A Young Lady, Despite All Odds, Hit Her Goal. What’s Your Excuse?

OLYMPUS DIGITAL CAMERAOur kids are truly amazing, are they not?  I am struck this morning about a story, or more of a happening, that a good friend of mine has gone through this week.  It is not enough that this woman’s job has her putting her own life on the line for us each and every day, she had to deal with an incredible story dealing with the survival of her daughter that had much to do with diabetes.

If she chooses to relay the entire story, I will let her do that; but what is important today is that you know in the middle of this incredible hardship; her daughter had a goal.  A goal, perhaps, that she had dreamed about for some time. A goal that also, perhaps, no one would ever expect her to hit with everything she was going through.  And in the midst of it all, she found the strength and the will to accomplish that goal….and it will probably be a highlight in her young life.

Goals are important and more important is that drive to accomplish your goal in the face of adversity and whatever may be thrown in your way.  Do you have a goal?  Is it a big goal?  Is it a daily goal?  Is it a long-term goal?

The interesting thing about goals is that the bigger the goal, the harder the goal, the bigger the payoff when the goal is reached.  Now the determining factor is you; and no one else.  I have a friend of mine who has a severe addiction problem.  Each and every day that she lives without giving into that addiction is a big deal.  Are we to argue that point?  Absolutely not.  In fact for the longest time, I congratulated her each and every day.  A mountain conquered.  The size of the goal is determined by you alone.

Here is another thing about goals; when you hit them, you feel great.  And I have to tell you that our kids are fabulous at setting goals.  It truly does NOT MATTER what they are….just that they are set and attempted.  Each and every one of my kids has set goals for themselves and, as a parent, I marveled how they got to the point that they did.  In fact, in their short lives they have set many goals.  They hit many and the ones that do not work out, are discarded and the next goal is set.

So be like my friend’s daughter who when every odd was against her, laying in a bed, she decided that the norm would just not do; and set out to accomplish her goal, and did just that!!!!   So today, set a goal.  Doesn’t matter what ANYone else thinks of it, just what you think of it.  And go for it.   There is a reason people yell so loudly at a soccer game when the difficult score occurs.

GOAL!!!!!!

I am a diabetes dad.

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

EVERY Day…We are Given the chance to Knock It Out of the Park

HomerunI was amazed how many people responded to yesterday’s article about ‘diabetes meltdown’.  As I read so many responses, I noticed an underlying thread in so many that I wanted to share my thoughts today.  The constant denominator that I noticed was the question on how far is one permitted to go in caring for a child with T1 diabetes?

Surely one of the most brilliant answers on this topic came from none other, than the wonderfully brilliant Dr. Richard Rubin.  (Oh how the world misses this incredible man well over a year since his death.)  He said to me once, “It is about balance.  You have to keep looking for that balance and constantly make it about choices.”

Me, in my always thirst to know more asked what I thought was a brilliant question; “We have been at this a long time, at what point do you find that balance?”  To which Richard responded, “Never”.

He went on to explain that in some battles we will learn what to do but the disease is ever-changing as our kids are ever-changing; so the ‘balance’ is sought forever.  But here is the catch.  Number one: remind yourself in ALL things diabetes with your child (and hear me loudly) is not their fault.

We constantly yell and scream when people ‘get diabetes wrong’ saying things like “Did you give them too much soda when they were younger”; but when our kids are just too tired (tired defined as just exhausted from having it, having a bad day, a bad week, just not wanting it anymore) we get frustrated with them and it turns into a battle between child and parent.

We tell ourselves that this is okay to do.  It’s our job.  I’m not here today to argue that line in the sand and where it is or should be (only you know that); I’m saying that it is at these times more than any other that we MUST remind ourselves; it is not their fault they have it.  This is not on the same shelf with the million times we tell them to pick up after themselves, clean their room, do their homework, or anything else in their lives.  There is a difference and it should be recognized.

The words ‘being wrong’ are different dealing with something they should never have had to deal with in the first place.

I was the worst at telling Kaitlyn to ‘just’ take care of (or just do) it; way back when.  For years I did this but at a CWD Friends for Life Conference (which if you have never gone to, you should beg, borrow or steal to get there—there are scholarships for families also) I learned that me getting mad at my daughter for not doing something to take care of something that she had nothing to do with getting in the first place (wow say that again—whew!) was sending a message from me that, once I understood it, made me feel horrible.

It became about choices.  Asking questions to show them that their action will result in a result.  For the most part it was with a positive spin.  “DO you remember how bad you felt yesterday when your blood sugar went very low, do we want to see if we can try and to ensure it does not happen today?”  Sound difficult?  It isn’t, actually, and once you get the hang of it, it will filter into, and help with so much more of your parenting.  Now I’m not stating that the “I said so” answer will never be used again, but I am saying that the use of choices was a huge help to us.

The second point is that we know there is no universal manual dealing with children and parenting.   Add diabetes to that mix makes it more frustrating that we cannot always do X and get Y as a result.  It changes daily, even hourly, and it is up to us to figure out what to do.  There are books you can read that may offer some guidance but the truth is that when it comes down to your child (or children) and you; there is really no universal action/reaction to anything.

In as much as you cannot and should not be too hard on your child, give yourself a break too.  People who have heard me lecture have heard me say that no one has made more mistakes at this ‘diabetes thing’ than me. That is the truth.  I am the king at this and here is the point: one thing I know is that the sun will set and rise again.  Time will always move on.  We must learn to move on also.  No matter what has been dealt,
I believe if we cannot accept what (whatever it is) has been dealt to us, we must learn to cope.

I wear my ‘diabetes police’ badge proudly.  We must do what we need to do to help our kids.  Keep reading, asking, and learning.  No one can become an expert at anything unless they do it.  No one got to the major leagues in sports without doing it every single minute of every single day.  YOU are now in the major leagues when it comes to diabetes management; and my guess is that many of you should be listed as MVP.

I am a diabetes dad.

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

Has Your Child Ever Had ‘Diabetes Meltdown’??????

melt_downIt happens.  In all sorts of varying degrees, but at some time or another our children will decide that they do not want diabetes anymore.  More than just ‘not want it’, they will decide that they do not want to do anything to take care of it.

In some it is for a day or so.  Some it so much more.

It can happen at anytime, really, but it seems to me that many times it happens during the teen years.  There is a time when they just turn off.  They do not take their shots, check their blood sugar, eat right, and they can get pretty nasty toward life and everyone around them.

It is our job to keep a check on how much this thought process is impacting their life and there are many courses of action that can be taken and should be taken.  My friend Joe tells us (who has T1 for over 50 years) that everyone needs a break,  Every now and again it is okay to just do the minimum so the brain can take a little rest.  Let them kick back a bit.

Some who have experienced an all out melt down will have their endo inform the child that they should speak to someone.  Someone who specializes in diabetes and the psyche of living with it.  At some point it may be worth while for your child to have someone to speak to that is not you.  And it might be just a tad easier if it comes ‘officially’ from your endo.  Let your endo know what is happening and seek their advice on next steps and who, possibly, your child may speak.

There are many facets to diabetes and living with it.  It’s never easy.  It is at certain points that it must really be about giving them choices and others when a course of action must be considered.

I tell you this from someone who knows nothing about living with diabetes because I do not have it.  THAT is the most important lesson I have learned in all my years.  Trying to explain to a child something we do not understand, and THEY KNOW we do not understand is a huge part of the battle.   Find someone who can talk to them.  Someone who can set them correctly because they have been there.

There is help out there and the most important thing we can do as parents is keep seeking it until the problem is resolved.  Please share what you have done when your child just decides ‘not today’ or ‘no more’.  It can be extremely frustrating and we feel so helpless.

Share any tidbits you may have also.  Others could use the help.

I am a diabetes dad.

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

Parents Were Right About T1 Being Diagnosed More…….New Study Shows a Trend Which is Alarming.

Going upOnce again, the parents were ahead of the curve.  For the past few years there has been a trend in the numbers of young people being diagnosed with type 1 diabetes.  There was no official word, it was coming from the mouths of parents.

“Yet another one was diagnosed, it just seems that it is happening more and more.”
“The third child in my child’s fourth grade class was diagnosed; that is in the last two months.”
“Something is going on, there are now seven kids just in out grammar school.”
Parents have been saying it, and saying it, and so many were ‘tapping the top of our heads’ in that ‘sure-sure-now-go-back-out-and-play’ condescending manner as if only those in the scientific field could notice such a phenomena.

Well now it’s a proven fact……but no one is celebrating about being right.

JAMA (Journal of the American Medical Association) just published a report out of the Colorado School of Public Health that studied data from 3 million children in five states over the period from 2001-2009 from age 0-19 regarding those with type 1 diabetes.

The results are alarming.  But we knew that already also, didn’t we?

In 2001, 14.8 children per 10,000 were diagnosed with T1 (4958 children); in 2009 that number leaped to 19.3 kids every 10,000 with T1 (6666)–an increase of 21%; remember that this sampling was in five states; Colorado, California, Ohio, South Carolina, and Washington State.

The study had information about type 2 diabetes as well but in as much as many were quick to point out some explanations as to the rise surrounding T2 children ages 10-19;  it was only stated that more research needs to be done as to the reasoning in the drastic rise of T1 diabetes.

The numbers are there and a rise of 21%, in anything, is surely enough for many to take notice.

What does it mean?

Well for you and I, we will go back and do what we do to keep our kids with T1 as healthy as we can.  For the rest of the world, if you think that the data is true and would be consistent everywhere else (and there is no reason for me to believe otherwise; data is data) well it means that 21% more parents than usual will, unfortunately, be included into our world.

I hate that there is no course of action.  Nothing that can be done.  In a number that is 21% higher than it normally was, parents in the United States will be waiting for a shoe to drop; some a second and/or third shoe to drop.

I will take this information and share it with those who have already been contacted regarding a Child’s Cry for Change and Get Diabetes Right.  With 21% more people being diagnosed, that is 21% more cases that face a chance of being mis-diagnosed or not diagnosed at all when needed.

Tell me again why resources for a cure are becoming less and less; I know now that I have a 21% increase in my desire to find it.  May the world agree.  More than that, may they do something about it.  Don’t do nothing.

I am a diabetes dad.

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

 

An Incredible Gift……….Cherished Every Single Day.

Gift BoxOne of my favorite plays is Our Town by Thornton Wilder.
“We all know that something is eternal. And it ain’t houses and it ain’t names, and it ain’t earth, and it ain’t even the stars . . . everybody knows in their bones that something is eternal, and that something has to do with human beings. All the greatest people ever lived have been telling us that for five thousand years and yet you’d be surprised how people are always losing hold of it. There’s something way down deep that’s eternal about every human being.

These words are stated by the Stage Manager character in the show.  The lead female in the show is Emily.  The powers that be, in the afterlife, allow Emily to go back to one day that was very special to her. Emily chooses the time of her twelfth birthday.  She realizes how much time has passed and how much she did not notice.  It is a very revealing and wonderful story.

Today, I am 57.  Cinco de Mayo, is my birthday.

When I was growing up, I remember vividly one birthday party in my life.  It was a gorgeous May 5th day and our picnic table was set up in the driveway.  The breeze smelled sweetly of the blossoms off the many fruit trees we had in out back yard.  There was a very colorful paper table-cloth with paper-plates, hats, and streamers all set up by a beautiful birthday cake.

Kids from the neighborhood were all present and Albert Giovanelli told me that his present was the best one because it was a “Slinky” (google it).  I do not know if he was right or not, but out of all the gifts I received that day, his is the only one I remember 49 years later.  So maybe Albert was correct.

I remember my mother wearing a dress; and all of the girls in dresses.   Today it is very difficult to think of my mom being 20 years younger than I am now when she planned this party.  It was such a peaceful and wonderful day.

I actually remember telling myself that it was very important for me ‘to remember this day’;  and for so long I have.  Where I put my keys yesterday, not so sure—but that birthday I will surely remember forever.

I have always found that it is best to remember the good.  To hold on to the good.  People have told me that I seem, by nature, to be a positive person. And I honestly believe that the reason for this is that ‘eternal-ness’ each human being has, which Thornton Wilder teaches us, is worth the time to get to know.

There are wonderful people in our lives.  Truly wonderful people.  And I am truly one of the most fortunate men on earth to know so many spectacular human beings who are as different as they are active, as strong as the are sensitive, as diverse as they are helpful, as strong-willed as they are conscious of others, as vocal as they are sensitive, and as helpful in my life as any man could ever hoped.

I am grateful for so many who are close, are colleagues, are partners in our battles, and for some incredibly silly reason have allowed me into their lives.  I thank each of you for that, and for sharing yourself.   It makes for a wonderful world.

Thanks for being my gift.

Happy Birthday………………………………….indeed!

I am a diabetes dad.

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

 

A Tribute to a GIANT Who Changed Diabetes Insurance Coverage Forever…….Who Has Decided to Step Down.

SweeneyThere is a scene at the end of the smash hit movie, The Devil Wears Prada, when the leading lady’s protégé/assistant has decided to move on.  She sees her in the street after she has left her employment and although she is furious at her leaving, this small smile runs across her face because she knows she is doing exactly what she wants to do……and that is worthy of the leading lady’s respect.

That sort of happened to me last night when I read that NY State Assemblyman Bob Sweeney has decided not to run for re-election.  My inner self, a tad selfish I guess, said “oh no”.   But as a I thought about it, a small smile ran across my face because I knew that if Assemblyman Sweeney says he is done and wants to move on; it is surely deservedly so, and I am glad he will be doing what HE WANTS TO at this point in his life.  He most assuredly has won the respect of everyone in New York.

If you live in NY State, and have diabetes or know someone with diabetes, you must be made aware that there are laws on the books that those of us who know about them in the diabetes community; we call them, in short, the Sweeney Laws.

Assemblymen Sweeney is responsible for some of the toughest laws in the land requiring ‘must carry’ items for insurance companies regarding diabetes supplies, meds, and management tools (including CGMs).  The meaning of the law is that there are certain diabetes supplies that insurance companies MUST cover and the impact was immediate.

And if you have diabetes (or a loved one with diabetes) and live outside of New York State, you need to be aware that other states have emulated these same laws to cover pertinent diabetes supplies.  Assembly Sweeny worked tirelessly at the passing of this bill and also had the genius-of-mind to empower the NY State Commissioner of Health to add anything else in the future that was deemed necessary so another ‘trip to the Capitol’ would not be needed for legislation.  If the Commissioner deems it necessary; done.  That quick; as we saw when the CGMs were added to the list in NY State.

THAT was huge!

Before anyone, it was Assemblyman Sweeney who decided that this was a good bill.  This was a needed bill.  This was a bill that needed to be law.

And it is.

He would be the first to tell you how many others helped; but it is he who was the brains and the strength to make this bill….law.  He has also made sure that there was money in  the budget for many years to help support a day camp for kids with diabetes on Long Island.  And that was only a small sampling of this gentle giant’s work.

The most interesting thing about Assemblyman Sweeny’s year’s in office is that there are many other groups that owe him a huge debt of gratitude as well.  He was a gentleman but his mild manner was never mistaken for a weakness.  When it came to issues that mattered most, he was a lion in getting the job done.  And he did, for many. In fact he sponsored approximately 350 bills that became law    He reached across the ‘aisles-of-political-ness’ and across this state on doing what was right……………………for we, the people.

So at the 26 year mark, Assemblyman Sweeney states it is time to do some other things in his life, and no one could ever blame him for that.  He has served the people of New York well; and for some people with diabetes, I know that he also has saved a few lives along the way.

Thank you Assemblyman Sweeney………….for caring so much to change our world for the better.  Best of luck in the future, if anyone needs to be given the ability to enjoy family and life……it would be you.

I am a diabetes dad.

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

NEED YOUR HELP TODAY………Summer Camps???…..Help Others…..What Do You Know?

CampOkay, I need your help.  Because I do not know from personal experience; I seek your input today.  It is May 2nd and families are getting ready to send their child(ren) to camp.  Our kids did not attend summer camp, or by time Kaitlyn did–she did as a counselor–but it surely is a topic THAT MUST be addressed.

Kindly share your experience going to diabetes camp for the first time, or every summer; having diabetes and going to a non-diabetes camp—what tidbits can you add?  Not going away to camp but a day camp—what do you know?

One of my favorite people on this living earth is Shelly Yeager.  Few people have the love deep within her heart for our young people than Shelly.  Her work at The Barton Camp, the Diabetes Education and Camping Association, and more recently with Young Leaders in IDF also has made her a powerhouse of knowledge.  Camps can be such a huge asset to any family dealing with diabetes and Shelly taught me that over the years.  The amount of education that is poured into these camps is just incredible. And…..they’re a load of fun.

You can learn a good deal by going to the site of the Diabetes Education and Camping Association (they have a camp locator by state) but I also believe that some great advice from others adding their own personal experiences will be a huge help as well.

What did your kids like about it, what did you do to get them ready, were you in contact with your kids while they were away–and how did you deal with that aspect, how can one get financial assistance in attending, did you weigh sleep-over vs. day camp?????   Our friends overseas….share what you know also; where should people turn for help in your country?   All just some questions that need answers and could help others.

And PLEASE feel free to tell us about a camp you love (and add their link); this is all information that people might be able to use.

Please hit reply and give your comments on this site because this article is sent and read all over and not just on the FB page you may have seen it; so please add your advice, comments, and pearls of wisdom right here for others to see.

Camps—-the season is open!

I am a diabetes dad.

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

We Will All Need Help at Some Time…..A Story that Will Warm Your Heart.

Girls softballIt will happen.  No matter how good we think we are, no matter how hard we work at it, there will come a time that you will need help along the way.  Bet on it.  If not yet, it will happen.  Because everything we deal with is life, and life is every thing we deal with on a daily basis.

I have included a video today (I like to do that) and it is only about two minutes long.  It is one of the ultimate situations when someone accepts help from a an incredibly unexpected source.  It is a reflection of how the human spirit should be in dealing with one another.

Let it serve as a reminder of two things.  One, that people can surprise you at any given time and two, when someone offers you help………take it.  Because sometimes a helping hand is there, but we just don’t notice it.

I saw this video a few years ago.  interesting that participants are long graduated into life, but on this day, on this date in time; they created something that they will never forget; a lesson for all of us.

Click the picture above to see a short video of one incredible group of young ladies.

I am a diabetes dad.

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

Calls We Make on the Phone, about Someone Special.

TJ FiremanThe phone.

You know, the call.

You know, the amount of times that you pick it up and it feels like a million pounds.  The weight of calling a loved one to deliver the bad news   You remember it; “Mom, Dad, we are at the hospital, she has type one diabetes.”  Or the call with even worse news.  Remember those?

Well today I am reminding you to remember the opposite occasions.  The times you were so excited that you could not dial the phone.  You were smiling so hard that your face hurt.  You were giddy, a song in your heart; the earth could not be more beautiful.  Cell phone or old-time-rotary phone, it did not matter—–you oozed joy.

Today is such a reminder of such a day.  Our first-born arrived 27 years ago this date.  Thomas James entered the world and our lives would be enriched and changed forever.   A father could not be prouder of his kids, and each of ours has incredible strengths.

I have often stated that my kids are far from perfect, just like their dad.  But they provide us with such incredible joy.  We always look to teach our children, to be the mentor; many times—-they teach us.

My son is fiercely dedicated.  If you are not his friend, you’ll know that but if you are, he will be there for you at every turn.  He has taught me the meaning of absolute friendship.  He has a group of guys and girls that have a bond of which I have never experienced before.  Most are in the fire department with him, perhaps that has something to do with it.

They are as silly as they are serious and they enjoy each other beyond measure.  I truly love TJ’s friends.  “Hey Mr. K”, is the sound I love to hear from them each time I see them.

He has a very protective side to him as well.  He has, on more than one occasion,  stood up for others and his family in ways that one would need to experience to fully understand; rather than me try to explain.

I, me, personally never owned a pet until I was a father; and watching TJ’s love for animals has taught me a great deal.  Why, me the man who would never own a dog, now has two.

I have written many times about the way TJ and his colleagues approach firefighting.  He was part of a group that I will always call “Tony’s boys”—a mentor who once said to me, “Tom, my boys go in and come out of fires.  I will always have their backs.”  And the entire time he taught them, outside of a few scratches, he was true to his word.

Tony’s boys turned into fine young men who are a tightly knit group that will be there for each other in all things good and evil.  They are men; faults and all: but there for each other.  There is also a strong bond with all of his friends which of course include women as well, but it is this group of guys he has known all of his life that I have watched grow right along side of him.  They all play a role within society, and this does not surprise me.  Military, EMS, Police, Fire Department, Linemen, Post office and more—–they connect and watch over all of us.

I write a lot about diabetes.  It has changed our lives and impacted us beyond anything anyone could have ever imagined.  When my younger two children were diagnosed; along with Jill, someone else was there thorough all of it also.  A lot of attention is given to our children with diabetes; we tried to do what we could to balance those scales with TJ, who does not.  It’s tough to be ‘the child without diabetes’ in the attention category within a family unit.

He is 27 today.  He bears my first and last name.  I am so proud of him and everything he does.  Happy Birthday son.  I love you bunches.

“Hi mom, dad……it’s a boy.  We had a boy.  Thomas James and we will probably call him TJ.  Yes, mom and baby are doing great.  Yes, he weighed………………………….”

Ahhhhh………the phone.

I am a diabetes dad.

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

What is your FAVORITE Diabetes Word or Phrase?

diabadassWhat is your favorite diabetes phrase or word?  You know the one you saw and made you say, now that says it all.  One of my favorites…….and it may be taken as a tad crude by some, I guess and I apologize in advance, but I just love the word “diabadass”.

It is an edgy word that tells you the person is taking no defeat, grabbing diabetes and dealing with it and is taking no prisoners when it comes to diabetes.   I just love it.   And PLEASE if there is ONE PERSON who deserves the credit for this word—please stand up and take a bow.  🙂

One word. One phrase.  Over the years, what has been your favorite and if need be; please explain why.

But share it with us.

I am a diabetes dad.

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