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

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

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

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

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

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

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

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

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

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

Holidays, Diabetes, Your Child, Relatives — Feeling the Stress?

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So you are home enjoying the holiday preparations when your doorbell rings. You answer the door and the deliveryperson is there with a box from a relative. The size of the box surely peaks your interest and you carry your new found delivery to the kitchen table and carefully open the box. As you open it you see the contents inside: a load of goodies that sort of resembles the picture; what goes through your mind?

Options:
1. What a lovely gift, so nice of them to think of us?
2. They know we have a child with diabetes, why would they do something so hurtful?

Which one did you choose?
If you chose the first one, go about your day.
If you chose the second, pull up a chair.

If you chose the second, your feelings are real, don’t just push the aside. We, as parents, are constantly asking ourselves, “Why do others not understand what we go through?” With the upcoming holidays, people will say and do things that, very well, might enrage you with their actions or words.

Since you cannot do anything to prevent people’s words or actions, you need to create a buffer for yourself or you will be pulling your hair out before the turkey cools. First point; I have learned after 27-some-odd-years at this that no matter what the words said or the actions done, believe it or not, people’s comments are because THEY THINK they are helping.

When any of these occur, which of course, are usually said in the presence of the entire family:
>We are having gravy, sweet potatoes, mashed potatoes, and stuffing and I know little Susie has to be careful of carbs so I cooked her her a stringbean for dinner.
>Kids help yourself to the cookies and candy but remember Little Johnny can’t have any…….Johnny I have a Ritz Cracker with cheese for you.
>Oh Honey (being said to you) are you sure she should eat that with her disease?
>I have candy canes for each child and Johnny I know you cannot eat candy canes, so here is a beef-jerky to chew on.

Okay—-over the top, I know, but if you read these and smiled a little, you are on your way to realizing how you handle the clods when they say the wrong thing. Do not feel the need to correct them with a lecture at this time (and you’ve already nixed hitting them with Christmas Tree branch with the angel on it) but with a few words and a genuine smile you will accomplish your goal. “Really it’s okay, Johnny knows how much of the candy cane he can eat….please give him one too.”
“Dinner will be fine, we’ll help little Susie, thanks.”

Short and sweet. If they do not know the right thing to say or do before you arrive for the holiday festivities, I promise you they are not going to learn it on the day the family is gathering. SO YOUR JOB is just to diffuse the situation and move on. Don’t see ‘Christmas Red’ because of a stupid statement because here’s the thing; it’s not as important for them to know as it will be important that you and your child know. And even more important to know that your child is, once again, reminded that you have their back.

If they see you getting upset, they will too. If they see you getting angry (and hear me on this) they will think they are causing the strife and not your family member. It will impact them as well, THIS you do not want, ever!. Take the high road. Smile. Be straightforward, direct, But make it quick and move on. If you do this, YOU CONTROL THE SITUATION AND THE OUTCOME. And THAT is why you will feel better about the situation, and yourself.

In our house, we love the Christmas Holidays. They are a BIG deal, My daughter, since the day she could unwrap a Christmas gift, truly and honestly gets excited about opening gifts——even her stocking stuffers. Her face is priceless and genuine when she opens her gifts——she has ALWAYS been this way for all 29 years of her life. When Jill or I were feeling that ‘Christmas Red’ coming to our face, we would think of her eyes, her face, her smile—–THAT WAS IMPORTANT to us to maintain, no matter what. And no idiotic or misguided statement/action from anyone was going to ruin that.

You may not succeed right away but in time, your persona will take on a confidence that will demand that everyone check with you privately and in the correct one-on-one setting it needs to be. Jill’s very presence in the vicinity of my daughter (and then later adding my son also) demanded that anyone wanting to know anything diabetes related ………..came to her first. And they did!!!!!!

This came about because Jill has an electric smile, but when she said something about our children’s diabetes lives, one knew, quite frankly, it was law. I promise you, you will get there but don’t give into just getting angry, because you will get frustrated, and feel like you are not in control of the situation. You cannot do anything about what people say or do, but you can do something how you hear it. So when the Grinch shows up, you control the outcome—hold up a piece of mistletoe and kiss them on the cheek, and let them know who is in charge.

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

Our Back-ups had Back-ups

When Kaitlyn was first diagnosed, and the credit for this falls squarely on Jill, our back-up plans for Kaitlyn’s diabetes had back-up plans. When it was her glucometer, there was the one she carried, the one in Jill’s pocketbook, as well as the one in the car. There were always three different angles to the end game on anything diabetes. Interesting enough, over the years, the approach changed little.

I would strongly suggest that every parent consider the same strategy.

No matter what we have used, no matter how technology has changed, there was always a back-up plan…….for even the back-up plan. What that plan might be is entirely up to you and your family, but if you have a dollar to bet on anything doing with technology, bet on this one fact……it will fail.

Do not wait until it fails to be prepared.

When the technology stops, the ingenuity must, MUST, kick in. What was once a relayed signal from the cloud might become a manual glucose check and a phone call or text. What was a working glucometer, becomes using a spare one just in case. What was an insulin pump dosage, becomes an injection.

There was much online frustration relayed in our community with the recent Dexcom failure to transmit information. People were saying all sorts of things; how others should feel about technology, and what they should not feel, and what right anyone has to have such feelings, or not have. People became angry at others and felt people should mind their own business and not tell others ‘how they should feel’.

In my opinion it should come down to one thing, and as I stated, credit my wife; when it comes to anything diabetes, your back-up plan needs a back-up plan. Whatever that is or might be, I leave to you and your family. But if you do not have a back-up plan to your back-up plan; you will one day experience the panic of ‘not knowing what to do’.

And that’s not a good place to be. Plan now for the next time because I most assuredly guarantee…….there will be a next time.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

No 2 are Alike

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So as we approach our third ‘winter’ in South Carolina, I am reminded of the one thing I do not miss about living up North……..snow. I was never a fan of snow. It always looks beautiful and then the reality hits that those beautiful flakes will not remove themselves from your car and your property.

The one thing about snow that I always found fascinating was that, as the saying goes, no two are alike. Millions and millions of snowflakes and each as different as the next. This was my assessment of those with diabetes for years. I even called it the snowflake disease as how it impacts one may be completely different with someone else……and in many cases it does impact two people completely differently.

Remember that the next time you want to jump in and help someone with a diabetes inquiry. The way diabetes impacts your child could be 180 degrees different than how it impacts someone else. But withing this discussion is also a celebration of how people move beyond the limitations of this disease in their own lives. Just this week, one young man made the junior Olympic team, one starred in a football game, one danced the Nutcracker, one entered medical school, one is graduating Family Nurse Practitioner school, one went away on their first weekend without mom and dad and ALL OF THEM did it with diabetes.

So as we head into the holiday season, celebrate the uniqueness of your child. Celebrate that what they do, and remember that they do it while managing a truly tedious disease. A disease they did not ask for. A disease that was thrust upon them. Celebrate their uniqueness. And while your at it, give a pat on your own back for all you do to help them.

No two snowflakes are alike. And neither are your children. Their uniqueness is worth celebrating……in fact, it melts your heart, doesn’t it?

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

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This Month, ‘Diabetes’ Gets Nothing!

Dear Diabetes Awareness Month,

Sorry I have not paid you so much attention this year. I mean I certainly continued the advocacy I find so important. People need to be made aware of your signs so they can get proper care before it is too late.

I am also not letting you off the on letting insulin prices go just as high as they want; we’ll keep fighting that too.

But I am spending my time enjoying the things you cannot keep from my kids. I visited Minnesota this month and shared with my son his new digs at the corporate offices of Best Buy. You know, the place he could not get to because he was too young or his diabetes might get in the way. Yeah; that didn’t happen and now as he approaches his second year, we continue to be so proud how he and his fiance are doing out there, so sorry I was not dwelling on just the diabetes that week.

Oh, and also sorry that I could not spend more time with you in the middle of the month as I had to visit Kaitlyn; you remember her don’t you? You know the one diagnosed at age two, the one where one medical professional told me I should be lucky enough to hope for just getting through college. Never knew if they meant that diabetes would be so hard she would be unable to balance it with her studies or that she would be alive at this point……….well she graduated college. Graduated nursing school too. Next month she graduates as an FNP—or Family Nurse Practitioner. Take that!

Always surprised they named a month after you. It should be about those who, time-and-time-again, prove that diabetes will not stop them. It should be about those who have accomplished wonderful things despite having you in their lives.

They excel, they find great jobs, they get married, they have kids, they succeed—they do everything that you thought you would stop them from doing. So perhaps we should call November Hero Awareness Month, because quite frankly, you do not deserve to have a month named after you. But our kids do. And the kids we lost do also. They lived as heroes for as long as they could until they could not do it any longer……and you took them.

That’s what happens in a war. And this is a war. And all of us will do battle every day.
Some day, you will lose and we will win. Because you deserve nothing form us and nothing is what we are ready to give to you……..least of all to even have a month named for you. Better we stress the “Awareness” in Diabetes Awareness Month……and give you credit for nothing.

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

Diabetes Awareness Month……Key Word: AWARENESS

Well here we are again, Diabetes Awareness Month.  Trending are many people asking to post something each day of this month.  How many test strips do you use, how many units of insulin, how long have you lived with t1d????  Something different each day of the month.  I’m not so sure I would want to break down my two kids’ diabetes into a 30 day ‘advent-like’ calendar of what we have been doing for the last 27+ years, but if it works for you, why not?

But WHATever you are doing for this month, ask yourself this question as you contemplate what to do to bring awareness to the outside world; ‘who is seeing this?’  It’s great to show the diabetes community, but here’s the catch, they know already.  Whatever you are doing, and it’s up to you whatever that is, but make sure you are monitoring where your posts end up.  All year round we are certainly here to help one another but November offers a very specific charge; awareness.

SO encourage people who read your posts to send them to those who do not know anything about this disease.  Figure out some things to do, here are a few examples;  Encourage your kids to give a presentation in school about diabetes awareness; go to www.getdiabetesright.org and download one of the many awareness posters, print a bunch, hand out and hang throughout your community; donate to a diabetes charity, a camp, or any diabetes organization you like; ask to speak at one of your community meetings like Rotary Clubs, LIONs Clubs, Chamber of Commerce about diabetes awareness; wear blue like my dear friend Paula does all year round each Friday (my Fridays are just not the same if she doesn’t) but now you have 30 days–wear blue, and just do something to get that word out; just don’t do nothing.

This month is all about Diabetes Awareness…….so make people aware!  Not those who know already but those you don’t.  You might just save a life.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

November 14th I Get; Can We Make the 13th Diabetes Appreciation Day?????

BillboardGo get a piece of paper and a pen.
(I’ll wait.)
Are you back?   Good.

Now start to list everything you do in your day not having to do with diabetes, and not having to do with you, but what you did for someone else.   In other words, “I took a shower” does not count.

Now add to that list everything you do while dealing with diabetes.
(I’ll wait, write fast)

If you did this list you would realize how long it is.  What we do, as parents, is pretty detailed.  Add to the mix our diabetes world, it is truly amazing that it all gets done, don’t you think?  As we go through diabetes awareness month, realize the most important thing………you?

Take a $50 bill and paint it blue, or draw a blue circle on it, and take it and get your nails done or your hair done or go to the movies.  Take ‘something diabetes’ by making it blue and spend it…….on you.

The purpose? So we each realize that he most important thing to know in our diabetes world that with out……well……’us’……nothing would have ‘gotten’ done.  This month is about awareness, right?  Who better to be aware than ourselves.  You know, the forgotten one.  The ones who just truck along and get done what we have to because we love the person who battles this disease every day.

Perhaps on just one day, say the 13th the day before the ACTUAL diabetes Awareness Day of November 14th (which is also the birthday of Dr. Banting of Banting and Best who discovered Insulin) and make that Diabetes Appreciation Day where every person with diabetes sends a note to the parents or loved one who watches your back.

“Hey just a note to say how much I appreciate my guardian angel(s).  Thank you, I love you.”  Send it on November 13th…….Not such a bad idea……right?  Of course it will be on the 13th—-thirteen just makes sense too if you think about it.

Of course none of us do it for any thanks, we do it because we must.  We do it with love.  We’ll do it until the day a cure comes along.  We have to, it’s what we do.  So even if we do not receive any thanks on November 13th, let’s do something JUST FOR US like get a haircut with a blue bill, at least we will look good checking blood sugars at 3:00 am……we deserve that at least, I’m sure.

I am a diabetes dad.

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

 

The Best ‘Diabetes Blue’ has ALWAYS and in ALL WAYS Been With Us.

blue skiesLong before there were blue circles, blue nail polish, blue buildings, and/or blue…..well anything…….there was a blue that reminded me daily what this ‘diabetes thing’ is all about.  From the time Kaitlyn was diagnosed on September 26th, 1992 I have found peace in the blue skies above.

A dear friend once asked me how I can travel so much and do it so easily.  I have to do what I do, it’s so personal.  The people I fly to meet, do not.  They can give of their time and their money to a million other causes, they choose to support the efforts of the DRI (in my case; your case is just as valuable although it may be for a different organization—all just as vital.).  I totally respect every effort, one dollar or millions; they do because they want to see this disease end…….I LOVE that energy.  I need that energy.

Since that day over 22 years ago I have loved looking toward the heavens and seeing blue skies, it both represents and reminds me of the endless possibilities for Kaitlyn, now also Rob, and the millions others out there just like them who only want a life that allows them to be themselves.

Those same blue skies have shown me that tomorrow will always be better and that something great is happening in our diabetes world every day.  Is it easy?  No, it’s not but it’s surely worth it to try so hard to make their world better; to make better the world of others.  Who gets to do that every day?  Almost every waking hour.

There are other diseases that need help.  Many other causes.  A million other causes.  My dear friend and one of the founders of the Diabetes Research Institute is Barbara Singer, a woman who I love dearly.  Barbara taught me a lesson very early on in this battle, “Hit your own ball.”  Simple approach, yet it has served me so well.  I have too much to do with those who want to help, I have no time to spend idle energy on anything other than to work with those who want to make a difference.

It’s a big world out there, if you don’t agree with someone or some entity; wish them well because their heart is in what they do also just as yours is; and go about doing what you must for your energy to be well spent.  ‘Hit your own ball’ indeed.

So today, let your ‘diabetes blue’ be the blue sky around you.  Let it represent the endless possibilities out there for you and your family.  And when those clouds appear, as they do in life, know that a time will come when that sky will clear up and be blue again.  And those clear blue skies are the best representation of diabetes blue I could ever have in my life………crystal clear blue.

I am a diabetes dad.

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

 

Diabetes Jeopardy Answer #16 for D-Month: From the White House to Across the Table; His Pulpit is Life, his Message is Diabetes.

James Gavin Michelle ObamaJames Gavin……And the answer is–Who is James R. Gavin III.

Dr. Gavin is more than just an endocrinologist and a specialist in diabetes and metabolism; he is a worldwide advocate on changing the landscape of diabetes and he is going at it full steam.  when he speaks it is as almost as if you are at a revival meeting, not a lecture.  His passion and discussions on changing the landscape of diabetes is not only inspirational, it will leave you in jaw-dropping awe.

He is a former president of the American Diabetes Association, recipient of the Banting Medal for Distinguished Service, and in 1991 received the Association’s Clinician of the Year award for his contributions to diabetes care.

Dr. Gavin (with a PhD and MD) played a critical role as medical expert in Kapche v. Holder, a case that involved a challenge to a federal agency of the United States for people with insulin-treated diabetes, which, as a professional expert refused to take payment for his testimony because he so believed in the cause.  He is not afraid to take on diabetes and his education informing the world that diabetes (all diabetes) does not care about color, race, or religion is a breath of fresh air. 

The walls he has knocked down are incredible and he is a firm believer of educating ANYone who will listen; from me when I was at dLife to The First Lady of the United States (where he is Chairman of her partnership for a Healthier American Partnership).

This is taken from his Bio at the American Diabetes Association:
James R. Gavin III, MD, PhD is a noted leader in the field of diabetes, serving as CEO and Chief Medical Officer of Healing Our Village, Inc, Clinical Professor of Medicine at Emory University School of Medicine, and Clinical Professor of Medicine at Indiana University School of Medicine. Dr. Gavin is a former president of the American Diabetes Association, recipient of the Banting Medal for Distinguished Service, and in 1991 received the Association’s Clinician of the Year award for his contributions to diabetes care. In 2010, Dr. Gavin, along with the rest of the Kapche Litigation Team, received the Association’s Public Policy Leadership Award for his work in defending the right of people with diabetes to live free of discrimination.

For Diabetes Awareness Month:
This month, I will be highlighting someone in the diabetes community.  They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place.   I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are.  If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well.  Welcome to diabetes awareness month.

I am a diabetes dad.

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

Diabetes Awareness Month—How About Something Different this Year….Yes?.

November is Diabetes Awareness month thus deemed so by the American Diabetes Association a long time ago and followed by the world.  November 14th is Diabetes Awareness Day–in honor of Frederick Banting who is the youngest Nobel laureate in the area of Physiology/Medicine for his discovery of insulin (he did not do it alone but that is a different story for a different time).

Over the years I have watched as; the blue circle struggles to gain traction as an international symbol of diabetes; various media attempts to capitalize on this time with advertising supplements about diabetes (am I the only one who thinks that EVERY newspaper who has a diabetes supplement during this month should donate SOMETHING to a diabetes cause?); event upon event attempting to educate about diabetes; and so much more?  My question is; “How’s that all going?”

There are still miscommunications and misrepresentations across the board when it comes to diabetes and it seems no matter how hard we all try; each November comes and goes…..and here we are again.  This should not be during one month a year, it should be all year round.  The diabetes advocates try very hard to do this and I am happy they allow me to be part.

I am going to do something different this November, diabetes awareness month.  I’m not going to try to change the world, I’ll leave that to better minds than me.  I’m doing something very simple.  Very, Very simple.

Each day of diabetes awareness month I’m going to send a note or an email to someone who has helped along this pathway; this journey.  Not a blanket thank you across the board…just one person each and every day will get a note or an email that just says, “Hey, thanks.  You made a difference in our lives battling diabetes.”

Want to join me?  It’s not going to be a huge blue circle of umbrellas in central park with press releases, hype, and do this or do that………just a thank you.  I might even use blue paper.

I’m a Diabetesdad.