What Are We Waiting For?

How long have you been at this diabetes thing? I mean, maybe you are not REALLY in this fight, but are on the sidelines, does that sound familiar? Perhaps it’s because your child has this disease and you do not really have to do the battles, could that be it? There are always many others to pick up and continue this fight?

This fight? What does that mean? Everyday is a fight. Everyday is a chance that diabetes will win. Fight for what? To only fight again on the tomorrows that will always come? To have to do battle with everything from a disease, to an insurance company, to doctor’s office, to a list of family memebers who still, after so many years, do not have a clue what is like to share a household with diabetes.

The fight to find a cure? You know the cure that’s only five years away. It’s why people choose not to get involved. Why should we? Pharma companies are only hiding the cure; what good is one voice? Pharma companies rule everything, we stand no chance, why bother? The pain is just so much when one fights a lost cause, why bother?

Why give of one’s time, money, resources, connections, and or another ounce of whatever we have left…….why bother?

Listen for a moment…….hear that……..that sound of nothing you hear is what happens when no one does anything.

Me?

Well I believe differently. I believe one should “never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”

Think about that statement……..Margaret Mead’s words of “…..in fact it is the only thing that ever has.”

And the world changed. And it will again, and again, and again, but only as long as someone stands up and says that the norm will just not do. This is not easy. It’s hard. If it were easy, everyone would do it but everyone can’t. The don’t have a child with diabetes. How could they understand if they do not live it? They can’t! You can. You live it. If you do not make this world a better place for your child living with type 1 diabetes; I have a question for you, who will?

Be part of that small group. If you need inspiration, look at your child’s face while they sleep, many have lost their child to this disease while they slept. Yours will wake up tomorrow. What will you do to nake it a better place? Don’t asks someone what they think, look in the mirror and ask that person what they think? Don’t let that person in the mirror out of your sight until an answer is given. Let’s ride into hell together for that heavenly cause!

Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has. Think about it!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Troubled? Yes. Give Up? Never

Hard to believe that on September 26th, we passed 28 years fighting this beast called tye 1 diabetes (t1d). On the day my daughter was diagnosed I promised her that we would not give up until the day that a biological cure was found.

When Barack Obama left the presidency, he was addressing congress when he said, “One of the few regrets of my presidency is that the rancor and suspicion between the parties has gotten worse, not better.” In an interview he expanded on that point stating that he promised he would reach across the aisle and bridge that gap. The reporter started to mention some of the reasons which might explain why it hadn’t happened, but the former President would have none of it stating that he did not say he would do it ‘if’ x-y-z happened, he said he would do it.

I bring that up because the more I’m in this world, the more I believe we will find a cure. I have come to understand what that actually means over these past years. I think it’s time we challenge the research world with a little more vigor. Either something is working, or it isn’t. It is either time to solve the barriers standing between a good research project and a great research project, or pull the plug and move on.

I did not promise my daughter we would get to ‘THAT’ cure if x-y-z happened, I said we would ge there. My patience is wearing thin. My tolerance for mumbo-jumbo is at an end. If you have something, lay it on the table……..if you don’t, stop wasting your time, others’ time, and boat load of money.

I always knew this search would not be easy. The cure is not in aisle 7B as in a supermarket. But it’s out there. I’ve heard so many who have been in this battle for as long as I or longer state, I just can’t do it anymore, it’s a lie, a cure doesn’t exist.

I say, if not us being vocal about it, the sound will soon dwindle out to a mere echo of a noise within a seashell. If not us, who? I cannot stop pursuing that cure. I will challenge those in the research world across the globe. I do not mean to be disrespectful to anyone doing the work needed but the lives of my children are on the line here. If you are wasting one ounce of your energy doing something other than what you have been charged to do, you’re playing with the precious minutes of my children’s lives and with millions of others living with t1d.

My children deserve better. Please, in everything that is holy, give them your complete dedication. I ask you as a………………..
Diabetesdad

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

When Dreams Become Reality

Have you ever heard of a company called, Traf-O-Data? It processed and analyzed data but if you did not hear of it, it’s not surprising as it failed miserably. Ever hear of a small basketball franchise called the Cleveland Pipers? If you blinked, you missed them as they were created in 1960 and went bankrupt in 1962. If I told you that one of the greatest creative minds who ever lived was fired from a newspaper being told he lacked creativity, would you believe me? Well it’s true and the man was Walt Disney. The data company that failed belonged to none other than Bill Gates, and the failed basketball team was owned by George Steinbrenner. His NY Yankees, love them or hate them, are the most successful team in sports history with 27 World Series wins; not bad for a team purchased for 8.8 million dollars. in 2019, Forbes magazine reported the team’s worth at 4.6 billions—that’s with a “B”.

No one likes to go through loses, or getting it wrong; but when you believe in something, you stay at it. I have never met a parent, ever, who at the onset of their child’s diagnosis did not wonder how they would get through the next week, much less the upcoming years. As parents we ask the question, “How?”

Something happens while at the hospital, it is a light switch turned on. You make a decision.You look at that wonderful miracle entrusted to you and you resolve yourself, WE WILL MAKE IT. And one day becomes a week, and a month, a year, 5 years, ten years. The smell you remember from the first time you entered the hospital, the first bus ride, sports tryouts, step-up, dance classes, sports teams, graduation, college, marriage.

I don’t have a multi-million dollar sports franchise or company. What I have, what I have been given, is a grandchild. After Victoria and I met for the first time, I walked out of my daughter’s house and took a ride to seven-eleven, had a cup of coffee……..and I cried like a baby. We had won the Superbowl. She is so beautiful and we are all so fortunate.

On September 26, 1992, the day Kaitlyn was diagnosed, the reality I am now in was beyond anything I could ever think of coming to pass; Victoria Lynn. The way Kaitlyn has lived her life with no boundaries. Taking any set back and saying, “Okay, that’s now, that’s not tomorrow.” And how she taught us when she said in an interview at age nine, “…..oh no…..I have diabetes, diabetes IS NOT who I am.” And she has lived that every day of her life. Good times, bad times, set backs, successes, becoming a wife, becoming a Board Certified Nurse Practitioner, and now becoming a mom.

When she was diagnosed, we took it on. At a point we gave it back to her and stayed in full view. Now we just stay observe, enjoy, smile. We smile a lot. She married a man who has taken it on. A very good man. Together they will succeed. A long way since we said, “How will we get through today?” We found our answer, one step at a time. One. Step. At. A. Time.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Town Hall Meeting–Back to School in a COVD-19 World

I’m so excited to share this with you. This is not a meeting on wearing masks or not wearing masks; it is not about whether you should home school your child or not; it is about knowing that different states, as well as school districts, have different protocols. It’s about working within the guidelines of what is available and where to go for help. And one of the things I am most proud of, with this town hall meeting (made up of panelists who are true professionals who care so much), is we will include the psyche-social aspect; the anxiety, the signs, what to look for, what steps to take, in this crucial part of your child’s care as they head back to school.

If you read my columns, you have heard me speak of the late and wonderful Dr. Richard Rubin…….a leader that taught me that the psyche-social aspect is as important as the managements tools our child uses in their world of diabetes. As we were planning this, his voice was loud and clear in my head that we needed to include this at this meeting.
Here is the link for you to register.
 https://zoom.us/webinar/register/WN_LAqTVCjLSOOpvInrodqGlg

Part 2:

At CWD Friends for Life, this year, we revealed this shirt and the feedback was immediate and wonderful. The hope for a cannot stop and cannot be quarantined. How would you like one for free? Your best way is to join the DRIF Host Committee for our Back To School Town Hall meeting. To find out further details, just email me at tomkarlya@drif.org and in the subject line write ‘I want to be on the Host Committee’ and I will send you details.

Share this with others. The cost is free and the information extremely valuable.

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

Lisa Awards 2020, Powerhouses in Our Diabetes World and One Personal Recognition

So hard to fathom that eleven years has gone by that our sweet Lisa left this world.  But she went out with a voice shouting from the mountaintops and it’s in the memory of that voice that I keep the promise I gave to my Little Brother (honorary), Mark, that in honor of his wife I would bestow The Lisa Award each year to those who understand The Power of One.

It’s given to people who, in their own way, change the world just like Lisa did.  This is a VERY BIG deal to me because these awards are not given lightly.  They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day.  My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would, or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards. She was diagnosed with cancer.  Lisa and Mark shared their writings of her journey, in real-time, with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

This year’s recipients are:

Mike Hoskins MIke has had type 1 diabetes since March 1984, when he was a 5 years old (coincidentally his mom was diagnosed at age 5 as well).  Originally from Southeast Michigan, he lived in Central Indiana from 2004 to 2015 before returning to his home state of Michigan. A newspaper journalist by trade, hitting all the various types of papers in my first professional decade out of college – weekly, large and small dailies, and a statewide specialty legal newspaper. Since 2012 he has been writing for DiabetesMine where he’s been able to combine my passions for both journalism and diabetes advocacy full-time.

Mike’s power-of-one is evident in so many topics of which he writes that is crucially important to all those in the diabetes world. If it’s a story of interest on a local level about a family or on the national level like the importance of insulin prices being affordable, Mike is the one who leads all others reporting the stories with an eye for detail and a heart of passion for a disease he lives with as well. He, like Lisa, believes whole heartedly that one person can make a difference, they just have to want to do so,

Although this year’s award goes to this incredible group that are the watchdogs during hurricane season and what it means to those living in impacted areas with diabetes, the true back bone, heart, and soul are Carol Atkinson, Director of Insulin for Life and Kelly Mueller a Vice President with the American Diabetes Association—it is under their leadership that so much gets done so quickly in a desperate time of need. They will quickly pass on the kudos to the group and that’s fine as the entire group is being recognized but no one puts in more time and effort than Carol and Kelly.

In a time of crisis the day starts with the latest disaster reports and course of action is chartered dealing with helping individuals living with diabetes and also making sure diabetes supplies are getting to the hardest hit areas. Whether it is a plane provided by a celebrity or a local who can carry the supplies on the back of a mule to the furthest hills in a country impacted, the job gets done. This fairly new entity is to be commended that they take many powers of one, link them together, and face the fiercest of world wide catastrophes.

Andre Burnett Indulge me please for my final choice of a Lisa Award this year; it is my son-in-law, but I think of him more as my son as well. He is entrusted with one of the most important things in my life, my only daughter. Aside from the fact that each day he has vowed to serve and protect the public as a police officer, the power of one is that he is the single most important strength in my daughter’s life. He has grown into being her partner as well as her protector. During a recent visit he quietly left the room where we were all speaking and came in with cookies and juice. Kaitlyn looked quite surprised, “Your CGM is alarming.” None of us heard it but he did. No fanfare…just got it done.

When he asked for Kaitlyn’s hand in marriage he assured me with the phrase, “Nothing will happen to her on my watch”. It was a comforting phrase to hear but he has, on many, many occasions lived up to that promise. His smile is infectious and his demeanor is such of a calm, needed in this world during these times. My daughter is one lucky woman, and we are one fortunate family to have this young man in our lives.

So that is this year’s class of Lisa Award recipients. Happy Birthday Lisa…..we miss you still.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

From “A” DiabetesDad

As you read in the title, I am a DiabetesDad.  Never said I was ‘the’ diabetesdad, we are many.  Today is Father’s Day.  Happy Father’s Day to all of you who are fortunate enough to have someone in your life who calls you dad.  In our children’s lives, we are ‘the’ dad.  Unless you are in the small number of families with two dads, being a dad is a unique and definitive.  You, are dad.

There is a world around us, some say crumbling around us, some say challenging around us, some just say there is a world around us.  In any given time in our history people have declared that this moment in time is like none other before.  Good, bad, different put aside, this moment in time is today.  What will you do with it?

I have three incredible kids.  I have a son-in-law and a daughter-in-law (to be) who I consider child #4 and child #5, they are THAT special to me and I count myself “that lucky”.  We are not a perfect family and if you asked any of us, we would laugh at that notion.  What we are, is, together.  We can call each other when we need to talk.  We can call each other for the good, the bad, when fearful, and sometimes for no reason at all.

When the cell phone says a name of one of my kids as it begins to ‘buzz’, I undoubtedly will smile.  Thinking of them makes me smile.  My oldest is active in his community.  He has put his life on the line more times than I can count.  Proud is the word that comes to mind.  My second child is the type that is sincerely giddy at opening stocking stuffers and she is wicked -smart.  It’s fun to see her enjoying the moment.  My youngest is both the business guy and computer geek.  His knowledge is incredible and his insight uncanny. I envy his knowledge.

We are all fairly opinionated.  We make each other laugh.  We make each other think.  Probably no one can get under our skin as well and we can rarely feel as safe as when one of them has our backs.  We are, family.  I’m not sure how other families work but mine are truly the air my lungs need to breath.  Perfect is about as far as can be from who we are but we are…..us. 

Each day I begin with the thought of each of them.  I love them to bits.  It’s my hope they continue to grow and thrive.  To help those less fortunate, be accepting of people who differ from them in their thoughts, actions, appearances and beliefs.  To not think they are better or worse than the next one.  To give a hand when needed and touch a hand when helping others.  To learn, listen, and above all laugh.  To not take themselves so seriously.

This is my family and these kids make me a father.  It is my sincerest hope that all of you are surrounded by family because at the end of the day, family is what it’s all about.  Happy father’s day to all of you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

New Heroes Emerge Everyday

I don’t know if hero is a word Mike Otten likes, or is even comfortable to be called. Perhaps in-line with his business at Sequa Deli and Caterers of Patchogue, hero means what it should, a great sandwich and surely Mike’s store is one of the best at that.

Perhaps Mike is just a really smart business man. But if you know Mike, you know he has found himself in the middle of messy situations before, all having nothing to do with himself. During those times he’s known to rise to the situation-at-hand. Those who know him, know the feeling of hair standing up on the back of your neck as he explains his personal story regarding 911. It was also personal tragedy losing family members on that day, as well. It’s a story for a different day. But surely ask him about it some day.

Interesting point about heroes; if you know one, you know they don’t think about what they are doing as some great feat of heroism, they just do what’s got to be done. They do when no one else will do. They do what they do with all of their heart and soul. They say, “It’s my job.”

Truth be known, Mike Otten is a guy I love like a brother. Working at my desk, what seems like a million years ago, my phone rang. On the other end of the call was a dad. A dad to a child newly diagnosed with type 1 diabetes. His questions were great questions. His thirst for knowledge was admirable. I hung up the phone thinking, this is a man I will like for a long time. And I surely have. Mike is not a mushy kind of guy. He’s direct. He’s not afraid to ask hard questions. He’s also a guy that when needed, he’s the one you want behind you. Because when he’s with you, he’s with you all the way.

So it’s more than just a great businessman who keeps Sequa Deli open during times like these. Probably the first store open at the time when this all started and the first one open each morning. You see, many people stop at his store every day. They rely on that morning stop for coffee, or whatever, to get them going to help others. Mike quickly learned this and did what was needed to be there for them. And as we have learned, it’s more than just the first responders and medical teams who are heroes these days. Of late it’s also the guy on the corner who gets his store open so all of those people on the front line will have a fresh coffee; and a person in the neighborhood has a place to turn for items needed. Those in the supermarkets, and those who deliver packages, and our mail, and are out there doing what needs to get done in an air that is less than safe.

I’m sure more than just a few cups of coffee have been given away to those who frequent Mike’s store. Mike’s like that. It’s about the problem at hand. It’s about people. It’s about giving back. If you’re on Long Island in the Patchogue area, see what a real hero looks like. He or she may be in scrubs, may be in a police uniform, a first responders uniform, but they could also be in a red supermarket jacket or even a white apron behind a deli counter. Heroes are where they need to be and they are who we need them to be at a time most needed. Mike Otten is such a hero, and it’s not new to him at all.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Is Anyone There?

It’s called a Ghost Light or a Stage Manger’s Light. Traditionally, the first one to arrive at the theatre is the Stage Manager. The fully dark theatre has this one light on, it is a safety mechanism so the arriving stage manager is not walking around in a fully dark theatre.

In the pitch black theatre, it is a light to show the way.

Seems now more than ever, we need a light to show us away. In the millions and millions of items written in the last 8 weeks, every time I sat down to write, I kept asking the same question; “What could I possible add that has not been said, forecast, and/or written. I felt I couldn’t. So I didn’t.

Turns out that I miss you all more than I could imagine anyone missing me. Finding something to read is not so difficult these days. Do you find yourself asking the same question I do, “Is anyone out there?” The answer is, yes, of course but being inside and living your life with your family only, inside; makes you wonder what the world is doing out there.

But truth be known, the ‘out there’ is the same as where we each are……living in a silo’d life. For how long?

But the world has changed. When you see a friend or loved one you have not seen in a while and you are with grasp, you hem….you haw…..and finally you give a littlle wave and a smile. “Hi.”
“Hi”.

It’s painful, isn’t it? We are all together in this loneliness? We try to connect. We try to communicate. But connect and communicate, we have learned lately, are two completely different animals.

As a group, the world is learning a lesson about how important teachers are.
As a group, the world is learning how important being with each other is.
As a group, the world is learning how important people are. Not just first responders and nurses, but the the one stocking the shelves in the supermarket are important as well.
The ones we would just normally walk by, we now take notice. “Thank goodness that person is working today”, has come to mean so much more for so many lately.

To me, I can hardly wait until we get back to normal. Will we get back to normal? Could it be that the Ghost Light is also a metaphor for what it really represents. To see our way in the darkness, to not fall and get hurt, we need that light…….and in truth…..it is each other.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Now More than Ever–Just Don’t do Nothing

Image

I cannot tell you how many times I sat down to write this month. But any time I started, it just felt silly to try to write anything that was not COVID-19 related. But there were a zillion diabetes peeps all sharing information and if I cannot give a new perspective on something I feel it would be painful to write which would probably make it death to read as well.

But something has hit me recently that I DO want to share with you. I notice all of the usual suspects running commercials about disasters and such and trying to link COVID-19 to their charity, and many of those are doing really good things for people in need. I have a commercial I would like to run too. It would look like this:

DiabetesDad sitting on a chair.
Looking relaxed.
Camera shot from further back and slowly zooms in.

Hi.
There are many many organizations doing lots of great things for people in need. People are lucky to have so many people ready to help in this time of COVID-19.
Soon we will get on with our lives again and when we do my kids will still have diabetes. I don’t have a lot of fabulous organizations helping my kids………..I have you.
So when you can, please help get us back to finding a cure for all of our kids with diabetes.
We never stopped needing you.
And we need you more than ever, today.
Thank you.

Link shows up on the screen:
https://www.diabetesresearch.org/Give

As many of you know, the Diabetes Research Institute is where I believe I need to spend the bulk of my own energy. But know this; whomever deserves your energy will be in a great need when this is over. There is a great need now.

Because when it comes right down to it, the only people who will really help those in the diabetes community IS the diabetes community.

Don’t just do nothing, now more than ever.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Why Toilet Paper?

I can guess there are many theories on what we can run out of when there is a worldwide emergency. If you asked the general public this question 4 weeks ago I am sure you would have received answers like; water, meat, eggs, milk, dairy and more. I am also pretty sure that the one answer you would not have received was, ‘toilet paper’. I, like so many others have gone to the stores in search of the evasiveness of something so common as toilet paper.

I know the stock boy at my local Piggly Wiggly Supermarket because every morning at the start of the day, I am at the door, as probably many others are as well, waiting for our answer. The door is unlocked and he comes out, “Sorry folks, no toilet paper today.” The shelves are still empty.

Really? Toilet paper?

March 28th was my wife’s birthday. The long planned party and the kids flying in for the day had long been cancelled. My job was to try and salvage the day with people living close by (relax, it was only 4 people, I follow the rules). I got to the supermarket as soon as the doors opened. I did not want to be there with a store full of people. I headed past the paper aisle and glanced down knowing the shelves would be empty. I peered down the aisle as I made my way to the frozen foods, and BAM; there they were. Two packages of 12 rolls, the maximum limit was waiting on the shelf. The last two packages.

I turned my cart so quickly that I knocked the display of graham crackers completely over and I ran down the aisle. I grabbed the two prized packages and held them high in the air; “AHHHHH HAAAAA; Success!”

I quickly realized that someone may be watching and as I looked both ways, I bought the treasure close to my chest, and placed them in my cart, covering them with dairy products so no one would see them. I had more to buy, but I was nervous. So I quickly looked all around as I made my way to the check-out. I laid everything down, paid for it, and ran to my car. I dumped everything into the back, covered it with a blanket, and made my way back to the supermarket to finish my shopping.

As I walked back into the supermarket with my smile of success, I could not help but think……..but why toilet paper?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.