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’.

Different Races, All Trying to Help

A few people I know attempted to do something this weekend that, I guess, one could say that they had no business to attempt.  Both had to do with feats of running.  Both have ailments or other reasons why their bodies are not meant to run.  I have no idea how long, or even if, they trained for these runs.

My cousin trained for months to run in the NY Marathon last November in New York City.  My cousin’s training was being done at age 77.  He did it all under medical supervision and he ‘did it right’ from all intent and purposes one undertakes these endeavors.  Just prior to the race, while training, he collapsed in the street and a passerby performed CPR, it saved his life.  It’s been a haul but my cousin is a fighter and the closeness he has to his own family, well that makes the fighting worth it.

He was running to bring attention, education, and a few bucks to Autism which has hit out family, and hit it pretty hard.  The other two I referenced at the onset were doing it for diabetes awareness, education, and a few bucks to a foundation in which they believe in for diabetes, our family knows about that as well..

THEY ARE ALL, HEROES.

They chose to live by the phrase, Just Don’t Do Nothing.  Make no mistake about it, just because they may not have made it to break the ribbon at the end, they accomplished their goals.  In fact, in one case, her story was so moving I donated to her cause.  Had she not been challenged beyond physical  endurance; I never would have known her story.  Her story pulled at my heart. Her apologetic tone of being unable to make it to the finish line captivated my attention.  As I read her story my mind was continually filled with one of the greatest lines ever uttered in movie cinema history from Lord of the Rings, “…….my friends, you bow to no one!”

Anyone who decides in their head, I will attempt this, crazy as it sounds, they get my attention and they should get your attention as well.  Someone else has REALLY peaked my attention recently because she is attempting to do something almost as impossible as well.  She is running a different kind of race and in my humble opinion, we probably should pay attention.

Quinn Nystrom is running for Congress in Minnesota.  She is an author (If I Kiss you, will I Get Diabetes), a tireless advocate for diabetes, and a person who has lived with the disease.  Quinn has held elected office as the youngest person ever elected to the Baxter City Council.  One of the reasons she is running for Congress is because of unaffordable health care, she knows firsthand about the cost of insulin.  So many times we tout and shout, “If only we had an inside to Washington.”  Well now is your chance.  I’m doing what I can to help Quinn get elected, because I cannot vote for her.  But I also KNOW WE NEED A VOICE in Washington DC; Quinn’s voice.  Go to https://quinnforcongress.com/ and figure a way you can help also.

All of these individuals, although running in completely different races, are running because they cared enough not to sit on the sidelines.  I’m in awe of their efforts and I know there are so many more trying to make a difference.  But the only way to get in the race, is to start running.  What will you do this year?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Living Life is so Much More than Diabetes…..NEVER Forget It!

Life was normal. Perhaps a trip shopping or a relatives house. Your child starts to complain about stomach aches, nausea, but the flu has been going around.
It’s just the flu honey.
Yeah, the flu I’m sure.
But the clock is ticking.

Your child is home from school.
This is different, honey. I should take her to the doctor’s office.
Tomorrow, we’ll see tomorrow.
But the clock is ticking.

If you have a child with T1D, the first two paragraphs should have caused a little anxiety. Perhaps you are brand new. Perhaps you have been ‘at it’ for years.
It’s diabetes. It’s the way it is. It’s the way it’s going to be until someone untangles this mess and comes up with a cure.

Stop blaming the pharma companies for ‘hiding a cure’, they’re not. If we have learned anything it is that if one entity is ‘doing it’, others also know how. So ‘hiding it????–not so easy. Diabetes is just that complex. But many are working on it. Many. Technology of today is so much better than the technology of yesterday, and tomorrow’s will be THAT MUCH better. We’ll get there. I’m more sure of that now, than when we started this journey on September 26th, 1992

So buckle your seat belt and keep the focus where it needs to be. On your child? Not necessarily just on your child but on getting your child back up and back as close to life as it was before diagnosis. That’s our job, as parents. If you are divorced, hear me, that is still our job as parents. Nothing matters more.

The psyche of diabetes is as important as the management of it. Get your child back up and back into life. Be strong, but understanding. Let them lean but don’t let them sit. Get them back to where they were. That’s our job as parents. Cry? Sure but not in front of them. If they want to cry, let them. Guide them.

I have known thousands of families where diabetes entered the household. The kids have done incredible things to fulfill their dreams. There are always ‘what about—what about’, that ‘might happen’ but only take them on when you have to. Otherwise, let them do what other kids do……after all, that’s what they are……..kids. Upon diagnosis, they did not turn into glass, don’t treat them as if they have. Hear me clearly, do not just poo-poo this disease, it’s a monster. But all monsters can be trained. Train it, or it will own you. Don’t let it. I’m certainly no smarter, better, nor stronger than you. I asked the questions of those who have been through it. I found answers.

My oldest son is living his dream. Not your dream. Not someone else’s dream, His dream. He runs into fires when others run away. He works patrolling the grounds of NY State. He works hard, he plays hard. He gives back. He is where he wants to be. My youngest two children each have type one diabetes, and you know what, they’re living their dreams as well. They all have someone in their lives to share everything. They are all living life.

That’s the goal. It takes work. But as I said, I’m no smarter than anyone else but we made sure our kids had choices. They made good ones. Let yours do the same. Don’t let one ounce of your precious energy be wasted in any other way. Period.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.