24 Years Today….Why are We Told that a Cure Should be an Afterthought?

Kaitlyn  JObThat’s right…..24 years to the date.  the life of a family would change…..and change forever.  The interesting thing about our journey is that twice a year I really sit down and reflect on the world we now call ‘normal’.  At this point, it’s not ‘the new normal’….it’s the normal that has moved in, and surely not new anymore.  I do it every September 26th (today) and every March 20th (when our daughter and youngest son was also diagnosed).

24 years is a long time.

I have this very strong feeling that we parents have been told, or convinced, that great technology for our kids is really all that matters.  Sure the cure will be worked on but it is technology, technology, technology for better management tools for our kids.  Better tools?  you bet’cha.   But that promise I gave my daughter 24 years ago to find a cure is still my driving force each and every day.

From a guy who has been at this for 24 years, I have watched as the world was made to marvel at an insulin pump, a cgm, long acting insulin as THIS is what we needed to work toward.  When they each arrived, the next thing was dangled before our eyes to marvel at and of late, it is the bionic, artificial, closed-loop-type pancreas devices.

To be clear, CRYSTAL CLEAR, I think it will be great.  And I’m also convinced that as soon as it gets here, we will then be told it is time for the entire device to be an internal device….and that will get all of our attention until THAT occurs.

My point?

Why am I made to feel that my desire for a biological cure needs to be moved to a back-burner.  I think it’s time for the parents’ voices to once again be raised for energy to go towards a cure; reversing this disease in our kids still living with it.   Somewhere, somehow, I feel like THAT voice was told to shut up because it’s too hard or that it will never happen.

Says who?

It was the parents’ voices that raised up the belief for buildings to be built and organizations be created to find a cure in the first place for the disease that impacts our children.  Not find a cure if it’s easy to do.  Not a find a cure if it can happen quickly.  But search for a cure until we find it. Technology and management tools?????? absolutely, keep perfecting them, keep making them better.  But let’s not all but abandon the search for a cure……because we are being told it’s too hard. We are parents, nothing should be too hard when it comes to our kids.  We just need to scream back at those voices telling us otherwise; even louder.  We deserve better…..and surely so so our kids. Period.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Three Years Out……and that Little Heart is STILL MAKING BIG THINGS Happen.

ReeganI know that last Tuesday, September 20th, came and went like any other Tuesday…..the sun rose, the sun set.  It was Tuesday.  Uneventful. Unremarkable.  Just Tuesday. Right?

Not Exactly.

Because three years ago an event occurred that would change the world for so good for so many, but not for the ones who lived it.  Out of their heart-ache, their pain, their suffering…..this world would change.  No one knew back then what would happen.  No one would have guessed it.  Many who have gone  through it have just battled to get their lives back.  Just battled to go on living.  One family, God spoke to, and they listened.

Three years ago, last Tuesday Little Reegan passed.  September 20th, 2013…..and only born in May 2012…..that should break your heart, it certainly breaks mine.  The so many things she should and would have done that will never happen.  Yet out of this broken world, Little Reegan’s mommy received a message.  Now you don’t have to believe this, and that is surely your right.  But the message came from God, she believes that and if you have seen what I have seen thus far, you would believe it too.

During the services that celebrated this way too short life three years ago, Little Reegan’s Mommy was hugged by someone who whispered in her ear, Reegan’s Rule will become law and change the world.

Now it was a battle.  The battle should have been lost many times.  Just the fact that a Democratic Representative introduced it to a Republican House, Senate, and expected it to be signed into law by a Republican Governor would almost seem impossible……right?  But what man finds impossible God makes possible.  And Little Reegan’s family are not weak in spirit or drive.  Neither was Representative Graham who believed in this law, and wrote this law.  How could they continue another day in this battle is completely beyond my comprehension.  But they did…..and they still do.

Reegan’s Rule is now a law.  LAW.  Let that sit in for a while and THAT law is what everyone points to in their efforts today.

>The NASN (The National Association of School Nurses) pointed to that law when they supplied School Nurses around the country the tools to let parents know that they need to keep an eye on their children’s stomach-Flu like symptoms.
>A mom from Texas pointed to that law when she utilized her ad agency to create posters that people could download and hang all over their community.
>Movements began in so many different states to get involved made possible by parents who just believed that diabetes would not do and led the way trailblazing what might work, what could work, and what will work.
>Organizations representing Family Physicians, Pediatricians, Nurses, School Nurse and Diabetes Educators pointed to the law and heard the message and are now implementing programs to get the word out.
>Organizations like DPAC pointed to that law stating they can help by making it easy for everyone to easily contact their legislative representative to hear how serious this missed-diagnosis is all about……and then did it.
>MyGlu and T1DExchange pointed to that law when they began their efforts to capture REAL scientific data on the topic of Missed Diagnosed Diabetes, that data of almost 3000 participants is currently being evaluated and a release of teh findings will be coming in short order.
>Beyond Type 1, a small organization with a reach far beyond anyone’s dream, pointed to the law as it implements awareness programs working with volunteers in so many states so the diagnosis is never missed.
>Companies such as Insulet pointed to the law as they bought people together in a ‘think tank’ to come up with real action to make a difference…..and tehy are working on doing more.
>Companies such as Context Media pointed to the law and stated, why not utilize our resources of 27,000 video units in Medical Professionals across the country to get the word out…..and tehy are doing it, as we speak.
…….and that is merely some of what has happened. SOME TRULY GREAT PEOPLE and fabulous Organizations, Companies making a difference.  There is more.  If you’re not involved as you want to be, just ask.  There is a plan now and that plan needs people, committed people to getting the word out.  Just ask, you’ll be put to work.

That law, which changed many times to get it to the point where it would not be killed in the process survived to its present state.  It needs more pull,  It needs more teeth.  It needs to be built upon. All involved know that and knew that for day one.  But make NO MISTAKE about it—-it is THAT law, and the efforts by THAT family that has caused every other ripple in this lake of tears we are trying to change.

….and still, Little Reegan’s Mommy and Daddy cry themselves to sleep sometimes and her family still wonders……..why?  Why this would happen?  But they have come to know that the world is changing because of their beloved Little Reegan. Three years out, this movement has only just begun.  Do you care enough to help make the change?…..don’t just do nothing.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Why are Others SO Far Ahead of Me?

life-sucksIt does not matter of you are starting anew job, or learning something new…….like diabetes care.  Self doubt enters the picture.  Others seem so far ahead in the process. They speak of their kids doing this or doing that and we don’t think we will EVER get our kids blood sugars below 200……much less take them to hockey practice ever again.

Take a breath.

Listen.

No one went from stop to 100 mph overnight…..all of this is a process.  Sometimes slower than others and sometimes a bit faster…….it’s not a sprint it’s a marathon.  Now I do not mean to spout a list of cliché meaningless sentences but you must come to grips with the fact that this ‘new normal’ of diabetes takes time.  Lots of time.  But know this, you are so far ahead of where you were even yesterday.  Remember the day of diagnosis…..you were never going to live.  Life would stop.  And even a week later, look how far you have come.

As I have stated a million times, the equalizer in diabetes is education.  Learning what is new, better, and best.  I do not mean in a support group or in an online community, as important as they are; learn for yourself.  If I listened to ONLY what I heard; my child would have an entirely different life style in this diabetes world.  Opinions have little value to me if they are not based on facts.

That is an important understanding.  Who cares what I think if it’s just an opinion, we might as well discuss politics.  When it comes to diabetes, there is data and facts out there for you to make an informed decision.  Experience counts and listen to those with experience, BUT this is not a one size fits all in ANY SHAPE or way.  Seek out what you need to know.

Will you make mistakes?????  You BET!   And believe me when I tell you that I have made some real doozies in my life when it comes to my kids and diabetes.  But both my children who have T1D are doing very well.  Mistakes will happen but I will also share this and hear me clearly; the more you know/learn the better your child will do.  If you coast, you will meet obstacles—-this disease needs your attention and your full attention.

If you know….I mean KNOW something to be right for your child because of the work you have done…..no one will persuade otherwise; because you know.  That only happens with educating yourself.  Ask a million questions, read everything you can and move forward.

But……

…..this does no happen in one night or one day.   Time.  Learn constantly and I assure you that you will look back every few days/weeks/months and not believe how far you have come in this journey.  And it continues just as life does.  I have to be honest with you, I learned more about life dealing with diabetes than dealing with just life itself.
I learned:
>that tomorrow is always another day
>there are people worse off than we
>there are people more fortunate than we
>a mistake can be corrected a second time around
>I am the best advocate my child will ever have, as inferior as I may feel sometimes
>I cannot teach unless I know
>I cannot know unless I really learn something
>every time I look back over a certain amount of time…..I find we have ACTUALLY moved forward.
>success is relative only comparing ourselves to ourselves

So relax…….YOU got this and it will get better tomorrow……..8,753 days into this, I can tell you that all of this is what we make it.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
.

Group Co-founded by Nick Jonas, Sam Talbot JUMP into T1D/DKA Awareness…….SPECIAL DAY TODAY.

bt1-groupHow mad are you…..I hope you are furious.  Beyond Type 1.org (founded by Nick Jonas, Sam Talbot, Sarah Lucas, and Juliet De Baubigney) are involved in the Revlon One Million Dollar Challenge.  Every dime that is raised today will go to Beyond Type 1’s efforts to bring awareness to the missed diagnosis of T1D.  Reaching out in efforts across the country.  Please help them.  If you give $40 or more, you will get one of these really cool t-shirts.

Click the picture above to take you to the donation page. PLEASE CONSIDER giving a few bucks.  This group is REALLY STEPPING up to spread the word so no child gets severely ill, or dies.  A few bucks can help, YOU can help.  Please share this.  This is for today only—help them help this initiative.  If your child was in DKA, you know how important this issue is; please help our friends at Beyond Type 1.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
.

 

Not All Heroes Have Capes!

jesse-rn“My child is recently diagnosed, can someone please send me information about a celebrity who has diabetes so I can share with my newly diagnosed child.”  We have seen this request before.  I believe we are better served to share with newly diagnosed kids, OUR kids who live everyday life with their diabetes who are  doing incredible things.  Not all inspirations need to be celebrities.  I think I will begin a series that we’ll call, “Not All Heroes Have Capes”, These people have the “NAHHC for dealing with their diabetes”.

My first person with the NAHHC for dealing with diabetes is Jesse. I have written about him before and there is surely good reason.  At the age of nine Jesse was diagnosed and what most people find so difficult, Jesse thrived.  When his parents were hovering over him like drone parents (used to be called diabetes police, used to be called helicopter parents), Jesse took it in strides and learned.

And boy did he learn.

Jessie is the first to reach out and talk to others.  If your child has diabetes, Jesse cares and I mean REALLY cares.  He has  only met my son a few times and he will still ask about him, he will still reach out to him….because that’s Jesse.  Challenges are merely an invitation to conquer, and Jesse has done it time and time again.   With poise, with grace, and with his eye on the next mountain to climb ahead of him.

Jesse has always given back and helped others and just recently, he passed his boards and is now a Registered Nurse.  I have to be quite honest with you, when I read that I teared up.  I have known Jesse for a long time, no I am not like father to him but I am someone who has watched him.  I have learned to respect him to great lengths.

Jesse is now in a field that is grueling, taxing, and extremely rewarding.  Having a daughter who is also a nurse, I know everything Jesse went through and he has achieved a most incredible feat.  He’s now a Registered Nurse, no less a hero than a celebrity on a TV show……..Jesse has proven, yet again, that our heroes are right in our own backyard.  They achieve what many would think not possible.  They really are something special and they truly have the NAHHC.  Your child can do anything with diabetes.  Heroes are not perfect, they just get up every time they are knocked down and move forward to achieve great things. 

Congratulations Jesse Nagel, RN BSN.

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

PS—-if you have a NAHHC, email me at tkarlya@drif.org….and maybe I will feature them.  Our kids need to see heroes, and the search can stop right in our back yard.

Where has the Spirit of THAT Day gone?

911-flag-and-buildingsTomorrow is the 15th anniversary of one of the most tragic days in our history.  I was there.  I was there for 36 straight hours and saw things that were beyond frightening. Many know my story and I’m not going to re-tell it today but I want to share an observation.

When people ask me what is the most memorable aspect of ‘that day’, my answer is usually the same, in as much as there was plenty of horror, it was the human spirit shown on that day forward that remains with me.

What people did to care for others during this time was tremendous.  The outpouring of love and the incredible drive to help one another was remarkable.  The manner in which we came together to give, give, and give even more in all things physical and spiritual was unprecedented.

Somewhere, we lost that spirit, I think.

I get sad when I see some of what I see.  When we become less compassionate when a child needs diabetes supplies and an entire community writes to a CEO to change the fact that the child is denied for reasons that make no sense; that is bothersome to me.

In a country where seniors are mis-treated, almost abused, for much-needed life-saving medical equipment for the only reason they turn 65; that is bothersome to me.

When I see this country, literally, act with such bitterness—REAL BITTERNESS– toward each other merely based on their political belief, that is bothersome to me.

When I see division on how we treat each other relying more on why we are different rather than what we have in common; that is bothersome to me.

When I see discussions more to prove how ‘right’ one is and how ‘wrong’ another is with such ugly tones in the discussion; that is bothersome to me.

Have we become a me right, you wrong society?  Do we need another 2996 people to be killed in an attack to remind us what we should all be about?  Do we need death and pain to soften our hearts once again?  What will it take?

I usually find a corner to be by myself on 9/11 anniversaries; to reflect of the people I met on that day and continue to pray for them and the so many families I was in contact with who lost loved ones on that day  I also try to do something good for someone on anniversary days, albeit as small as it might be. I’m glad I have a diabetes meeting to attend tomorrow.

We are an angry nation.  We are a bitter nation.  And we are facing off against each other more than ever before.  There IS SO MUCH good in our world, but the focus is constantly on the bad.  I want the America back again that I witnessed in the aftermath of fifteen years ago; it seemed like we had a more unified spirit.  I liked that spirit.

A light kept in the dark too long will come to a point where it is so extinguished that it can never be lit again.  We should look very hard within to find that spirit of light again, it served us well.

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

 

My (Child’s) Diabetes…..Why would it EVER be Your Call???

my-callWant to be involved in a really great debate…..pick a presidential candidate and tell everyone on social media why you are voting for this person…..and let the fun begin.

I promise you that no matte how much sense you my be making to yourself, you will be handed an earful from others.

Decisions in diabetes……..mmmmmmm…..not too, too different.

I’m not exactly sure why both of these topics can roll into such heated debates, but they can….and they do.  I mean it is, after all, a decision that each of us makes.  We do our homework,  We read.  We become educated.  We make a decision.  But as soon as it is shared with others, we are made to feel like we know nothing, or little, at all.

What I do know without certainty, I know extremely smart and intelligent people, brilliant in some cases, and members of this elite group much smarter than I, are leaving some to vote for Ms. Clinton and some to vote for Mr. Trump.

In the same way, I know brilliant people who have different philosophies on the diabetes management and care for themselves or their child.

So who is right?

Here is the thing, it’s YOUR call on what you want to do, and what you choose to share with anyone else.  Do not let anyone tell you otherwise.  If you have done your homework, know what you know, and are comfortable with the choice…….make it.  Where the problem starts is listening to people without doing your homework for yourself.  DO not rely on ‘hear-say’ rely on what you know to be true.

This world is extremely opinionated and the comfort of being behind a keyboard anonymously is a sense of power.  People do not REALLY know you or your child, how could they.  And yet, we become so influenced when our opinions differ.  Why?

In the fact-seeking aspects of life, it does make sense to get opinions but at the end of the day the decisions made are yours and yours alone.   We need to respect the reasons people believe what they believe, we need to do our own homework, and we need to make our own choices……why would we ever let someone else?  And why would we let anyone else influence us differently than what we know to be true?

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

Do You Have a Child with Diabetes?????……then Shut Up!!!

stupid-is-a-stupid-doesEver want to say that?  My guess is, yes.  I know people with diabetes (PWDs) have shared that with me many times as people forge forward in telling them what they ‘need to do’.  An expert who has no reason to be an expert is….well….a turkey-brain; right?

Now I know expertise can be somewhat learned.  I mean Endos do not have to have diabetes to treat the disease (although many have shared, it surely does not hurt), right?  I’m not a PWD and cannot speak from that point-of-view but I can surely speak from a parent’s point of view.

I have a friend of mine who has twins.  One boy and one girl.  Guess the number one question she is asked……ready…..are they identical?  I thought she was kidding. “Nope, they look me straight in the eye and ask me if my kids are identical.”  My jaw dropped as I asked her how she answered?  “Depends on the moment and how I feel but the one I enjoy saying most is that no they are not, one of them has a penis.”  Absolutely priceless.

We get the stupid questions too, do we not?  I do not know about you but I’m still looking to see what I did that my kids got diabetes; what was the piece of cake that sent them over the edge; what age they will grow out of it; how it might ‘deform’ them (still not getting that one at all); when will they die; or where it is in my family; like answering that question will heal all wounds.

Not to mention the stupid comments because quite truthfully, I do not care what part of body your aunt’s cousin’s brother lost with his diabetes; and/or that your dog, cat, kangaroo or sloth had it so you know exactly what we are going through.

You don’t.

Such is the nature of……well……so many….who just don’t know what to say or do.  A simple, “how are you all doing?” is fairly safe.  But for the life of me I do not get the conversations I have had over the years.  Drives me a little coo-coo.  I guess there are worse things in life…..are there not?  I mean, aren’t we just lucky it’s not cancer?
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Can One Person Make a Difference???—Here’s One that Does. Be Inspired.

Carol's stuffed animalsI hear it constantly.  I cannot make a difference.  I do not have the time.  What can one person do?  Now listen closely about what one person can do, if they choose to set their mind to it.

My cousin Carol is one of these people who has a heart the size of Texas.  She always has.  I always have envied that she balances kids, and work, then adds grandchildren, and then adds whatever else she is doing to help others whether it be at a school or church; Carol is there.  She does not ‘look’ for time, she ‘FINDS’ the time.

The picture above is made up of animals she made for a pre-school in Haiti.  “They have little”, she states, “perhaps this will brighten their day.”  Just like that, just that simple.

My brother Joe, who I have written about before, has always been one of my true heroes.  A minister and outreach director for Cru, Campus Crusade for Christ, Joe has helped so many in both their personal and spiritual needs; he allows God to work through him and the so many he touches.

When he found out about what Carol was doing, he shared a story—it is THIS story that again shows how powerful things are to others when you reach out and touch them…..even if you never, ever know.

Here’s Joe’s quick story as he shared it:
Lenisse is a Cru Alum (Meaning as a college student, she was one of Cru’s leaders at Medgar Evers College–my life’s work, indeed my life’s calling is with Cru). She is married now living in St. Louis. As a child, Lennise lived in rather poor conditions in Belize. Through Operation Christmas Child, she received a gift from someone in the states. Years later, as a college student, she spoke at Operation Christmas Child gift collection events at Medgar Evers College and Pace University telling her story as to what the gift meant to her. It is for this reason, Carol, I am confident your labor will do SO MUCH MORE than ‘brighten their day’. They will NEVER forget it. I wish there were more like you!

Never underestimate the little things you do.  Little things are big things to those who receive them.  But if we don’t do them………they’ll never know, will they?  Not all stories make us cry and bubble over, sometimes they just make us think……”what can I do to help someone else?”…….and that ain’t so bad, is it?

As Joe stated, I wish there were more people like Carol, and add to that; a few more like Joe wouldn’t be so bad either.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Hey You……It’s Your Fault.

dog under bedAnyone seen fault lately?  You know….fault.  We always look for fault.  We always find fault.  Fault.  Pretty nasty rap that fault gets….don’t you think?  How things go wrong and how bad life gets……someone’s fault……not mine….right?  If not mine, someone else’s fault surely.

Funny word……fault.

In so many areas people are so quick to try to get the fault off themselves.  But let’s stay specific about diabetes.  Whilst we want to blame the government, the pharma companies, and everyone else…….we also need to look at ourselves.  I have a weird feeling that healthcare and other items in this country are going to get worse before they get better so we had all better start to prepare.

What supplies we get, do not get, cannot afford, cannot be given the choice, cannot find, are not made anymore……it’s always and in all ways up to us to make good; for our kids, for ourselves.  If I have said it once, I have said it a thousand times—the equalizer in all things diabetes is education.  And education starts with one’s own self.

Now there may be an entire means to advocate about some of these issues but while all of that is going on, you have to stay in touch with what you need….because no one is going to do that for you.  You have to be ready for anything needed, you have to plan for it…..whatever it is and whatever it takes.  And if you don’t, you have been warned, it will be your fault.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.