Worse than Falling Off the Horse………I Missed CWD FFL

I have successfully landed in the land of physical therapy and am officially ‘post-op’.  At an eventual time in the not too distant future, I will land on my feet again….hopefully better than new; or at least better than my pre-op status.

I have learned that I’m not a good patient.

I find it hard that people have to do anything for me.  I was never good at it, and will never be.  I have always called myself a ‘give a gift’ type person, not a ‘receive a gift’.  The very idea of not being able to do for myself is worse than the operation itself.  Someone else cutting my toe nails makes me cringe beyond measure.

I was operated on Tuesday, June 25th.  It was my second operation in several months (I really did not fall off a horse, time just has worn away my knees leaving nothing but excruciating pain).  The first was pretty standard on the right knee, just minor. The pre-op MRI of the left knee showed that it was going to be a tad more difficult than one’s normal knee-replacement.  The standard 90 minute operation rounded out at just past 4 hours.  All is well but recovery would be long and I’m barred from airplane travel for months.   Easy for most, but I live in airports.  And LOVE doing what I do because all of it takes me to people who are doing wonderful things in our world of diabetes.  For my kids, for your kids, for you.  So being told I was grounded has been tough.  So saying, “stay off planes” is so much more than it sounds.

Originally I had the planning of the two operations perfectly planned leaving enough time to ‘get back in the saddle’ with plenty of time to spare.
The worst part was when it became clear to me that CWD’s Friends for Life (CWD FFL) would have to be missed.  No one will ever know how crushed I felt as that realization set in.  As honestly and plainly put as I can say it, my kids are alive today because of what we learned at CWD FFL over the many, many, many years we/I have attended.  It has been my lifeline for years and anyone who knows me, also knows that fact.

The only thing worse was making that connection to Jeff and Laura informing them that I would not be attending. That would be the facing the reality that I was not going to be there, real.  After I let them know, I stared out the window for a long, long time wiping the tears off my face.  It was made a tad easier once the conference began and it was great to hear from so many during that FFL Conference week.  From the conference perspective, my absence was surely nothing more than a blip, if even that.  But TO ME, a piece was knocked out of my heart to not be in attendance.

As I recover, I think of so many who are going through such worse things than my present position and it shuts my mouth and keeps me working harder on what I need to do to get past all of this.  My body was saying…….this is the time to get this done, so I listened.

I’m almost self-sufficient again being less of a pain-in-the-butt to Jill, who has been nothing short of an angel caring for what I could not do for the time I couldn’t. I get stronger each day and continue to work at what I need to work at pushing the envelope; just enough to move ahead quicker but not do more damage in the process. I thank the so many who sent such warm wishes over the last month or so.  Your encouragement and caring words truly carried me through this, and I honestly share with you how important it was to hear from so many. I tried to stay low-key about this whole thing, and if you are reading this and not knowing what I am talking about, good, it’s really how I wanted it.

There is so much to do and it’s good to be ‘at it’ again. Too many people need advocacy, education, and a cure.  So onward.  And again, thank you for caring so much.  Let’s get back to work.

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

Why Live Life in Fear When You Can Live it to the Fullest

CWD Smile Face quitters winnersI heard this statement from a person at the Children with Diabetes Friends for Life Conference in Orlando Florida this week.
“I refuse to let diabetes dictate what I do”.
I like that saying and I like it a lot.  It sort of summed up what thousands of people heard this week at this, the 18th Friends for Life Conference, sponsored by the Children with Diabetes.

When we first became active in diabetes causes after Kaitlyn’s diagnosis, I became the Executive Director of the JDF (now JDRF) Long Island Chapter.  At that time we were one of the handful of chapters chosen nationally to serve as an experiment for a new idea called a walkathon (that for years, was really only run by the March of Dimes) to help increase visibility AND revenue.  The JDF was doing walks before, but they were about to catapult to a whole new level of success.

When I became the Executive Director, the chapter was reeling from the death of a young man named Angelo Centano.   Apparently Angelo had many complications but he also had this incredible spirit, an incredible sense of humor, an incredible disposition, and an uncanny way to get things done despite his many physical limitations.  One day I found a note in my desk and it had a quote on it from Angelo.  It was a simple note, but a powerful note nonetheless:
Quitters Never Win, Winners Never Quit.

I’ll never forgot it.

There are many people who lost their battle against diabetes, many.   You have read about them and so have I, knew quite a few also.  Every single person, no matter their age, that I know who we lost to diabetes was ALSO living life to their fullest when they were taken.  They were not comfortable to just live life in a bubble or on eggshells, THEY LIVED!   I have also felt that the people who choose to believe that they can do ANYTHING with this disease do so and pay homage at the same time, in a way, to those who are no longer with us.

No matter what life throws at us (and make no mistake, we all have something), we cannot avoid how it hits us but WE CERTAINLY can get out there and make sure that we are not stopped…..and we shouldn’t be stopped, ever.  The only thing surpassing all of the incredible knowledge given this week at CWD, all of the wonderfully talented people who did the teaching this week, and all of the great times; is THAT sense of empowerment that even with this disease…….limitation is truly ONLY limited by your imagination.  It’s given to everyone…………………….by everyone.

Today many people said goodbye when they left Coronado Springs to the many, many new friends they all met, and the old friends they have known at this most incredible conference.  They inspire each other to do better.  The push each other to the limit to succeed.  They have instilled in each other the absolute belief that quitters never win and winners never quit………what are you doing to get back in the game?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.


This is Not a Story of Hillary Clinton…Well, Maybe a Little….Not Really.

HillaryDid I get your attention?  Good.   When I was involved in government, I worked for the highest ranking official in my town.  It was years ago of course but I remember that during an election, folks involved in air-tome (radio and television) were required to give opposing candidates equal tome.  If a story was done on Candidate A for 2 minutes and 49 seconds, one would do the same for Candidate B.

It is, sort of, with that thought process in my head that I follow-up yesterday’s story bearing Mr. Trump’s image, with a story today regarding Hillary Clinton.  (My disclaimer) I’m by no means implying nor endorsing either one as the presidential candidate for/of their party.

A while ago Mrs. Clinton gave a speech and used a phrase that I think is also very applicable to our community.  It garnered many conversations.  One part of it stated, “…..it takes all of us.  Yes, it takes a village….”.  Many people commented on my article yesterday about how; we all need to be involved, or how hard it is to be involved, or how just living with diabetes is enough to maintain; and all would be correct.

But furthering Mrs. Clinton statement of THAT village, I ask if not that village; than who?  You see a village is made up of many facets and aspects.  For those in the village who cannot maintain it, for whatever reason,  it ‘s up to the rest of the village to carry what is needed to get the job done.  Whatever that entails.  Because if the village does not help itself…..one needs to ask, who will?

So I first need to say thank you to all those who do so much.  YOU are the ones making our village work.  There are super-powers out there who give and do all the time, but there are also those who hang an education poster, because THAT IS ALL THEY CAN DO…..and you know what, that’s fine.

But we must continually ask ourselves, “…what more can I do….to help our village….”.  Because if we stop asking, the chances are that no one else will care like we do.  This diabetes world is OUR VILLAGE……we can do all we can to educate, empower, and thrive to make it work……and if it’s within our strength to ‘not do nothing’, well we need to do just that………but the only one who can answer that question honestly……is each of us.  Because at the end of the day NO ONE will take care of our ‘own village’…..more than us.  Thoughts?

I am a DiabetesDad.

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



This is NOT a Story of Donald Trump….Well, Maybe a Little….Not Really.

Donald TrumpDid I get your attention?  Good. I do not want to get political here but to make a very interesting point……and to utilize that point in our diabetes community.  If you look around the media/public/online world as a whole, as a general rule, it’s safe to say that the majority of information and comments able to be read/seen/heard about Mr. Trump are not flattering—this statement is more of an observation than anything else.  If we agree to that point, we can continue.

Again, and bear with me, my comments today are not a reflection of Mr. Trump but rather to ask a question.  Let’s assume for this discussion, I’m just speaking of those reactions in his own political party: if it’s as I stated, why aren’t the election/polling numbers matching the number of adverse comments?  That’s not the questioned to be answered either.  Again, bear with me.  I’m NOT REALLY asking about Mr. Trump, but rather to make a point.

My point is, as my mother taught me, because something is important to you, does not stand to reason that it’s important to others.  Just as what people say and people are doing in Mr. Trump’s world do not match up as in Mr. Trump’s results (thus far), these thoughts make me ask; are the things we seek and believe we see as important in the diabetes community really NOT what everyone feels as important?  Are the feelings and/or actions, and/or lack of action taken, reflecting the feelings of the larger number of those interested in our situation?

As I watch elections and exit polls, and strategic polls, one after another, I keep asking myself; why do those numbers not match what we are seeing/reading/hearing about this man?  Is there a lesson for us as we all continue the efforts of education, inquiry, and even fund-raising in the diabetes community?

Here is a thought.  Let’s say that there are about 3 million people (JDRF’s number) people with T1D; and we say there are two parents who care about this child.  That means there are 9 million people out there who care greatly about what happens in the lives of these people, including themselves.  If you add just grandparents, that number swells to 21 million people.  Do you feel that there are 21 million people in this world pushing any/all agendas dealing with T1D?  The fund-raising, the education, the awareness……how many are ‘involved’?

THAT IS THE QUESTION I ask today.  My article is NOT ABOUT Donald Trump but rather, what we see in our everyday diabetes world may not be the consensus of how people really feel.  Maybe the majority of people who have T1D, or a loved one with T1D, just do not want to be involved but rather just live their lives as close to normal as possible.  And THAT NORMAL INCLUDES not being involved……….anywhere in diabetes’ causes, but just living.  Are they wrong to feel/act in such a way?

Are we a power of 21 million people……..or anywhere near that number?  Should we be?   What are your thoughts (just do not use this time for political comment—-that’s NOT the point)?

I am a DiabetesDad.

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

Save One Rose, Save One Life; We ALL CAN DO….For Those Who Cannot!!!!

Rose spare a roseA Rose is a Rose…….right?  Well not really.  Not when it can save a life.
Hard to believe it has been four years since this incredible program began but it is…..and it’s so simple….and YOU can do it.

Spare a Rose, Save a Child is an online effort that raises money and awareness for IDF’s (International Diabetes Federation) Life for a Child program, which provides life-saving diabetes supplies to children in developing countries.  There are plenty of ways to give here at home—-on this day—this is something that can help those who cannot.  (as little as $5.00 will help)

Initiated by a group of members from the Diabetes Online Community in 2013, the idea behind this effort is simple: people are encouraged take the typical “dozen roses,” so popular on Valentine’s Day, and donate the value of one rose to spare the life of a child.

Feel good about Valentines Day—-because you made a difference.  Really.

I am a DiabetesDad.

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

Your Child WILL GET SICK……It IS NOT Always Diabetes-Related!

sick-childI have written countless times on the missed diagnosis of T1D and will continue to do so.  I have warned that when someone is not used to diabetes, when it occurs, they may not know the signs including flu/virus-like symptoms.  But there is something very important that you, having a child with diabetes, should know as well.

In as much as diabetes plays such a role in your everyday life, know that the illness that your child may be feeling, may not be diabetes related at all.  Not everything is.  If your child is reaching adolescence know that their bodies will go through enormous changes.  The pains, the growing spurts, are all in the mix in this part of their lives.   If they have stomach pains, it very well may be the flu as well as keytones.

Until you could put a name or a label or most importantly; a diagnosis—-RULE NOTHING OUT.  Ear aches are not necessarily diabetes related nor is the tingling in their legs.  Headaches very well could be diabetes related as that blurry vision your child is complaining about.  It all may be temporary as well.

I don’t know how this happens but I can tell you from experience that Jill became an expert on knowing what was diabetes related and what was not.  She knew every breath that Kaitlyn took and also what Rob was going through when he was diagnosed as well.  She knew…..until she was wrong.

My point is that in my own biased manner, Jill was the best at knowing; more than anyone I have ever known.  But she was wrong at times also, so give yourself a break.  The self-blame game accomplishes nothing.  Be alert at all times and if you are fairly new in this diabetes world, trust me you will come to know quite a bit more than you do today.  Each time you will know more and more.

……….and at times you will be wrong as well…..and the sun will rise and set……onward.

I am a DiabetesDad.

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