witnessed in a military-type cemetery.  Lives….gone by.  Not just here, but in many other places as well…..lined with cemeteries.
Millions and millions of lives who have walked this earth and are now gone.

What did they do to leave their mark?

You see, we all are given the wonderful opportunity to actually DO something with our lives.  The choices are limitless.  But we can all start to live with a positive attitude.  With the attitude that this day will be better than yesterday and that we each have the ability to make our life better for not only ourselves, but for others.

If one lives this way, I would imagine that there is little room for anger or bitterness.
Perhaps a little bit less of the way I think is better than the way you think.   And less of the thought process, the things I do are better than the things you do.  I have often stated that we all need to ‘just not do nothing’.  I would hate to get to my final days and look in the mirror and see staring back at me a man who could have done more—-that is just unacceptable.

I want my tombstone to read; did it all fully and to the best of his ability.  Anything short of that would be a shame.  There is so much to do, so much to actually LIVE and experience.  Why waste it complaining about the things we cannot change.  Change the things we can, influence those who will listen, stop waiting…….because if you’re not IN IT…….you’re not in it.

I want to fill up the days I have because the time that we are granted is surely as finite as knowing the sun will rise.  I intend to fill it….with good……with positive….with things to enjoy….with things I CAN change.  Moo-moo would want that of me.  I want that of me.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

What a Super Hero Looks Like

Posted on | by tomkarlya | 1 Comment on What a Super Hero Looks Like

  I LOVE THIS PHOTO.  Some pictures need no captions and if ever there was a photo of a fearless child…….this is it.  Let me introduce you to Helen, a 5 year-old from Texas who loves to dance and was diagnosed just over a year ago.  The photo was taken by Ivy Reyes, a friend of the family and a professional photographer (Ivyreyesphotography.com).  Helen wanted to show off her Dexcom and her Omnipod between performances of her dance recital.  They help her live her life to the fullest.  This is not a commercial for them and any management tools that help our kids fight this monster successfully…….are the tools needed……….just as all Super Hero would need.

Take THAT diabetes!

There was a sculpture made a few years ago entitled “Fearless Girl” which I wrote about once, talk about life imitating art.  Time and time again I have written that not all super heroes wear capes, Helen fits this description 1000%.  When I spoke to Trena, Helen’s mom, she informed me that the look in this photo of Helen’s “here I am and I am not afraid of you”, is exactly how Helen takes on life each and every day.  Playing t-ball, running, playing outside, playing with her big brother, and playing with her dad at his fire house are just some of the ways  this young lady ‘takes on her diabetes’ and allows it to stop her……..from nothing.

So many times we read about the singer or sports player or professional ‘whatever’ who continues life while dealing with their diabetes.  Little Helen sends a message as well, and as loud, and as clear, as the one who takes the snap of a football on any Sunday in the NFL.  “Diabetes is what I have and not who I am”.

Helen is just as much a hero as anyone else who lives with this disease day in and day out and allows diabetes to stop them……from nothing.  With dad a fireman, and mom a nurse; Helen has had much training in her young life what a hero looks like, and on this day she clearly, and undeniably,…….shows us.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Mother’s Day……..Wishing a Good One is Not Enough; Thank you!

Posted on | by tomkarlya | Leave a Comment on Mother’s Day……..Wishing a Good One is Not Enough; Thank you!

I consider myself someone who is, and has been, fairly active in all of my children’s lives; and have certainly been active pertaining to the youngest two and their diabetes.  And in anything that I have done, I have always and in all ways known that it pales greatly to what their mom has done, and continues to do, in all three of their lives.

From the first day Kaitlyn was diagnosed in 1992 at age 2, her mom did not merely learn about this disease, she absorbed it.  It was as in those super hero films when we see the super hero ‘step’ into another to become that persona.  From day one, Kaitlyn’s mom stepped into the diabetes monster so they would become one and she would control it.  She gave up more than a career, more than countless sleepless nights, and more than pleasantries; she gave up a portion of her own self to make sure she would control this monster.

And as sweetly as she controlled her voice when she spoke to Kaitlyn growing up with this disease since age 2,  make no mistake about it; she was instilling in her daughter, and later her son as well, the strongest backbone that any child could ever hope to grow in doing battle with a monster.

Jill is not a tall woman by any means, she has these big round blue eyes and this high-pitched voice that upon meeting her you would think she is one of the sweetest people you will ever meet, and that would be correct; but so much so that one could easily make the mistake thinking that her sweetness is a weakness.  When in reality, that is absolutely and completely 100% a mistake…………to ever think.

I have watched, now, for over 25 years as she has done battle with this disease.  She arms herself better than I ever could and she has tamed this disease more than I ever hoped to.  Whatever I may have done, or others think I have done in this diabetes battle, I do not come even close compared to what she has meant in the lives of all our children but specifically, our two with diabetes.

She not only taught herself in a time that there was no computer to just turn on and absorb, she also found time when there was just not enough hours in a day.  Plain and simply put, she gave back to our kids the very life that diabetes thought would suck dry.  Diabetes thought she was as weak; as she was sweet.

Big mistake.

Like many moms, when it comes to their children, she is an unstoppable force to be reckoned with when endangering her young ones. She absorbed the pain and cried countless tears so her children’s would be less.  She stayed awake so her kids could sleep.  She has not only perfected the very act of protecting them; she has fiercely empowered them to stand on their own two feet to be the best they could be and she also instilled in them……..diabetes would just not do in their lives.

And it hasn’t, and it won’t.

So this week is Mother’s Day.  Somehow merely wishing Jill a Happy Mother’s Day is nowhere near enough, I feel obligated to also thank her.  Because in addition to being an incredible mom, she taught our kids how to live.  She taught them that diabetes just cannot do.  She taught them, by example, that education is the absolute equalizer.  She taught them that they have to do everything they can to stay on top of this disease every day, and she taught them that they have to do all that, and pray that they are kept safe.  She taught all of our kids much about this world.

When I reflect back on our lives, I realize that all three of our children are more than I could have ever hoped.  I know I played a role in our kid’s lives as most dads do; BUT I also know beyond a shadow of a doubt that our kids have embraced life with the strength, humility, gusto, and backbone of a superhero……..because of their mom.

Thank you for that, Jill, and Happy Mother’s Day.  And Happy Mother’s Day to all of you who taught men like me that clearly all super heroes don’t have, nor even need, capes.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

If One Doesn’t take Bad Advice……Leaves No One to Blame.

Posted on | by tomkarlya | Leave a Comment on If One Doesn’t take Bad Advice……Leaves No One to Blame.

Clearly the way I was bought up, is much different from the way we bought up our own children, which I’m sure is even much different from today’s skills needed for parenting.  How much of the way we were bought up plays a role in how we deal with the diabetes in our own house?

I’m shocked when I read how much advice is given on social media to those who merely ask people’s opinion.  There is no filter, or further questioning, to ensure the advice being given is actually sound medical advice.  I find this increasingly alarming.  Growing up, we NEVER took someone’s word as Gospel-truth.  I actually read, recently, ‘you should do what you think is right for your child and not what the doctor says’.

Really?  Wow.

Now wait a second.  No one knows your child more than you and I’m not bringing into question that point.  But for someone to ‘just put out there’ “….and not do what the doctor says….” is as much irresponsible as it is dangerous.

At the end of the day it’s up to each person to make the right decision based upon all of the possible knowledge/input one may attain in making sound medical decisions.  I’m also not saying that there have been times that a decision from medical personnel should not be questioned.  What I’m saying is be wary when someone makes a blanket statement as absolute truth who is no position to make such a declaration.

Growing up and during the summer months, I left my house shortly after sunrise and was not expected to be home until just before dark.  No cell phones.  No contact.  I think it’s a pretty safe bet to say that doesn’t happen so much anymore.   One did not ask their neighbor over the backyard fence about how to treat a sick relative at home either.  Today we are connected at every turn and seeking someone’s opinion and/or help is at our fingertips every day.  And when dad told me something and my inquiry into ‘why”, it was met with, “Because I said so…..”, well such is not the case anymore.

Just make sure that quick availability……doesn’t give way to bad advice.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.