Do Not Let the “FIRSTS” Be Diminished by Diabetes.

first haircutI went to get a haircut this week.  As I sat and waited for Peter, my barber, there was a father and young man getting what was clearly is first haircut.  The barber, ever the master, was clearly not giving his first ‘first’ haircut.  The mom was snapping away as the boy sat in his father’s lap making every face possible from a grimace of pain to giggling from the shaver’s ‘tickle’.

Firsts.  There are so many in our lives, aren’t there?  We talk so often of the many ‘firsts’ in diabetes, don’t we?  As the new normal entered our lives we had to deal with the first of everything; shots, day at school, party, holiday, relative gatherings, stupid comments, doctor’s office, meal, bolus, checking blood sugars, through-the-night-risings, and so much more.

The ‘firsts’ became routine and we settled in.  The routine became as much a part of our lives as anything new.  Like getting a haircut.  A million times I have come and gone and never gave a thought as to ‘the first’ one in a very long time.

We become so involved with the management of diabetes, have we let the other ‘firsts’ in our lives get by us?  Have we so focused on the diabetes aspects that we have not enjoyed the many first our children have that are so happy and enjoyable both for our children with diabetes and those without?

Do we still stop and notice the first bike ride,  the first date, the first friends, the first of so many firsts?   Do not let diabetes take that enjoyment away from you.   Know when something is happening that will never be ‘a first’ again. 

Stop and enjoy the moment no matter what it is and the diabetes will wait an extra few minutes; take the time to enjoy the moment you are in.  Like my little friend who was getting his first haircut, you might even find time to giggle again.

Happy Easter to all.

I am a diabetes dad.

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The Loss of a Giant in Wisdom, Humility, and Balance….A Remembrance.

Richard.I write in this space.  I share.  I try to relay to you my emotion and excitement about things that excite me.  I write about people, every day people, who make a difference.  I write to you as I feel things and I inform you on things I learn.  Some things you may know already, some things may be new.  Some things you may agree with and others you may not.  Today, I write about a friend of mine.

A friend, that whether you knew him or not; changed the world of diabetes.  And you should know about him.

Dr. Richard Rubin passed away this week.  He was a giant in our world and he would be very annoyed at me for saying so.  But you need to know who he was because his work will forever impact those we love with diabetes.

He was a psychologist, professor of medicine and pediatrics at John Hopkins School of Medicine and his awards, achievements, and over 200 diabetes-related publications would fill pages and pages of the written word.  His work helped many and made him respected by all of his peers alike.  He was a mountain of knowledge; he was a dad to a child with type 1 diabetes.  He was a father, a grandfather, a father-in-law, a husband, and a colleague.  He was a friend who found the commonalities that he faced with others in his work, his battle for life, and in our world of the ‘new normal’. 

If I could think of one word that Richard taught me; it was the word balance.  His ‘coined’ phrase of Diabetes Overwhelmus is still used today in describing when the world just gets to be too much and what to do to handle a life, or the life, of diabetes.  My involvement with him from the very first CWD Friends for Life Conference until the last time I saw him, where else; but a CWD Conference just recently, enriched my life more each time I ran into him.  How fortunate to know him for the years I did.

His smile was warm, his ability to listen uncanny, and unlike anyone I have ever met he could listen and remember something you may have said a day, a week, or a year ago; and bring it back how it would relate to the topic of discussion you were presently engaged.  He had a gift.

He often spoke of his family who he loved dearly, and would always find time to speak to them.  He taught about balancing the things we do professionally and personally; he would work that balance and he taught us to do the same.   He would freely tell you of his flaws and what he learned in his mistakes.  Good, bad, different, stressful, earth-shattering, joyous, and on and on—-this thing called life was the perfect teaching tool and Richard was the perfect teacher to show us how to maximize those tools.  He taught our grandparents, he taught our adults, he taught our teens, he taught our young children, and he surely taught us who worked with him.

I have very personal stories of advice Richard offered me, and I know I’m not alone as the recipient of those ‘unbilled’ sessions we were all so fortunate to have with a man who understood life as no other I have known; a man who reached across the table and could touch your life with wisdom, your heart with love, and your soul with peace.

His love for photography painted pictures of life.  Animals, plants,….and well, life as it should be through the eyes of a master who understood just that……..life.  There was some comfort in words he wrote recently, “….I am not afraid.”  He knew the battle he had valiantly fought and he was well aware of what battles he had left.  In the end, his body had enough and it was time to go; perhaps a little quicker than we wanted but he would probably tell us that all-in-all it was the right balance of how things like this should go; giving enough time to say good-bye and do a few things he wanted to do.

I saw him just recently and we talked for a while and he turned and he faced me.  “I want to tell you something, Tom”, he said,  “I love you and you’re a good man.  The diabetes world needs you to keep fighting.”  And we hugged each other and he walked away.  Those words will now resonate with me forever.  He was, in his style, saying good-bye.

I cried uncontrollably when I heard Richard had passed.  And now I will do as he stated and I will continue that fight.  We will all continue that fight.  When it comes to my sorrow, my pain, and my dedication to moving forward I will honor him every day of my life by finding that balance at every given turn to move forward.

We, as a diabetes community, are so grateful to his entire family for sharing a giant of a man they could have so easily kept to themselves; a man who was as humble as he was a powerhouse.

A man who taught us how to handle so many fears in this diabetes world we live in and how we all can go forward and understand within ourselves the phrase…….”I am not afraid.”

Rest my friend.

I love you Richard, and thank you.

I am a diabetes dad.

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A Love, A Story, and Diabetes, Trust Me; You Will Want to Read and Share…….Enjoy.

Grandma grandpaI’m up in the air, on my way to many meetings in the upcoming few days.  I was up at 5:00 am today, said a prayer for my friend Laura who was running somewhere at about the same time, and headed to the airport.

Now at 38,000 feet and there is really sweet woman next to me, I’m guessing early eighties.  She sees my Diabetes Research Institute Foundation pin and she asks me about it.  We chat for a while.  She knows a lot about diabetes. 

I ask, “Do you know someone with diabetes?”

“I did.”

My head fills with all of the possibilities of heartache that could come with the word ‘did”.  But then a half-smile comes to her face.  The story is her speaking and this is just how I remembered the story as she told it.  She began:

I met a boy at my summer home when I was 14.  It was a home my mom and dad had for years. He was 16 and a tall skinny kid that could run as fast as the wind.  He was only at the shore for that one summer.  We all pretty much knew each other.  So Matty stood out right away.  He was a real charmer.

We spent a lot of time together and one day I came home and my mom said that I should not hang out with Matty anymore.  He was sick.   He had diabetes.  She did not want me to ‘catch it’.

Problem I had growing up is that if you ever told me not to do something, you had better have a good reason and being sick was not good enough for me.  So Matty and I stayed together all summer without anyone ever knowing.  I never got diabetes.  The last day of the summer he became the first boy I ever kissed.

When we started writing, my mother would take my mail and warn me that he was someone I should not be writing, “no future’, she would say.

So I just had him send my letters to my best friend Susie’s house, and that problem was solved quickly.  As we got older the letters became less……and eventually stopped.  I had read everything I could about diabetes.  Of course back then you had to go the library to find anything out.  I read and read and read.  But we never heard from each other again, for no reason; just life.

My whole life was spent with my summers at our home by the shore which our kids enjoyed and then our grandchildren.  One day, long after my husband died, I was at the ‘grocer’ (as she put it) and I was buying milk.  I saw that face and knew it instantly.  It was Matty almost fifty years later.

He was still tall and skinny and of course he still had diabetes and now we know no one can catch it and how silly that thought was.

She looked forward for a little bit.  I could see her mind going a mile a minute.  She slowly turned her head and smiled at me.

We were married six months later.

She turned her head forward for a long time without saying a word before looking at me again.

He passed away three weeks ago. And a big grin game across her face.  He lived to be 79 and that was much longer than I imagined anyone thought he would. He told me he was waiting until he found me again.  He was lying of course, but I forgave him.  I knew a lot about what to do for him and with him but he was pretty independent with his diabetes and he always took good care of it even though he really never told many people he had it.  He was a very private person.  We had a great time right until the end.

We continued to chat about other things and she asked me about my family and I told her; and when she asked me about ‘my job’ I shared with her my story and why it was my passion more than ‘my job’.  The plane landed and we deplaned.  As I was waiting for my luggage, she came up to me.

Your kids are going to be fine; I just wanted you to know that.  They have someone watching out for them now.

I hugged her and we parted. 

I have no reason to doubt her.

I am a diabetes dad

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Your Input Is Needed…..Live from the Red (er…I mean Blue) Carpet, It’s Diabetes Dad’s People Choice Awards.

Peoples-Choice AwardLIVE from New York…..It’s the Diabetes Dad’s People’s Choice Awards. 

Wouldn’t that be so cool.  As I watched the People’s Choice Awards over the weekend I had this crazy thought.  

But before I share the thought it is important to know what award ceremonies are all about, and that is recognition.  Now of course that recognition could be parlayed into money and fame but the bottom line is the fact that this film or this person is recognized for their work.  Recognized for their work—-well we have so many in the diabetes community who are deserving of that, don’t we?

And of course all of those glamorous people walking up the red carpet and speaking to Ryan Seacrest in their decked out dresses and tuxedos; how exciting! 

First we would need a host.

Then we would need categories.

Then we would need to vote.

All the media would be there made up of health reporters and diabetes publications.  Who will be the winner of this year’s Diabetes Dad’s People Choice Awards.  Of course our carpet will not be red—it will be blue; and the dresses and shoes will need to be blue also (Shout out to the Blue Heel Society)

(Music cue)

hmmmmmmmmmmmmm

Okay—-let’s give it a try.

Go to this link and answer the three questions–a week from now I’ll let you know where we stand. (with our own logo).

Go to the link below—-it asks NO INFORMATION about you; it is just 3 questions, answer them and I will get right back to everyone with who the nomination of host should be and the categories.
https://www.surveymonkey.com/s/diabetesdadsPCA

Might be fun….respond today and I’ll get back to you in a week.

I am a diabetesdad

 

Even with Diabetes…..It’s a Wonderful Life…..What are You Thankful for?

Because we are in the Holiday Season:

The Scene:

I’m laying in the snow and Clarence, my guardian angel, is talking to me.

Clarence: Strange, isn’t it? Each man’s life touches so many other lives.

I wake up, I’m dazed.  Probably too much to drink.  I think I’m in a dream.  I know it surely would be better if diabetes never came into our life.  Clarence does not disagree but he says;

Clarence: I’m giving you a great gift, Tom: A chance to see what your world would be like had diabetes not entered your life.  Yes I know your kids would be better off, but don’t think nothing good  ever happened. 

And it is THIS sentence I would like you to think about today. 

It distresses me when people tell me that nothing good came into their lives since diabetes became the new normal.  the disease is horrendous, and no argument.  I have been fortunate to be on the receiving line of many fabulous things since that time and knowing that I would trade them all in an instant to have never been involved at all; I cannot to that as I HAVE been involved and I am incredibly fortunate.

At the top of the list are the people I have met; from scientists, to other parents, to PWD to great Docs, elected officials locally and nationally, to colleagues, to celebrities, and to so many who made a difference.  I have been across the globe and introduced at state capitols, Capitol Hill, and even the White House.  I have so much to be thankful for and I ask you to recognize the same this holiday season.

What are you thankful for because diabetes is in your life; admitting you would never want to be involved at all.  We get that; but we are here.  We are here together.  My life would be so empty had not so many of you been part of our lives.  And I thank you all.

What are you thankful for, that you presently have, that you would not have had diabetes not entered your life?

I hate diabetes and everything about it.  But the people involved have proved to me time and time again that now that it’s here…..that….well….I have a wonderful life.  And I would change it all in a minute for a cure.

Did you hear me Clarence?

I am a diabetes dad.

All I Can Say is………..Whew!!!!!!!!

Two weeks. 

The most important lesson I have learned recently is that so much can happen in two weeks.  To the hundreds of people who wrote to me and wanted to know how we were doing I both; thank you for caring, and apologize for not getting back to you sooner.

I will not go into every detail here but to say we are all okay, although for a while we hadn’t heard from the kids out in the storm working with the fire department and ambulance–that was some of the worst times.   Some of their colleagues were not so lucky and one, in particular, we pray for who stopped to help people in one car and was hit by another; we await word of that recuperation. 

Damage is at a minimum for us and all trees fell all around the house and not on it.  Our neighbors were not so lucky.  It was a two weeks that we will remember for a lifetime; where the second worst storm to hit the United States fell upon us, an election was held, gas is being rationed, power is still out for many, 30 million gallons of water had to be pumped from NYC’s midtown tunnel, power was lost, there was an attempt to steal our generator in the middle of the night, many friends are cleaning up all around the tri-state area, we visited some incredible people in the UK for the CWD UK conference, stopped for a little bit to visit some places new to us, and our return trip that was supposed to be nonstop from London to New York had to emergency land in Halifax, Nova Scotia for a passenger who had a severe hypoglycemic reaction (more on that in a later article).  A very long two weeks.

Much to write about as we move forward but today is just to say 3 quick points; 1).thank you to so many who sent good wishes; 2.)I have been in close contact with many people who have boots-on-the-ground and have heard of no dire need of assistance pertaining to diabetes supplies in our hard-hit area (still monitoring) and 3.) Remember a Veteran this week…..we have so much for they gave their all. 

I am a diabetesdad.

My Sunday dHero…..artistic license please…..Heroes in a Hurricane

 The winds are beginning to pick up out side.  The rain will start shortly.

It is  clear that the picture I provided today is one from long ago.  It is how we remember our kids no matter how old they are ( I tell everyone it is Jill’s first husband).   I was much younger too.

But with one of the worst storms in recent memory making its way up the coast for a direct slam into Long Island….during the height of the danger….during the height of uncertainty…I know where these two babies will be. 

They are much older now—T.J. is 25; a no-nonsense kind of man who is strong when he needs to be and gentle when the time is right.  He is in our neighborhood  fire department and he has eaten smoke; he has even saved a cat from a tree.

Kaitlyn is 22 and on our volunteer ambulance company serving our community as an EMT.  Her knowledge runs deep and her service is exhausting to witness.

Hurricane Sandy surges and my two oldest will be in harm’s way.  They will do it willingly, they will do it until they are not needed.  People will be running FROM impacted areas; Kaitlyn and TJ will be running TOWARD them.  Kaitlyn will be doing it the whole time managing her diabetes.  She understands the ramifications of anything but good control at these crucial times…..she does not waver.

They will be with others who also are laying it all on the line for others….all are heroes.

So my Sunday dHero this weekend, if it is okay with all of you, are my two oldest children T.J. and Kaitlyn——God keep them safe over the next few days.  I love them to no end.  They are not only my Sunday dHeroes—-they are my heroes everyday for doing what so many cannot.  If they fear, they show it not–this is about helping others.  Godspeed my children and bless you, and those like you, for caring so much during Hurricane Sandy’s wrath.

I am a diabetesdad

Travel…….High Anxiety! One Very Simple Rule will Go a Long Way at TSA!!!!!!

There is a list full of things to do when you are about to embark on travel that will take you through security.  You can find them all over the internet and I’m not going to rehash all of it again today.

I have read where parents have had nightmare experiences with their children and their children have been traumatized by the entire experience of merely going through security.

Here is something we did for years and years ago; and it actually goes way beyond just those with diabetes.  Perhaps it is the actor in me (see my bio) but there is one simple thing we did with our kids that you can do also that may alleviate much of the anxiety.

Role play.

Don’t make it or call it a game (it is not), but take a tool that your child does not recognize which resembles a wand, and have them stand with their arms out and ‘wand’ them with whatever odd-looking item you own. 

“Pat them down” and look through their diabetes supplies like the TSA would do.  Start this a few weeks prior to your trip and maybe even now and again make a beeping sound  and check their pockets. 

If your children are used to something—-they are used to something.  Do not make your actual vacation be the first time they see how security works.  Kids are afraid of the unknown; make the process as normal and as ‘known’ as possible and it will cut down on everyone’s anxiety.  Perhaps not all anxiety–but much.  It is the world we live in now, show them.

I’m a Diabetesdad.