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’.

Welcome to Our World—-the New Normal

Wow. Talk about a world changing and lives interrupted. There are a million ways you can find out about the Corona-Virus as it relates to diabetes. Punch those two words into any search engine and you will find all the information you want……and even a good deal that you probably don’t want.

New normal? I have heard that word more times this week than ever before but those of us who have a loved one with diabetes, well we know what the phrase ‘new normal’ means, don’t we? We have had our lives turned completely upside down before, heaven’t we? Been there, done that.

I have felt a little guilty at not feeling like my life has been so disrupted. Funny thing about having your life disrupted, after a while, disruption becomes our new normal. Different disruptions at different levels for sure, but with these disruptions we have had added to our lives came the word; ‘adjust’. We have had our share of doing that too, haven’t we?

In this ever-changing world, daily it seems, I think of the many out there who I know. Even though I don’t always hear from all of you, I know you are out there. And I’m concerned. Please make sure you are taking care of……..you.

Frightening times for us, I know. I have had loved ones stricken by this virus, and others who must go do their jobs on the front line for the reason, as one of them told me, “We signed up for this………no matter what.”

And they go.

No matter what. Imagine throwing caution to the wind as the rest of the world knows it to care for, protect, and watch over a world that you do not know. But a world that calls upon you, ‘no matter what’.

And in our homes we sit, staring at walls, binge watching, playing games, and finally cleaning that drawer that has called your name for years. Please get out and walk. Sit in the yard. This is all just beginning. Most are probably just finishing ‘week one’ with this ‘new normal’.

You and I, well we have had an unfair advantage because our worlds have changed on a dime before, haven’t they? Changed when our child was diagnosed. Changed when 9/11 occurred. And here we are again. And again, a new normal.

What I wouldn’t give to just have normal back……how about you?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

She is Riveting

Rosie the Riveter?  Ever see that picture?  She actually was not the original but she is surely the most well-known.  The one we know today came to represent the empowerment of women.  The ‘one we know’ was commissioned by the Westinghouse Company in 1942 to boost morale in the company.

But Rosie has come to mean so much more than just ‘a’ woman for ’a’ company, she has become the representation of a movement.  She has come to represent all women, in the battle of equality.  A battle that should probably have never had to occur.  But history had different roads of the same jobs being paid differently depending on who was doing the job. With the iconic phrase, “WE CAN DO IT”, it has been the battle cry for some time.  It has been the demand for “…..yes, we can!”

I was taken back recently by a picture I came across on the PEP Squad FB page.  It was created by Kara Mitchel and is of her daughter Avery.  Avery is 13 years old and was diagnosed at the age of nine.  Mom shares that Avery is not one to show off her diabetes gear but she is also happy to show that; “….she is kicking diabetes’ butt….” You GO GIRL! Just as the original poster was so much more than a meaning for or about one person, this Diastrong poster, featuring Avery, should be hanging in rooms across this country.  For that matter, it should be hanging in every pediatric-endo’s office in the world.

That little squint in Avery’s eyes states clearly that she ‘has’ this. She is showing confidence in the muscle she shows.   She could represent every child out there to say, “We Got This”.  We ‘got this’ thing called diabetes, we have it, we own it and it will not own us.  We are strong enough to handle whatever it is that diabetes throws at us.  The fact that Avery is wearing a Dexcom CGM lends me to believe that she should be given a spokesperson contract; call me I will gladly represent you with the Dexcom Company——this picture is THAT good.

So many times we look for someone to inspire our kids.  Sometimes it is a sports star or entertainment star sought after but I say, for inspiration, you need to look no further.  There is a hero among us.  A young lady who shows she is strong enough, good enough, and well enough to take on this thing called diabetes.  Every child, and in fact many adults too, should hang this picture in an obvious place to remind all of us that when it comes to dealing with diabetes, YOU CAN DO IT.  We Can Do It! Like Avery, we are DIASTRONG!
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Photo with permission and created by Carleigh Alvery at Ember & Ash Photography.

If Only Biology was a Device

I have often wished that that ‘biological’ make-up of our kids living with diabetes were the same make-up of a diabetes management device. My daughter was one of the first kids wearing an insulin pump on Long Island. Hard to think that the original proto-type for an insulin pump looked like the one in the picture. Imagine walking around with that thing on?

BUT………

……..once someone engineered the workings, the world of device research could take their shot at making it faster, smaller, quicker. And once THAT was done they could connect to other devices to dispense insulin. It was easy to do that because the device was there. The world just had to make that device better, and they did. As with the insulin pump, so many other devices and companies sunk everything they had into making ‘their device’ the best one out there.

And each step of the way since the day insulin was discovered, less than 100 years ago, the headlines all touted ‘The closest thing to a cure for diabetes.’ Uhhhhhmmm…..no.
It seems devices get the good press while that all elusive biological research continued ,but too slow to our liking .

Years ago, I sat in a meeting where the conventional world stated that the transfer of islet producing cells from one individual to another would never work………but here’s the thing…….it did work. But the same nay-sayers said that well sure, but they are on immunosupressive drugs. But the truth is that each person in those clinical trials suffered from sever hypoglycemic unawareness. They could not hold a job, drive a car, and in essence their quality of life was severely impaired. So those who ‘were in the know’ kept force-feeding the world that the immunosupression drugs was a deal-breaker and abandoned hope and told the world they should abandon that idea as well..

Well not everyone and thank God, not everyone.

For the largest amount of those in the trials (some have been off insulin for over ten years) even those that ended back on small doses of insulin or completely back on insulin altogether, their quality of life changed forever as their hypoglycemic unawareness was no more. But I’m not touting that the cure is here, it is not.

But I have a question, what if someone stated way back when; “well that insulin pump is just too big, forget it?” They didn’t. They kept at it.

And we have to make sure that the world of biological research continues to ‘work at it’. Now across the world various many Researchers are working on figuring out a way to implement these biologically produced cells in the right place in the body, protect them, sustain them, and have enough to go around. Now many people think that ‘big pharma’ will do everything to prevent this from happening. I don’t think so, but let’s say for a second that the belief is true, do we just say okay and walk away?

If there is one thing I know about this wonderful diabetes community, is that we never walked away from a fight. Whoever and wherever you choose to support is ALL YOUR CHOICE…….but if we know what works but has hurdles, why would we not demand that as much money as possible be spent to eliminate these hurdles?

“Re” — “Search”—to look again.
And again, and again, and again until we get there.
Biologically?—just like the backpack insulin of yesteryear—–it needs to be improved, but not abandoned. In fact all steps surrounding this research should be ramped up if you ask me. We need more looking into this area, and all surrounding ideas.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

PLEASE Learn this Phrase: “Ask Your Medical Team.”

Whether you have been in this diabetes world for a day or ninety years, the things you have gone through have created volumes of incredible and useful knowledge. Much of that experience can help others, but we also ALWAYS and in ALL WAYS must remember that it very well may be that it is only relative to our own experience.

Once again, I read where someone came on line who had reversed the necessary doses of insulin for their child. I was amazed at the lack of times, those who had suggestions, that did not begin their statements with; “This is what we do, but call someone on your medical team first.”

THAT is the ONLY ACCEPTABLE discussion to have. If you get annoyed at me for saying that, well that’s fine. This is not my opinion. We, all of us; ‘WE’ ARE NOT DOCTORS or trained enough to give medical advice. There are many medical professionals on our team who have both years of education and experience that we pay for; for a reason. This is not about an experience where one of us proved our medical team wrong on a particular isolated incident; true, no one knows our children better than we do. So there are always times our medical team will say something, and we will discuss the point. Many, if not most, of those times our medical team will listen and a correct course of action will be charted.

But please remember that should you seek people’s opinions on what they did for their child regrading their diabetes, whatever opinion they suggest, know this—-IT IS JUST AN OPINION based on their individual experiences.

I shutter to think that a newly diagnosed mom will one day go online and seeks advice and someone suggest something not knowing ANYTHING else about the situation and the advice is wrong because there is something else going on that is not known. The results could be catastrophic.

Social media is hugely powerful and helpful Very simple rule to ALWAYS remember; whether you give or seek advice know that first thought, comment, or course of action should always be, ‘……ask your medical team first.

Of course your experiences can be HUGELY helpful. Your insight HUGELY needed. But a medical team must always be involved.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Are You a Mom to a Young T1D?

Dear Mom (Dad’s Too),
I have a message for you.
You may not know me……you may have read something I may have had something to do with regrading diabetes…….you may not have read anything at all. In 1992, at the age of two, my little girl was diagnosed with type 1 diabetes. I have stood in your shoes. I asked the same questions you ask every day since diagnosed. Questions you ask even today.

I asked if she would have a normal life in school? Would she date? Would she have friends? Could she go to parties? Could she trick or treat? Could she ever be allowed to go anywhere without me, or her mom? Would she get a driver’s license? Would kids make fun of her? Would she be embarrassed about her diabetes, and tell no one? Would she graduate college? Would she get a job? Would she do what she really wanted to do? Would she EVER meet the right person? Would she be looked upon as damaged goods? Would she ever get married? Would she ever have kids?

Let me start with the last question, first. I just found out that my daughter is pregnant. In July of this year she will give birth. She and he husband could not be happier, we are a close second on that happiness She just graduated with her FNP (Family Nurse Practitioner) and will open her own practice. Do you see the trend occurring? Her life was a simple philosophy, if she wanted to do it whatever it was, we not only encouraged her to do everything and anything she wanted, but helped map a roadway to get there.

We did not have the technology that is available today so yes, we worried about her dying in her sleep. People d today too but we had none of those tools back when. If needed….it was a pot of coffee and determination. We worried about her going so low in a place that we were not, that we thought she would lapse into a comma. We were frightened. We were scared. We knew little. We. Just. Did. Not. Know.

But we did know this.

Learn this mom. Learn it now. Learn it good. There is an equalizer to your child’s life ahead with diabetes. That equalizer is education. Learn everything you can about this disease. Social media is a good place to chat, but it is not the baseline for your education. There is no shortcut either. Read. Learn. Ask Questions. Ask again. Read again. Read more. Find out the correct answers from professionals.

Become a sponge. Absorb everything. Give your child every opportunity to forge the life they want. To conquer any mountain. When our daughter wanted something we figured out a way to say yes. Some times the only reason to say yes was that she asked; and we also knew when there were 30 other reasons why it may not have been such a good idea. But the one reason out weighed the other 30 each and every time, she wanted it, and there was no earthly reason to say no.

We also knew that she lives with a disease. And no matter what we could do, it may take her away from us. We could not do anything about that. But we knew that should that happened we would have to be able to look ourselves in the mirror and answer 2 questions: 1. Did we learn all we could to empower her; and 2. Did she live her life as she wanted. We did that.

After that we walked through life in God’s hands.
Even without diabetes, we all would have to live that way, wouldn’t we?

Then our son was also diagnosed at age 13 in 2009. And we learned all over again. Butt our kids are worth it, right. He was bought up on no boundaries as well,only his imagination. Two years ago, his company moved him to their corporate headquarters and he was one of the youngest person to ever be in his division.

No Boundaries.

In July my daughter will give birth to our grandchild. She has done every single thing in life she has wanted thus far. We know how blessed we are. We also know that there was much work by all of us to get here today. Your child will get there too. Kaitlyn said to all of us in an interview she did with a television news station years ago, “Diabetes is what I have………it is not who I am”. Amen little girl, Amen indeed.

And that same little girl who taught us years ago is the woman who will make us grandparents in July. Pretty cool…….huh?

Learn that mom reading this, your child’s world awaits.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.