Lisa Awards 2019, Powerhouses in Our Diabetes World and One Special Son

Ten years are a long time.  I just cannot believe that ten years have gone by that our sweet Lisa left this world.  But she went out with a voice shouting from the mountaintops and it is 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 is 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 award 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:
 
Aaron Kowalski, Ph.D. — CEO, JDRF — A 15-year veteran of JDRF and the first person living with T1D to lead the research organization, Dr. Kowalski has a strong record of spearheading impactful strategic initiatives and forging new partnerships from his previous role as JDRF’s first Chief Mission Officer.  But Dr. Kowalski is not a recipient of The Lisa Award just for his new role as JDRF CEO, it is because of his unyielding desire believing that good, is not good enough.  No matter where you look; running, riding, testifying, lecturing, one-on-one conversations and/or leading, he is a true living example of how important this Power of One truly is, he lives it.  Make no mistake, he will credit those he works with before taking credit himself, which only makes him even more deserving of this award.  When it comes to true diabetes advocacy and understanding what this world needs to become for a better world for himself, his younger brother, and the rest of the world living with this disease,
Dr. Kowalski is the absolute “Real Deal”.   I have had the pleasure and privilege to be side-by-side presenting with Dr. Kowalski and working with him in other dealings, and his brilliance is only outdone by his compassion to making a huge and true difference in this world of diabetes.  Great things lay ahead.  Power of one; indeed.


Kim May — President/Founder Nobox Creative — or perhaps she should better be known as supermom.  In addition to being the owner of a hugely successful Ad Agency in Amarillo Texas, Kim has never forgotten the day that she laid her almost lifeless son, at the age of four and with a blood sugar of over 1000, on a hospital gurney stating for the staff to get to work on saving her son from a newly diagnosis of type 1 diabetes.  Already a powerhouse in the community, she co-created GetDiabetesRight.org, a site dedicated to allowing people to download creative posters to be used for diabetes awareness within their communities on the warning signs of diabetes and what to do when these signs become evident.  Hundreds of thousands of posters have already been downloaded and distributed  Not nearly done with her efforts, Her Power of One continues as one of the founding and continuing Board Members of the Diabetes Foundation of Higher Plains in Texas which runs a camp each summer and also funds diabetes research.  She and her husband, Jentry, are hugely dedicated to their family and her two sons’ MANY activities, as well as the community they live.  Kim has left her mark on everything from museums, to churches, to Amarillo and Connect Magazine, to so many things diabetes.  Her Power of One is unyielding although she too, would be the first to say, she has a lot of help.

Matthew Carlinsky — Lisa and Mark’s Son.  As soon as I knew that Matthew would be one of the Lisa Award recipients this year, I wondered how far I would get before i completely lost it and the tears would flow.  For the record, the tears started before I finished typing his name.  And I’m sure they will continue, so I will just keep going.
The main reason for the tears is that Mark’s upbringing of Matthew and the fine young man Matthew is turning out to be is EXACTLY as Lisa would have wanted it.  Mark is not easy, he has always demanded striving for the best, mostly in himself.  To be able to do that in also a loving way to a son, and as a single parent is no easy task,  But right back at him, Matthew is no lightweight either. They surely bring out the best in each other. At the age of four, Matthew was dealt a blow that no child should ever have been given.  He lost his mom.  There is no doubt that Mark has kept Lisa’s memory deeply arrive in Matthew and it is what Matthew has done with it that, he too, is being awarded a Lisa Award.  It’s important that one remembers how important this award means to me, and remember what I have stated in the past, I do not give it lightly.  Matthew has not only accepted his Mom’s Power of One, he has come to own it.  As it was important for him to be helped by The Family Lives on Foundation, Matthew knew that in his Mother’s memory and teachings, it was time to give back, even at his young age, and give back he does.  Through the organizations “Traditions Program” kids get to relive an activity or tradition that was special to their parent.  For Matthew and Lisa it was Holiday and Birthday baking.  Cookies and cupcakes.  Matthew states that, “The Traditions program definitely helped me cope with the loss.”  But more than that and realizing that his Power of One could make a difference, Matthew turned all of this into a month long awareness and fund raising effort.  Being a member of his Oyster Bay High School’s National Junior Honor Society (which I’m sure mom smiles down upon as well), Matthew enlisted the help of his fellow students to raise the highest amount of money the high school chapter has raised in 17 years.  (Side note under the full circle ‘small world’ title, My wife, Jill, was a graduate of the same high school).  In the picture above, gone is the little boy sitting in his mom’s lap replaced by a strong young man and the photo shows Matthew addressing the crowd at the Foundation’s Annual Ball in Pennsylvania thanking them for recognizing his efforts.  He pledged to continue assisting Long Island Families involved with the Traditions Program.  Even as a ninth grader, Matthew is an absolute living legacy to his mom who believed that One Person can make a difference no matter where they are, or where they go, or what they do.

Congratulations to this year’s recipients.

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

 

 

Cheerleading for Diabetes Awareness, with a Heart Bigger than Texas

It was exciting to learn that this year the NFL’s program My Cause, My Cleats would include the Diabetes Research Institute as Raven’s Tight End, Maxx Williams, would wear custom-made cleats recognizing the work of the DRI scientists.  This program allows NFL players to wear custom cleats in December.  In fact, many, many players take part and usually auction off the cleats to raise money for the charities they represent.  Quite a few diabetes organizations were represented in the NFL this year (Branden Jackson/ADA; Jarvis Jenkins/JDRF to name just two) and social media got into sharing so many of their stories.

As is the nature of social media, one never knows where a simple post will continue.  One story, and a video in particular, really caught on.  Interestingly enough, it was not a story about a football player, it was about a professional cheerleader.   As the
My Cause, My Cleats was being unleashed, The Dallas Cowboys Cheerleaders (DCC) were releasing an effort of their own called My Cause, My Boots.

And how social media responded. And how the diabetes community cheered the loudest.

As any football fan will tell you, ‘dem boots worn by the Cowboys Cheerleaders’ are as much known as the Dallas Star that is worn on the team’s helmet.  Run a little differently, DCC’s My Cause, My Boots is more about the cause than a particular organization and I was given the incredible opportunity to interview a member of the DCC who, as it would turn out, has a very special reason to discuss diabetes, and to take it from the sidelines to center stage.

Tess, thank you for taking the time to discuss your choice to use the DCC platform to bring awareness to type 1 diabetes.  How long have you been a DCC?
Tess: I have been a Dallas Cowboys Cheerleader for the past 3 years.

As I prepared for this interview, I learned that Tess was actually a dancer through all of her life and to me, what being a Radio City Rockette is to those who dance, a Dallas Cowboy Cheerleader is to those who have ever cheered.  It’s the icon for perfection in the industry.

Did all of the history play into your mind as you worked to become a DCC, how so?
Tess: I never actually cheered BEFORE cheering for the Dallas Cowboys.  I was on dance teams, but not cheerleading.  I danced all through college at LSU and in fact my first Dancing was at a LSU football game which was in the Dallas Stadium, coincidentally.

Yes it did play into my mind. You’re in the stadium.    But it was more exciting than it was intimidating. When I ‘did get the call’ (to be a DCC) being back in the same place it all started, and in this new and different role, was certainly a moving experience.

It’s no secret there is just so much outreach in communities all across the country with NFL Programs.  One, in particular is My Cause, My Cleats where players wear cleats adorned with their favorite charity in a special design. DCC came up with My Cause, My Boots?  Of course My Cause, My Cleats is a close relative to My Cause, My Boots…..can you share how the idea came about for the boots?
Tess: My Cause, My Boots came about, and as far as I know we are the first team which started last year with the boots.  It was just an idea.  We started by trading out one pink ‘star’ for one blue star on our vest and we had a pink star on our boot; and our directors thought it would be an incredible idea for us to choose our own causes.  And they worked with Lucchese Bootmaker, the official bootmaker for the Cheerleading Team, on what we could do with our boots for a cause close to each of us.  We had a pink star that first year and in the second year the thought was how to expand that original idea, and what else could we do with the star.  So, we gave them our cause and Lucchese Bootmaker was very creative in utilizing just that one star to not include various charities but also to be individualized to represent so many charities with so many different and unique designs.  They did all sorts of different ideas. I chose diabetes and sent them the ribbon with the blue and gray colors with the blood drop seen in so many places and that is all I did.  Their hugely creative team came back with the little red heart in the corner of the star.  Simple, direct, and powerful. So yes, we were the first team I believe to do something like this, we can only hope it spreads and more cheerleaders get involved.

Tom: When I first saw it, I actually sighed because it was very clear what it represented.  The phrase ‘Deep in the heart of Texas’ took on a whole new meaning.
Tess: Oh good, I am glad it was clear.

You did this for Troy, your boyfriend.  Could you share those series of events?
Tess: Troy and I met in December 2016 and he was diagnosed in September of the same year.  I was not there; the hardest and worst time at diagnosis…but since we met I have gone through this progression of being by his side.  I’m a big animal lover and last year I chose Animal Rescue as my charity as I have a cat I rescued.  This year, many of the team members chose to honor people they knew living with different diseases and I thought it would be a nice honor, a nice gesture, for Troy if I chose diabetes.  I thought it would be a nice surprise for Troy.  Again, I had no idea what the design would look like.  I never mentioned it, I never spoke to Troy about it.  He never knew about it until the boots were made.

Could you share a little of his reaction.
Tess: We all picked the causes in September, and did not know what the final result would be.  About a week before we received the boots, I shared with him, ‘Remember last year when I picked purple for Animal Rescue for my boots as a cause, this year I wanted you to know that I chose type 1 diabetes for you’.
It was a very special moment and we both became pretty emotional.  He was shocked, he couldn’t believe it.  They surprised us when the boot came and I rushed home and opened the box and it means a lot to me that you said you knew right away what it meant.  It was a very special moment when I saw the boots for the first time.  He was very excited, took pictures and sent them to his family.  It truly was just very special.  What I liked about it was that it was more about awareness of the disease as oppose to linking to a specific organization.  It was about honoring someone you know, someone who has the disease, and supporting THEM; and that was an incredible feeling.

So now, it’s out there.  The My Cause, My Cleats is out there and so is My Cause, My Boots.  You make your awareness video and the social media explodes.   What started as a simple gesture…..‘bam’ it goes everywhere…..what was that like?
Tess—I quickly realized, as I expected it to be, that it was going to be more than just a simple gesture.  Taking advantage of the platform I know that I have, that we all had being part of the DCC, and being able to reach more people and especially just to be a light to this whole community was overwhelming.  Last year the idea of My Cause, My Boots was new.  This year we had more media and people were expecting it.  My cause was highlighted by an accompanying video.  People were already sharing stories and reaching out to me saying they saw that I chose type 1 diabetes even before the boot, as a finished product, was being shown.  So, I knew from the get-go that this was going to be so much more than just me wearing a different color, or something different, on my boot.  I knew that it was going to reach a lot of people because this community is just so strong.  And because they lean so much on each other for support.  I have seen this before, I have seen this with Troy.  It’s a big thing to know others are out there and to also know you are not going through this alone.

I saw your video as you spoke about Troy and what he goes through with his t1d.  Being a father to two children with this disease, it was very moving.  Could you expand a little bit on what you see him go through, he’s an athlete……right?
Tess: Yes.  He plays baseball and played at LSU.  And played before he was diagnosed.  He was always an athlete and he was playing and also having type 1 diabetes before anyone caught it.  Maybe they thought he was too old so no one checked, no one is sure why, for whatever reason; he went on struggling with it without him knowing and without others knowing what it was.  He went to many doctors.  It took one really bad episode where his blood sugar topped out over 800 for everyone to realize what was going on.  He was 22 when he was diagnosed.  He quickly handled it.  He got this (his management) to where he could play.  Late diagnosis, but early enough.  And he played then, and he is playing still.

 

Tom–After him sharing all of that with you, what would you say to someone who was newly diagnosed?
Tess: I’m surely no expert at this but as I prepared to make the video, and learned what I needed and saw the video that I made had over 70,000 views, it just highlighted to me how much more I need to know and educate myself so I can figure out how to educate others.  As I learned from Troy, and I know you know Tom, I know it’s not my disease.  I can only do so much.  It’s Troy’s disease.  I can do just so much but what I can do is be there, offer words of encouragement.  I’ve seen him struggle with it but I also have seen him come out the other side and truly follow his dreams.  He keeps going.  We all see others succeed, even doing so with what burdens they have to bear having this disease.  Those stories uplift him.  He’s now one who can inspire others. He is the perfect example that you can keep going, it does not matter….you can do whatever you want.   He says, “The less you control it, the harder it is to control”.

My saying is that you must control it, or it will surely control you.
Tess—That’s a good one too, I have to share that with him.
(I laugh) Yeah but I have 26+ years at this…..he surely learned much faster than I did as a parent.  I’ve had a few more years at it for sure.

Now that you have started this, do you see yourself continuing advocating, helping, etc.?
Tess: Short answer, yes.  But I have so much more to know.  When I started this, I knew I had to become educated and I know I have to do more to understand what this disease is about.  I knew of this disease.  I knew there was a difference between type 1 and type 2.  But living beside someone who lives with it 24 hours a day is different.  I gained a new appreciation.  To know…..just……just how near death Troy must have been, was terrifying.  That’s something that was new to me.  Something that I did not know was going on.  I think that in itself is enough to bring awareness and I hope to raise resources to share that story because it’s incredibly powerful.  Maybe it can prevent someone from going through what he went through.  Maybe if they hear the story, they will see and know the symptoms whether it was a child, or an adult.  Even if someone says, “I heard something like this and do you think it might be diabetes”?  Even that would be an incredible start.   To educate.  I mean I have seen already, hearing ‘My child, my dad, my whomever…….’ is just so amazing to create a connection.  So yes, I will continue on this path and I know it’s a dream of Troy’s because he knows how important it was that people helped him.

Your video was spot on and resonated with many people.
Tess: I tried to stay focused on the person I knew and not try so hard to explain every aspect of the disease…it’s complicated and it means a lot to hear that we were close to the mark.

As I said—spot on the mark, if you ask me.
Tess:  Thank you that is good to hear.

As my readers know, I like to end my interviews by giving a word or short statement, and ask you to share the first thing that pops into your head, either one word or short phrase. Is that okay?
Tess: Sure

Diabetes?
Tess: Troy

Dance?
Tess: Love

Dallas, the City.
Tess: That wonderful skyline

Dallas, the Team?
Tess: Represented by Cowboy Hats.

Troy?
Tess: Strength

A newly diagnosed child?
Tess: Fear.

Thank you

Tess: Thank you for setting this up.  This is the reason for My Boots, My Cause and I hope this can continue and I appreciate the opportunity.

It’s very clear that this incredible couple will be heard from again, and again, and again in the future on this new journey.  A journey for diabetes awareness.  They will save lives as they continue to use their respective platforms to educate those who might not even know what diabetes is, what diabetes looks like, or even what the warning signs might be.

Saving a life, methinks, would be better than even winning a Superbowl.

I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

2018, The Year People Died Because of PURE Greed.

There was a chill in the air as 2018 nervously tapped one leg than the other.  Every other year had to wait outside and 2018 was sure it was planned to be made to wait until the Boss came in.

The Boss came in out of breath and stood behind the desk, red-faced and staring at 2018.  Both did not speak at all for what seemed like an eternity.

Really?  Really 2018?  Each and every year I had to let your predecessors go because they did not fulfill the goal of finding a cure.  It’s a mandate of every year to take us closer…….to find a cure.  But you, 2018, you did the complete opposite.

2018 started to speak; I……I……I’m not sure……

The Boss broke in; Hush up.  I’m furious, 2018.  Livid.  Angry. Disappointed.  And I won’t even get to the subject of a cure.  Not at all 2018.  I have one word that continues to infuriate me.  One word.  (screaming now) Do you know that one word, 2018…..do you know the word?

2018 stared down at the ground and the tears uncontrolled spilled out of each eye and fell to the carpet below.

Yes, I think so.

The boss leaned forward on the desk and burned a hole into 2018 with a stare both steaming hot and frigid cold at the same time.

Insulin, 2018…..the word is Insulin!  Every year before you 2018, made an argument to be kept even though a cure was not found and quite frankly, I owed it to them to consider—-to almost allow them to continue based upon some of their INCREDIBLE advancements,  but not you 2018.   CERTAINLY NOT YOU!  How could something so crucial be kept out of the hands of those in need based solely upon cost?  REALLY 2018……it’s money?  Greed?  Pure Greed?  And it does not lay at the feet of the Insulin Companies, that is too easy an answer, and it is not an accurate one either.  There needs to be open disclosure…..the Insurance companies, the retailers, and most of all; the PBMs (Plans Benefit Managers).  Buybacks, rebates, and everything else that adds to the burden of the patient.  I’M SICK OF IT 2018! DO YOU HEAR ME?

The Boss stopped.  Just stared at 2018 who had nothing to say.   No defense.  No words, No retort. No possibilities.  Just……..nothing.

The Boss spoke almost in a whisper.  People died this year 2018 because of utter and stupid greed. People were forced to ration their insulin, and some plainly had to go without.  Shame enough for all.  Everybody pointing fingers at someone else.  “Not my fault” said by almost everyone.  And yet a son, a daughter, a mom, a dad, a relative, a person who was loved was buried, 2018, because they could not afford the one thing to keep them alive………………………………(The Boss yelled)  Insulin, 2018, INSULIN!!!!!!!!!

The silence was deafening.

The Boss with face covered and a whisper of a voice.:
Just get out 2018.  The cure wished for was actually overshadowed by people who cannot afford their insulin.  They died, 2018, they died.  Just get out, you were the biggest failure I’ve ever encountered in all my years.

There was nothing more to say.  2018 got up and walked out never even turning around or uttering another word.  As 2018 opened the door, left, and got into the elevator; the Administrative Assistant hurried into the Boss’ office.  The Boss stared out the windows behind the huge oak desk.

Should I send in 2019, Boss?

The tears rolled down both cheeks of the Boss.
Give me a minute.  (Sigh) Hopefully 2019 will have the correct priorities and we can focus back on that cure.  Someone needs to make a difference.  Insulin must become affordable for all.  Let’s hope 2019 is the one to do so.

We can hope so Boss, we can surely hope so.

The Boss sighed.  Show in 2019.

I am a DiabetesDad.
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An Annual Tradition……Twas the Night Before D-Christmas 2018

With special apologies to Clement Moore.   I present what has become an annual tradition……an updated, ‘Twas the Night Before D-Christmas for 2018

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; CGMs enough to fill a bin,
All so new and even under the skin,
Insulin is still with a cost way too high,
Government should act, stop asking why.

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

The voices were loud and the voices were clear,
We will shout as one, we all have no fear.
Insulin is not a luxury, stop causing such strife,
Insulin for all it is needed for life.

Many things were good, many things were fun,
Diabetes awareness campaigns are still being done.
The word is important for everyone to hear,
Capitol Hill is hearing our voices, we’re getting in gear.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

The life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they all get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

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

Could it be; a Patch that REALLY STAYS? Take a Look and Try for Yourself.

As many of my readers know, I do not use these pages for advertising.  If I find something that can help, solve a problem, and/or make diabetes life any easier, I share. To be clear: I have received no remuneration for this article, I’m sharing about this product because, quite frankly, it just does what it’s supposed to…….stay on.

I hope it works for all, but in fairness I have not seen it on everyone so I can not say 1000% that it will be for everyone.  And of course if you have any hesitation, ask your medical team about the product after you visit their site and find out more.  That said, and the disclaimers aside, if you ever had a problem with your patch you may want to read carefully.

StayPut Medical is a series of patches created by Mike Mangus (founder Pres./CEO) because he heard from so many while in his prior jobs what a problem these patches are/were with the medical devices supposed to stay on, including those devices worn by people with diabetes.  I saw a group of moms talking about StayPut and then I gave a few to people I know; and each one said the patch made an incredible difference.

So now I share with you.

You can click the link above on Mike’s site where you will find a boatload of information,  how this all came about, and also how you can receive a free sample ($1.99 for shipping and stuff).

Good luck and let me know what you feel after you try them.  And also share this on sites where this patch might help others.
I am a diabetes dad.
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A Favor……Perhaps……..Could be Times 4!

As many of you know, I rarely utilize this column for anything more than the articles to hopefully teach and inspire,  But there is this incredible opportunity given to the Diabetes Research Institute Foundation that I’m sure hoping you will join in and help.

The Sola Sweet company, from now until the end of November –Diabetes Awareness Month—-will match every dollar up to $10,000 donated on the site listed below—-we already have over $1600.00.  And to make it even better; we also have another match from a Foundation that will match that $20,000 donation as well.   It’s too good an opportunity not to ask if you would be so kind and help.

Go to this site on FaceBook:
https://www.facebook.com/thesolacompany/
……and donate today.  November is Diabetes Awareness Month, Tomorrow is Giving Tuesday, with everything your $20 donation would be matched to make it $40, and that entire match would be matched again to make it $80.00…..so EVERY donation will be multiplied by 4……please donate today.

Any questions, feel free to shoot me an email at tkarlya@drif.org

Thank you so much for caring so.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Painting Your Child’s Diabetes…..Careful, it’s Not your Canvas

I saw a picture this week, a child in a hospital and the person who posted it wrote that this was their life with diabetes, that no one knew what they went through, and this is their world every day, all of the time.

As I read this story, I felt bad for two reasons……the first, and obvious, is that no one wants to go thorough their life with a child in a hospital for any length of time. The second is that this person truly believed that this IS their ‘world, every day’, how sad.  Our life was not this, ‘every day’.  From my kids’ point of view, yes they have a disease. Yes it sucks.  But they hit it head on and move through, on, and/or around but they do not stop due to this disease………….ever.  They accomplished what any other child WITHOUT diabetes accomplished.

Bad days?  You bet.   Time they want help to take a break from a CGM and/or a pump?  Of course.  But for the most part they realized the only way they can move forward is to……well, move forward.

If I was a child of fourteen-or-so in a hospital stay from  a low blood sugar, I’m not so sure how thrilled I would be if my dad posted a picture of me on social medial for the world to see.  If you think that it does not matter to your child, you better think again.  And if you think that they do not see things like that on social media……..you better think about that again as well.

It’s a tough balance because; for whatever diabetes charity one is involved, it’s important to move people to give and help those causes, and that is great, but also do not be afraid to ask your child what they think on the picture you are about to post or the story you are about to tell.  Ask them.  And listen to their answers.

When I write or I post, I have guidelines from my kids.  Twenty-six+ years into this I still remind myself daily that I do not have this disease.  I do not know what it’s like…..not for one second.  I respect their space, their feelings, and how they want the world to see their diabetes.  It’s not my disease.

I can speak from/as a parent but that is all I’m allowed to speak about without asking them.  Richard Rubin, one of the leading psyche-social-aspect-gurus of all time taught the meaning of the balance of respecting our kids and helping them understand that their life is not ‘just an open book’ because we think it should be.

Remember this the next time you are trying to make a point about this world of diabetes.  Know that this word is your child’s world 24/7/365……if you think you own it, your children will never learn to.  And the faster they take it on as their own, the better you will all be.  Help them through ALL OF IT but don’t assume you have rights without asking them.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Tennis Balls and Syringes; How the Diabetes Ball Bounces

Here we are for our 27th Diabetes Awareness Month.   Ahhhh November.  The thing I always share with parents is the fact that no matter how much time we spend on this journey, whether diagnosed last week, or 26 years ago, it makes sense to look back to the beginning and realize just how much we learned.

Because whether it is a short time, or a long time, one thing I know to be true is that no matter how much time passes, we gain knowledge every day.  Don’t we?  We start with the realization that we have no idea what this disease is about, and how to handle it, to meeting with newly diagnosed parents sharing with them that they too can do what we all have done.

One-day-at-a-time—–and breathe.

The other day I saw a tennis instructor working with a young pupil.  A basket full of tennis balls accompanied the teacher.   I’m not a tennis player and know little about it other than what I learned the times I tried it in my youth.   This was a new visual for me.  Tennis ball after tennis ball after tennis ball went from instructor’s racket over the net to the student’s racket.  It clearly was a practice they had done hundreds of times because the student knew, without a spoken word, when to move to different parts of the tennis court, or to use a backhand or overhead swing.  It was fascinating to watch.  Hours and hours and tens of thousands of tennis balls……tennis ball after tennis ball after tennis ball, again and again and again.

Every now and again the student would get frustrated because a shot was missed.
“Grrrrrrrr” came the noise.
All for one goal—-perfection.

We, too, do the same thing when it comes to our children and their diabetes management.  Again, and again, and again we try, striving for that perfection.  Perhaps we need to give ourselves a break sometimes because we are going to be right back at it tomorrow, and the next day, until such time that the ‘break’ we wait for arrives and this disease is cured once and for all.  But until such time it’s injection after blood check after treating a low after injection after blood check after treating a low after injection after……..

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

Our Child’s Scariest First Dive

This may not be big news to anyone, but my little guy gave himself his own shot today.
Point: This IS BIG NEWS to anyone who understands that our children, once diagnosed, not unlike us; face incredibly ‘firsts’.  To me whether you are jumping off a cliff into water 80 feet below or taking an injection of insulin for the firs time——the unknown….is just that…..unknown.

Having the courage to say, “Mommy, I want to give myself my own shot today.”  Well to me, that is a huge step in the life of a child living with diabetes.  To begin to say, “This is my disease, I want to take control of it.” That’s huge and is a big step in any child’s life.

We, as parents, as much as we may try, have no idea what this might be like.   Think about it.  One is diagnosed.  Months go by and hundreds of blood-checking and insulin shots have occurred in your little one’s body.  They watch, but they really do not understand everything, they might nor even understand much at all.  But something clicks in their little minds; Why is mommy doing this to/for me each and every time, numerous times a day?

They ask themselves that question.  And each time, for days and weeks, they watch as insulin is given.  And at some point it hits them; why does mommy have to do this, I can do this.

Then, for a number of times, they ask the question inside their own heads at first.  Not sure what it means nor what you will say when they ask.  Again, again, again, and again they watch and the words are on the tip of their tongue.  Then, as if a voice from way down deep inside pushes their tiny thought our of their little mouth;  Can I give myself my shot today?

The world stops dead-in-its-tracks as parent and child stare at each other.  Almost as if the disbelief from the one hearing it,  is matched by the disbelief of the little one saying it.   They stare at each other.

Mom will speak first.

Ah……um…….sure honey.  If you want to try it.  Sure.

Mommy smiles as she hands the insulin to the waiting child.
The child has seen it hundreds of times, they know what to do.
Still, there is that moment.  That moment of the unknown.  The child does it, takes the injection, lifts the needle out and looks square into the eyes of mommy.  The child smiles.
See mommy I knew I could do it.
Mommy smiles and hugs her child tightly.
Yes baby, I knew you could.

The child runs and goes to continue playing outside with the incredible feeling of accomplishment.  The first step in taking on their diabetes.

Mommy smiles until her child leaves the room and is outside playing again.
She drops on the bed and cries her eyes out.

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

 

A Small and Gorgeous Country…….We Could Learn Much

I just arrived back home from vacation.  Once a year I try to ‘get away’ as they say; because a battery drained is no use unless it is charged, this charges the batteries.
While visiting the country of Jamaica, two things truly stick out in my mind.  One was  speaking to/with the hierarchy of where I was staying as their ‘brand’ is located throughout the Caribbean and might be able to play a valuable role in our (the Diabetes Disaster Relief Coalition) efforts in helping people with diabetes during hurricane season (okay, so I don’t ‘turn off’ completely) in the many islands that seem to get hit the most…..we will see if these conversations become fruitful, time will tell.

The second thing that truly stuck with me were the people of Jamaica.  What they lack in size, they make up with pride.  As one travels the country, it is quite clear that money is not plentiful, possessions are not plentiful, and many parts of the country have much less than others.   Workers, every-day people, supervisors, drivers, elected officials; what is clear is that, despite the lack of what many of US would call ‘our rights of possession’, these people do not need and hold dearly their right to LOVE their country.  It’s no wonder their Country’s motto is so well accepted, Out of Many, One People.

I had the wonderful opportunity to hear from so many who call Jamaica their home.  One woman shared that she was not in favor of the political power now in control of the government of Jamaica.  “There are three, really two, political parties in my country.  I did not vote for this one.”  When I shared the political divide in our country she continued, “…yes, of this we are aware.  But in my country, so rich and full of so many things, no one person could ever take away how I feel for my country.”

No one person could ever take away how I feel for my country…..let that sink in a bit.

It struck me that, even in our diabetes community, we sometimes forget how much we do, actually, have.  We surely do complain at the drop of a hat on something being unfair, and that is within our rights.  But when we look upon landscape of all things diabetes, and for that matter in our country, have we forgotten how blessed we are? Does one person, or one entity, control us that much that we forget what we DO HAVE? Does one person or one entity stand that strongly that they hold us to stay focused on only what is bad and what divides us; whether it be the cost of our medicine or the system of politics in which we disagree.

One transportation driver shared with me that he was not so sure why we allowed the bitterness to even exist.  “In my country, mon, we do not understand why Americans are so angry when they have so much blessing.  Why does one thing, one event, or even one person, get all the attention. With this, we do not do here. Life is a celebration, mon.”

I could write on and on.  But my question is a simple one; which one of these control us; our anger or our love for all that we DO have?  Do we remember our own country’s motto which we have all heard for years and years……E Pluribus Unum? Do you know the translation of Out of Many, One.

Seems our friends of the sun drenched tourist destination of Jamaica, small and poor as they are, understand it a bit better than we do.   Perhaps we should follow their lead on knowing out of many, we truly are one……..or should try harder, at least, to be so.

I am a diabetes dad.

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