Don’t Wait……BE THE SOMEONE ELSE!

Be someone elseWe are faced with many choices in this world.  We are faced with many moments in this world.  At any given moment there is a choice presented and the decision comes down to what road do we take?  What time do we give?  What is our choice to ‘just don’t do nothing”?

I find it amazing to work beside people (both professionally and as a volunteer) where ‘the norm’ is just not acceptable.  We can choose to do something about an issue and just ‘pounce’ when someone gets it wrong; and scream and rant and rave what a ridiculous comment or action someone takes……..or we can choose to do something about it.

It’s easy to yell and scream about a football player who punches his fiancé in an elevator; it is another action to take calls at a 24 hour crisis center.  It is easy to yell at someone for ‘getting diabetes wrong’, it is another action to get up and walk, ride, or advocate.  It is easy to point a finger and yell and scream, “can you believe that?”  It is another action to start a group to connect college students with diabetes.

My point?

Lifting voices is a good thing.  Our voices NEED TO BE HEARD.  But voices without action will die down once the screaming stops……and it will stop.  Ask yourself, “What am I doing?  Am I doing enough?”  I cannot judge you, nor will I, each must ask themselves that question.  Only you can answer.

I do know this…….there is much to do.  Being on the sideline pales in comparison to being on the playing field.  Are you on the sidelines? The ‘let someone else do it’ I am too busy (or whatever reason you think is justified) needs to stop.  Everyone deals ‘with life’.  Everyone can find some time, no matter how small, to help.

Get involved……some how……some where.  Don’t wait for someone else…….BE THE SOMEONE ELSE!  Period!

I am a diabetes dad.

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

 

The Story of the Red Bandana….One of the Most Incredible of ALL 911 Stories.

red bandanaI have seen hundreds of stories of September 11th, 2001.  I was a story of that day as well.  Last night, while at Citifield to watch ‘my’ NY Mets (leave me alone I’ve heard all the comments that exist), there were ceremonies in remembrance on the anniversary of 9-1-1.

A man walked to the mound to throw out the first pitch.  The announcer said but a few words; and the man dressed in red, with a red bandana tied to a baseball mitt, threw the first pitch.  He is a dad.  His story may be the most incredible one I have ever heard outside of the first responders and that of Flight 93.

I went home and found out more of the story.  It truly is one of the most incredible stories I have witnessed.  It’s a little long (thirteen minutes)……but I promise you…..it will be worth every second.

Click this link to view the story of……the man with the red bandana.

I am a diabetes dad.

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

 

A ‘Child’s Cry for Change’—an Update–and Stories Now Needed From You!!

Childs cry for change final coverIt has been a whirlwind since we first discussed the “Child’s Cry for Change”.  Efforts to help educate…..well……the world on looking for the warning signs regarding diabetes; and the diagnosis therein.  The goal is for the warning signs to be seen much sooner and that no child is diagnosed with T1 at death.

This is unacceptable.

The first result of the program resulted in a  concentrated effort entitled “Get Diabetes Right” which is a FB page Kim May (a d-mom) and I created.  Kim’s ad agency has done a monumental job on this effort.  At the site, you can download posters or request a PDF of the files to be sent to you; which will be done free of charge, you can forward them on to Doc’s offices, school nurses, and anywhere else where people can see them.  It is our hope to soon have a webpage in addition to the FB page, and also get ‘that map’ of electronic push pins to show where the posters have been distributed…..keep your eyes open.

I have also been in discussions with certain groups to create the huge traction on this that we have sought since the beginning.  That is becoming closer to reality and, hopefully, I will be able to share more on that in the not too distant future.  One has to first make contact, continue the process, allow groups to meet with their boards, and discuss internally. This is, but, an idea and I’m deeply committed to do all we can in every once of my ‘free time’ so no child ever dies at diagnosis again.

Each group I have met with, also has their agendas and to be included with this type of initiative, takes time. I have lost count on how many calls and meetings I have had but I know the traction is gripping the road and there WILL BE some exciting news when the discussions become more concrete ‘action steps’.

Presently, here is where I could use your help.  When we started this together, I needed stories of mis-diagnosed families of T1 diabetes, even if it meant diagnosis at death.  I created a document (or a book) of almost 40 pages.  the stories were heart wrenching and to all who sent them in, I will share with you that you have impacted many in leadership positions.  Your voices are being heard.  The discussions in meetings I’ve had have resulted in reactions of genuine concern; and the willingness to consider how we can approach changing this landscape. YOU DID THAT!  I now need to prove, by your stories and voices once again, that interventions HAVE HELPED.

Any child that had flu-like symptoms and a school nurse informed you that ‘it might be diabetes’ and you should have your child checked further; and it turned out that your child indeed did have T1 diabetes and the school nurse’s hunch/assessment was correct…..I need to collect those stories.

Please share in a few paragraphs what transpired and send it to me at karlya@optonline.net and in the subject line please write “School Nurse”.  I need as many of these stories as I can find; include the state (and town, city etc), grade your child was in; do not use last names or the names of the school.  For your school nurse just use their first letter of their name; “Mrs. A”, “Ms. A”, and/or “Mr. A”.  Please share this article on any site where parents of kids with T1 post.

I need these as soon as you can send them.  It is crucial to know when a diagnosis was also done correctly.  For now, I just need any school nurse stories you have.  Thank you for adding so much.  There will come a time I will share this entire journey; but the present focus remains to create an education and awareness program of large-scale distribution.  We will get there so that the Child’s Cry for Change……is heard….and heard loudly.  Send me your stories as soon as convenient.

Thank you.

I am a diabetes dad.

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

Who Are We…..????

BooksDid you ever see that commercial with the tagline, “What’s in your wallet?”  The idea is that if their credit card is in your wallet, you would be better off…..interesting concept.  I think that if you ever want to know a little about someone, look at their library, or at least at the pile of books near their bed, it will reveal a little bit of what interests them, and maybe even who they are.

My books are three-fold. Diabetes books.  I probably have anything that was written in the last 3 years or so; and I have some that go back 20 years or more.  If someone writes about a diabetes……well…..anything…..I want to read it.  I also have folders and folders of magazine and research articles.  I really cannot get enough of anything about diabetes.

Theatre Books.  Plays, about plays, Shakespeare, acting books, scripts, a book-case full of them.  It was my life for so long and I love when people ask me, “Do you still act at all?”  Fourteen years since I last walked upon a stage and people still ask me.  Cure first (as I promised to my daughter), acting later.  But I read them when I ever I can find the time.

Books about people.  I love to read stories about real people.  Autobiographies, biographies, retrospect—I find people fascinating.  How did they become who they are; leading the pack is Disney Wars, a must read for any fan of anything Disney—a real eye opener.  Relationships between presidents and advisers (JFK, Roosevelt, Reagan, Carter, Nixon) celebrities (James Cagney, Marx Brothers, Alistair Sim), leaders (Martin Luther King, Bobby Kennedy, Newt Gingrich)…….what made them who they are?  What drove them to ‘take on the world’?

Everything I read is always with ‘a grain of salt’ as they say.  But you can find out a good deal if you open a book with an open mind.  Such was the case of my reading True Compass: A Memoir. The insight to who Ted Kennedy was and why he was the “Lion” they said he was when it came to healthcare is explained in this book.  It matters not your political views, the man was a Lion indeed.  If it is a story of someone in real life, it interests me.

I’m not here today to suggest books to you but I am here to inform you that I have found a huge amount of joy, and more importantly knowledge, in reading about what interests me.  There is much written online in columns and on posts, and many in the diabetes online community have also written books too.  Their books not only will inform you, but it might give you a little insight to what makes those, you see all the time but may not really know, ’tick’ as well.

We are an interesting lot, this diabetes family of ours.  Find out a little more about them.  Share with us.  What would we see you reading today?  What’s in your wallet…..er….uhm…..on your nightstand?

I am a diabetes dad.

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

Diabetes and Your Child….Others’ Opinions??..Don’t Be Stepped On!!

stepped onI always found it hard to keep my tongue in places when someone else thought they had a ‘better way’ to handle our children and their diabetes.  I’m all for helpful hints and even encouragement, but telling me what to do??????…….that was a no-no.

And rarely, if ever, did we stand for it.

I’m not speaking of a discussion with give and take; this is the over-bearing opinions from people who ‘know better’.

As you raise your children, did your parents (or for that matter, did anyone) tell you what you should do?  How did you handle that situation?  In most cases you, probably, told them that you knew your child and that you had it covered.  The question becomes; how strongly did you let the other person know to mind their own business?

Dealing with your child’s diabetes, is no different.  There is the stopping cold answer: You cannot possibly know what this is about so please refrain from telling me what to do until you have dealt with this disease 24/7/365 for the last 3 1/2 (or whatever amount of time) years as I have; it is impossible.  Here is the catch; when you are finished that statement…say nothing more but look them dead in the eyes until they move, squirm, or apologize.

There is the sweeter version: Thank you for your input, I’ll weigh what you say but the management is something we have pretty much mastered.  It’s different for us who live this day-in-and-day-out than just being a spectator at what we do.  Completely different.  And again, just look at them until they respond.

There is the ‘WTF” answer:  This gets ugly and usually ends up in a yelling match and no one wins.

There is the no response:  This is where we grumble under our breath, walk away, and say nothing.  No one wins here also.

If there is someone who spends time with you and they always seem to ‘know better’, and this includes parents, do not be afraid to ‘nip it in the bud’ immediately.  Strong, loving, firm, and be done with it.  It’s hard enough to deal with diabetes; tell Monday morning quarterbacks to keep their conversation to football.  No one gets walked on………..unless they want to be walked on.  Make the call.

I am a diabetes dad.

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

 

WANTED: ‘Celebrities’ to Inspire Kids w/T1…..NOT SO FAST!!!!!

Marissa MedalWe see it all the time.  Either something happens, or a child is newly diagnosed, and the search for a celebrity is sought to help the child know that they can do anything with diabetes.  Sometimes it’s new…..sometimes a reminder is needed.  Celebrities are fabulous and it is great they share their stories.  But I believe the examples we seek are much closer than we could ever imagine.

Along with a few friends, we have the video shot and we are in post production on creating a video of over 250 pictures (that you sent), and film from a Barton Camp, showing how  OUR KIDS WITH DIABETES are in living life to the fullest.  THEY are the examples to follow. They are the inspiration.

When I saw the picture I posted today, I burst into tears. Some at the sadness of seeing Marissa Hitchcock Town having diabetes for so long; but mostly at the joy of knowing who Marissa is and how she has lived and how diabetes has stopped her……from nothing.  I’ve enjoyed a wonderful long-time friendship with my brother-in-arms, Jeff Hitchcock, his wonderful wife Brenda, and their family.  I have known Marissa Hitchcock Town for a long time.  I still get choked-up when I see the photo of Marissa at camp receiving an award for giving herself that first injection.

This photo of Marissa receiving her 25 year Lilly Journey Award is about as much an inspiration anyone else with diabetes needs to see.

Journey…..indeed.

Marissa family shotMarissa will never tell you that this journey has been easy but she will tell you that it certainly has been an incredible one.  We can look at the years Marissa spent pursuing her dream and receiving her nursing degree (and is now a Diabetes Nurse Educator), or her working with other kids for years, teaching them how to manage their diabetes, or even her growing up and helping so many other organizations and people in this world with diabetes; and most of all—we can see the happiness in her family with her husband and son.

Being diagnosed at age two is no picnic, this I know from experience with my own daughter.  Watching your child DO EVERYTHING every other child does and have to stop to prod, prick, inject, and treat is not, by any means, part of the description of childhood that anyone would ever ask for.  But to many of us, that is exactly what happened.

It’s not what happens to you that controls your life; it is WHAT YOU DO with what happens that determines your outcome.  It is what YOU decide for your kids and/or yourself that ‘makes’ or ‘breaks’ a person.  We all have had ‘life’ thrown at us.  In this aspect, none of us are different.  Some have had more than others.

It is no small feat to live with diabetes, doing it for 25 years on a journey that YOU navigate……….and thrive, THAT IS WORTH recognizing.  So the next time you are looking for someone who has achieved much in this world, even at a young age, Marissa Hitchcock Town is a perfect example.

Marissa is not a celebrity.  She does not play football in the NFL, race a car, swim across bodies of water, or climb Mt. Everest with diabetes.  She does, HOWEVER, live a full and complete life with HER diabetes.  And when all is said and done regarding living with diabetes, it is the best thing we can hope, pray, wish, and/or desire for any and all of our kids.  Congratulations Marissa and thank you for all that you, and Adam, do for all of our kids with diabetes.

I am a diabetes dad.

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

 

“Pssst–Parents??” A Message from Your Child’s School…uhm…the Building!!!

School_BuildingDear Parents,

It’s me, your child’s school.

I know that may seem weird, I mean I’m not the principal nor a teacher, and surely not the school nurse…….I’m just a building; what do I have to say of any importance….right?

But I do.

First of all, your child looked great for the first day.  Really.  It was quite clear that you took much time to find ‘that perfect’ outfit that would show them off and also make sure they “looked cool” to their friends, and also their NEW friends.  Just a word from me; you succeeded.

I noticed that your child has many diabetes supplies and that can only mean one thing; they have type 1 diabetes.  I’m sorry for that, it must be difficult when they are so young.  I have been around a long time and I have learned a thing or two which I would like to share with you.

Over the years I have had school officials who do everything they can to make a family feel comfortable with a child in school with diabetes; and there was also a time I thought they could have handled it much better.  We will have to see what this year brings.  But a few tips for you, if I may.  I have noticed a few things over the years.

School officials have quite a few kids inside me for which they must give attention.  It is so hard to get to know them and in the beginning it is tougher than usual.  Every parent thinks THEIR CHILD is the only thing that matters, at home that works well; add them to the so many other kids?????—not so easy.  Please remember that point.

Children with allergies–we have 42 this year, 3 kids with cystic fibrosis, 18 with special needs, 10 with other illnesses and we have 6 children this year with type 1 diabetes.  Plus the school officials must tend to the normal everyday aspects of teaching.  As you can see, there is much to handle.

You can be firm with them, they understand that this is your child, but always be polite.  Anger and accusations just begins a divide.  They more in control and organized you are, the more of an air of mutual cooperation will be received.  You being organized is a HUGE help.  The officials do not always understand everything with your child; be ready to explain it—-especially when our physical education teacher may completely get it wrong.  GREAT TEACHER but the error is just a lack of understanding, teach it once and you will not have to do it again (usually), but be ready as everyone is not as in-tuned with your child as you are, I think you understand that point.

Sometimes the error may be pretty large…..it is at THAT time more than any other that your understanding is needed.  I know all of the teachers, the school nurse, and even the custodial staff—-they all LOVE kids; this I know to be true.  When a mistake is made, they may get pretty defensive if accused, or confronted, but in most cases they will feel horrible when they have time to think about it.

No one enters me everyday with any other idea but to make life for the kids better.   Well maybe a few but no matter how hard I try (I even dropped a brick on one of them once, it did not help) there are a few ‘clunkers’, but you will find that in any business.

For the most part, the people inside me are ‘good people’ with GREAT intentions.  Together we may all need to learn some things but patience, understanding, and explanations more than confrontations always will work better.  Discuss with, not ‘down-to’; and we will all have a better year.

Thanks for listening today, I just wanted to come to you personally.  Also, I cannot be everywhere all of the time……..but if you have tried everything you can to no avail……let me know.  I have been known to drop a brick from time-to-time to knock some sense into a few folks.

Have a great me (school) year.

Regards,
Your child’s school building.

I am a diabetes dad.

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

 

The Way WE Treat Diabetes……Should be Incorporated at the United Nations!

war shipsArguments.  Conflicts.

Whether with your spouse, your child, between siblings, and any other combination in between.  If you have a dollar to bet, you can bet that a conflict will arise in your home in the not-to-distant future.

When these incidents occur, it is no so easy to switch gears and go from heated discussion to loving care-take. There must be times when you are just ready to blow through the roof at something your child has done.  And what happens?  In the middle of the discussion you notice they are a bit pale, or their eyes are a bit glassy.

Uh…oh.

I actually do not know how many times we have been in that position in our 20+ years at this with one child and 5+ years of having two children with diabetes.  What I know is that we have learned a very simple formula.

Diabetes trumps everything.

When it came to taking care of the moment, obviously, taking care of a low or a high took the front seat when needed.

As I look around the world today, in so many aspects from conflicts to war, I cannot help but think how much better we would all be if something could capture everyone’s attention from the negative to someone in need.  When it is our child, we HAVE TO give the focus needed at that moment, right?

There is so much pain in so many health issues right now, don’t you think this world would be better off if some people reacted as we do when our child needs us?  “We’ll get back to the conflict in a minute, we have to tend to these 10,000 homeless.”  “Let’s place this anger on the back burner for a bit, there are 5,000 kids who have no medications and we need to help them.”

“But we will continue this later…….we can continue it later.  This is more important.”

Later will come.  And the anger/conflict will seem just a tad-less important and/or just not worth the energy to continue.  Why cannot the world see this; why cannot the world act like this at a time when it is needed?

Sometimes anger makes us see the one and only point right in front of us.  It is at these times that we must force ourselves to look to the right and the left.  All of the energy is better spent in a humanity effort elsewhere….no?

SIGH.

I am a diabetes dad.

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

Frozen, Elsa, Let it Go, and the John Lasseter Interview—All of it and His Son with T1.

John LasseterI am informed that our friends at Aubrey’s Army website has a link posted to the John Lasseter video from last night’s television show on ABC; The Story of Frozen; Making a Disney Animated Classic.

On the video, Mr. Lasseter speaks of Frozen’s character of Elsa and how she, in some ways, parallels the life of his son with type 1 diabetes.

As I promised in yesterday’s article….click here for Aubrey’s Army website, and the link to the comments made by Mr. Lasseter.

I am a diabetes dad.

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

 

If Only….in Our Favor. A T1 16-Year-Old Driver, Makes the Right Call!!!

If onlyHow many times have things happened where we said, “…if only….”?  If they were only a few minutes earlier or a few minutes later, the catastrophe would have been avoided?

“If Only”.

A while back I started noticing how many times, “if only in our favor”.  How many times we have the story end in our favor and ‘if only’ is really nothing to the story.  Yesterday was a story of “if only in our favor.”

Yesterday I read a post and after I read the post, I contacted the mom who wrote it and asked her if I could relay it again today because it was just so powerful.  The thought of what might have happened still sits in my gut today.

A young man with a license at the age of sixteen, diagnosed since he was nine, had an agreement with his folks that he would text his blood sugar number before driving.  In their family this works and their son does so.  Yesterday he text he was 55 to which she immediately replied and called him.

The mom (with ‘that mom’ sixth sense in absolute high gear) stated to stay there and that she would grab his father and come get him.  When they arrived his head was on the steering wheel and ‘he popped’ up and said he was 67 and ate 12 more carbs.

He got out, gave his dad his keys and said nothing to the contrary of what he was asked to do.  No arguments…….he knew the rules and he abided by them.

I commend this young man for listening.  It was just 2 miles to his house and he could have easily thought, “I will be home in a few minutes—-I’m okay.”  But he did not drive home and if he had; that could have been the biggest mistake of his young life.  My hands still shake as I read what could have been the end of this story.

But this very intelligent young man beat “if only” before it could have the need to appear.  The damage that might have happened to him or to others is now only imaginable…….and actually we don’t even need to think about it because on this day, this young man made the call.   The right call.  And now it is only a story.  What a remarkable call by this sixteen year old.

My hands are still shaking…….

I am a diabetes dad.

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