Two Moms Change Our Diabetes World

It amazes me sometimes when media skips something so crucial to our diabetes world. Nothing would make me happier than when this story is read, media sources who are so much more significant that my little column here reach out to these two women for the simple reason; their story needs to be read, seen, heard, and witnessed. People need to know that when they make the decision to “just not do nothing“; they can, and do, make a difference.

Many entities and people helped get this to California Governor’s desk (Diabetes Advocate Brett Michaels being just one), but before Senate Bill 97 became part of the highest level of funding bill in California history as part of a whopping 123.9 billion dollars for grades K-12, it started as just an idea. Moms Debbie George and Michelle Thornburg knew that the world could do better at recognizing the early onset of type 1 diabetes (T1D). They knew that it was needed to have the complicated conversations with doctors, nurses, teachers, and school staff on what type 1 diabetes entails, and provide a better understanding of the disease to help ensure the safety of their children, Sierra and Dylan. In doing so, they changed the parameters of diabetes education for all children in the state of California forever…….and it is up to the rest of the world to continue the battle……..but now, there is a treasure map to the promised land of riches; breaking down the misunderstood world we all know with our children living with T1D. Two moms said, “ENOUGH, WE CAN AND WILL DO MORE!”

Years ago when Little Reegan passed away from undiagnosed diabetes, her mom and legislatures in North Carolina passed an unprecedented bill regarding diabetes education. Both moms were in touch with those responsible back then in 2015 and made it their mission to take the same framework of the Reegan’s Rule law in North Carolina, build upon it, and move it through the governing halls of California’s State Capitol. A massive undertaking over five years in the making. When one starts this process, they start out as an advocate. The process is full of twists, turns, setbacks, successes, loneliness, promises of being helped also being broken; all out weighed by one concept, to get the job done. Upon finishing the job, these same advocates are then classified as experts because basically, they did the impossible. They took an idea, a much needed concept, and they made it law. Period.

The law states (click here to read the entire diabetes portion of the bill): The department, in coordination with any other entity the department deems appropriate, shall develop type 1 diabetes informational materials for the parents and guardians of pupils. The informational materials shall be made available to each school district, county office of education, and charter school through the department’s internet website.

THIS IS NOW A LAW IN THE STATE OF CALIFORNIA

THIS IS A BIG DEAL.

For all time, every state now has a road map to do the same. What began with Little Reegan, then moved to Pennsylvania with the efforts of another mom, Debbie Healey, has now graduated to the big time with a law specifically designed for money to be allotted to those undertaking type 1 diabetes education.

My face is streaked with tears as I write this because the deaths of so many paved the roadway for this much needed legislation. Debbie and Michelle have initiated something that is next to impossible to accomplish, and in doing so even created a nonprofit to continue the work they started (EaseT1D.org). More can do the same. Bravo ladies and a huge and deep bow of gratitude from all of us wanting a better world. Somewhere out there Little Reegan is looking down and smiling knowing that she continues working through others to change the world.

God works in that way.

What will you do about it?

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

It amazes me sometimes when media skips something so crucial to our diabetes world. Nothing would make me happier than when this story is read, media sources who are so much more significant that my little column here reach out to these two women for the simple reason; their story needs to be read, seen, heard, and witnessed. People need to know that when they make the decision to “just not do nothing“; they can, and do, make a difference.

Many entities and people helped get this to California Governor’s desk (Diabetes Advocate Brett Michaels being just one), but before Senate Bill 97 became part of the highest level of funding bill in California history as part of a whopping 123.9 billion dollars for grades K-12, it started as just an idea. Moms Debbie George and Michelle Thornburg knew that the world could do better at recognizing the early onset of type 1 diabetes (T1D). They knew that it was needed to have the complicated conversations with doctors, nurses, teachers, and school staff on what type 1 diabetes entails, and provide a better understanding of the disease to help ensure the safety of their children, Sierra and Dylan. In doing so, they changed the parameters of diabetes education for all children in the state of California forever…….and it is up to the rest of the world to continue the battle……..but now, there is a treasure map to the promised land of riches; breaking down the misunderstood world we all know with our children living with T1D. Two moms said, “ENOUGH, WE CAN AND WILL DO MORE!”

Years ago when Little Reegan passed away from undiagnosed diabetes, her mom and legislatures in North Carolina passed an unprecedented bill regarding diabetes education. Both moms were in touch with those responsible back then in 2015 and made it their mission to take the same framework of the Reegan’s Rule law in North Carolina, build upon it, and move it through the governing halls of California’s State Capitol. A massive undertaking over five years in the making. When one starts this process, they start out as an advocate. The process is full of twists, turns, setbacks, successes, loneliness, promises of being helped also being broken; all out weighed by one concept, to get the job done. Upon finishing the job, these same advocates are then classified as experts because basically, they did the impossible. They took an idea, a much needed concept, and they made it law. Period.

The law states (click here to read the entire diabetes portion of the bill): The department, in coordination with any other entity the department deems appropriate, shall develop type 1 diabetes informational materials for the parents and guardians of pupils. The informational materials shall be made available to each school district, county office of education, and charter school through the department’s internet website.

THIS IS NOW A LAW IN THE STATE OF CALIFORNIA

THIS IS A BIG DEAL.

For all time, every state now has a road map to do the same. What began with Little Reegan, then moved to Pennsylvania with the efforts of another mom, Debbie Healey, has now graduated to the big time with a law specifically designed for money to be allotted to those undertaking type 1 diabetes education.

My face is streaked with tears as I write this because the deaths of so many paved the roadway for this much needed legislation. Debbie and Michelle have initiated something that is next to impossible to accomplish, and in doing so even created a nonprofit to continue the work they started (EaseT1D.org). More can do the same. Bravo ladies and a huge and deep bow of gratitude from all of us wanting a better world. Somewhere out there Little Reegan is looking down and smiling knowing that she continues working through others to change the world.

God works in that way.

What will you do about it?

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’.