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’.

Do You Need a Liferaft??????

liferaftOnce upon a time there was a big storm and a man had evacuated to his roof as the waters slowly made their way to surround the house all the way up to the roof level.

He cried out, “God help me.”

As he waited for an answer a man he did not know was in a little row-boat and yelled to him through the driving rain, “Friend, hop in.”

“No he screamed back, my God will be helping me.”

A few minutes later a rescue boat came by and the fireman shouted, “Jump in and we will get you out of here.”  The man yelled back that he was okay because his God was going to send angels to help him.  Realizing the man was steadfast in his belief, the fireman moved on.

A few minutes later, with the water level now at the man’s waist, his neighbor passed by, ‘Neighbor, jump in and we’ll float to safety.”  “Thank you so much but my God will save me with what I am sure will be legions of angels, I am faithful.”

The neighbor moved on.

The waters rose and the man surely drowned.  When he got to the pearly gates he asked God, “Why in my hour of need, did you not send me your angels to help.  I screamed out and you did nothing.   WHY?”

God answered, “I have no idea what you mean my son, I sent you a perfect stranger, a fireman, and your neighbor to save your life and you did not take my help”

As I am in the middle of the week and attending the Friends for Life Conference, I have had a chance to meet many grandparents.  Their stories are incredibly fascinating but more so I have learned how many families kept their grandparents at a distance in the beginning days of diagnosis.

I have had the chance to speak to some in Orlando this week who have shared stories as Aunts and Uncles who help when a child is diagnosed and continued through the years as a ‘help-care” with families where diabetes is now in residence.

Are you like the man on the roof, who has help all around but refuses because you are waiting for some grand savior to come help you so you can find some time to yourself?

Have families offered help and you say, “No, we are okay.”  Do you do that?  Perhaps when a family member, or a friend, says to you next time, “If I can ever do something just ask.”  You should say, “If you really mean it, I would love to have just two hours to be myself, could you come by and watch Susie for just an hour or two, if I don’t find some time for myself I will explode.”

I am sure they will say yes.  I am also sure that there are families who will never get that offer and I am sorry about that fact.

But to the many I say look for that time for yourself, to be with your partner, or whatever two hours will buy you.  Don’t be SOOOO brave and go it alone and tell everyone you are in this all alone.  When it is offered, say yes. People are there, people will help, don’t just stay up on the roof.

I am a diabetes dad.

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

Our Children Need the Sign to Guide Them Home……Will You Give it To Them?

SwanThe picture s a Swan.  It is a cute ‘thing’, Maria and the others in the housekeeping staff, make with a towel here in Disney, where I am for the Children with Diabetes Friends for Life Conference.    The creation will usually find their way into the window, or it could be a favorite stuffed animal, or even a hand painted sign.

Parents place these in the window to guide their children back home to their room.  Here at Disney’s Coronado Springs, the front desk tells me that there are 2109 rooms at this location and many doors and windows start to look the same very quickly.  Kids who are old enough to roam the place sometimes need a beacon to guide them back….these are an easy way for kids to find their rooms by looking at the windows by the front door.

As soon a I saw the first one on this trip, it took me back to the first time we were here and the kids were not even in their teens, a life time ago it seems.  As I sat in my room reading my emails, those days seem like a long time ago.

Our kids grow up so very quickly, don’t they?

TJ was just starting to grow, Kaitlyn was fairly new wearing that newest of advancements called the insulin pump.  And here we were at Coronado Springs to learn more about diabetes just as over 3000 people will do as they converge here over the next few days.

Their lives, of course, are about to change.  The so many people who come every year share their fears, their feelings, and the way their diabetes world exists.  We, as many of you, continue finding ways to learn and to share these findings to better their worlds with diabetes.

Perhaps it is a camp, or a seminar, or a support group that is chosen to learn more.  In as much as I have already stated how important I think the DIabetes Research Institute’s BioHub is in our wait for a cure, waiting for that cure must be spent on obtaining the most comprehensive education we can to start living……..NOW.  And the ‘now’ is better education of everything out their in management tools and techniques to help our children.

Help our children to obtain the best blood glucose numbers that they possible can.  Not because they will have a lower A1C (and they will), not to please the doctor (which it will), not to feel better about ourselves (which will happen), but for the singularly most important reason there is; THEY WILL FEEL BETTER.  And when they feel better they can accomplish great things.

So no matter where you choose to educate your self about diabetes, congratulations because there is a lot out there and sometimes, like 2109 rooms, it can all almost look the same.  And in the long run education is what we need to guide our children home, just like a symbol in a window.

I am a diabetes dad.

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

Summer. A Choice That is All Yours? What Choice Will You Make?????

Beach ChairsWell……..Memorial Day Weekend is behind us and that means it’s time for summer.  There is something about summer, isn’t there?  Walks on the beaches with friends, jumping into pools with your clothes on,  b-b-q’s, picnics, baseball games, pools, beaches, fishing, kickball games, amusement parks, fun-fun-fun in the summer sun.

I remember my summers growing up.  Every summer, it seems, there was something to do that have long since became fond memories.  I was a Newsday (our newspaper) delivery boy who meant at some point during the day; I would have to stop whatever I was doing and delivery my newspapers.

My friends would sometimes come with me, and I’m sure they got annoyed at some point about that aspect, but I always had money in my pocket.  I rarely ever asked my parents for money.  Money is important to have when a kid is faced with summer fun.  Newsday always had contests to Palisades Amusement Park, Mets/Yankee Games, and other trips that I would always win.  My friends would come to some fo those also.

I also had that ‘magical summer’ as I was older where I performed in ‘Summer Stock’ Theatre in Salem New Hampshire.  A life-highlight that I will never forget with a group of people who changed my life forever.  I had fabulous roles that summer and it was here where I realized just how much I truly loved the stage.

And once we had kids, our summers all changed.  All for the good but watching them grow was always amazing and became more important than other things.  Different and so rewarding because these are our kids…..and they are just so amazing, aren’t they?

Weeks and weekends at our summer home, neighborhood gatherings, kids getting taller, our kids’ first jobs, dates, and car all enjoyed throughout the summers.  To me it always felt that the three months of Summer contained more than the other nine combined.  Summer is just a wonderful time of the year.

When diabetes entered our household it also added another GREAT part of Summer and that was our trips to the Children With Diabetes Friends for Life Conferences which happens each July.  The memories and the knowledge we gained was monumental.

Summer is just a great time; and those of you who have diabetes in your household, well you have a choice.  Summer has remained, for us, just a wonderful time of the year.  You can go out there everyday and realize how much your life sucks with diabetes; and you can let the world know just how horrendous your life is with everything that must get done.
And. It. Does. Suck.


You can choose to MAKE SURE you live life to the fullest and let your kids do the same.  Do NOT LET DIABETES win this summer; take some small step to get back to the wonderful feelings and events that summer offers.

PLEASE share with us all WHAT YOU WILL DO this Summer that will be FABULOUS….let others know how diabetes will not stop you and your family, whatever it will be—-please let us know; we want to know.

Maybe even jump in the pool with your clothes on.

I am a diabetes dad.

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

A World Without CWD FFL? What Does That Mean to YOU?

CWDLogoThis headline caused one of two reactions when you saw it; “WHAT!!!!!  What is going on?”  or you said to yourself “What does CWD mean?”

Well my answer pertains to both groups.  The meaning of the headline for those who know what CWD means is to imagine what your life would be without it.  And there is a reason I am asking you to do that which I will explain in a minute.

To those who do not know; CWD is the Children with Diabetes and the FFL is their Friends for Life Conference held annually in Orlando Florida. 

As I start to get myself ready to head to this year’s CWD FFL conference, I find myself imagining what my life would be like if this great group of people were not in my life.  Not just the people who lead this organization, but the people I have met over the years who have become real treasures.  The people who are friends since the frist ‘get together’ in 2000 and the many I have met since.

Plain truth is; I can’t imagine.  There is not an aspect of diabetes in our household that has not been impacted by things we have learned and people we have met.  There is no substitution for meeting, and being with, people from all around the country who are going through what we are going through.

Those who know need no explanation; those that don’t understand, try as they may, just never will.  They can’t.  To be with over 3000 people who all ‘get it’ is a pretty amazing feeling.

I have called upon and been called upon so many times that I could never count.  We do because we know what it is like to be at a certain point in our lives.  We have learned, loved, lost, hurt, educated, laughed, observed, balanced, enjoyed, challenged, and even cried a few tears together.

My saying has always been to beg, borrow, or steal BUT GET to this conference.  You can learn more by clicking here.  Some really inspirational people will be presenting and attending this year, click the link and find out.  CWD FFL deals with the ENTIRE family dynamic; both collectively and individually.

I still like the mom’s response who stated she thought it would be this very impersonal large conference but it was completely the opposite.  I suggest you get down there…..you will be glad you did….spend some time on the pages learning about it.

Each year I think of the tens of thousands of people who have attended this conference and how they have shared the fact that their lives have been changed.  I am one of those people.

I am proud to say that I am a CWD dad.  Find out for yourself what that means and hopefully we will meet this year in Orlando.

I am a diabetes dad.

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

JUST IN: Gary Scheiner, MS, CDE….AADE’s Diabetes Educator of The Year

Gary ScheinerIntegrated Diabetes Services FB page just announced that Gary Schneier just received a call from the American Association of Diabetes Educators’ VP of Community Affairs and informed him that he is the AADE’s choice for Diabetes Educator of the Year.

Gary is to be congratulated for his herculean and untiring efforts on educating those, like himself, who live with type 1 diabetes everyday.  He is the perfect choice for this honor and please join me in letting Gary know how much we appreciate his work.

The CWD FFL Faculty page states:
Gary Scheiner is a Certified Diabetes Educator and Exercise Physiologist who has had type 1 diabetes for more than 25 years. He owns and operates Integrated Diabetes Services, a private practice located just outside of Philadelphia specializing in intensive insulin therapy for children and adults with type 1 diabetes. He and his staff of diabetes educators provide consultations throughout the world via phone and internet. Gary earned a BA from Washington University in St. Louis, and a Master of Science from Benedictine University. He received his diabetes training with the Joslin Diabetes Center. In addition to serving on the Children With Diabetes faculty, Gary is an active volunteer for the ADA, JDRF and Setebaid Diabetes Camps. Gary has written five books (including “Think Like A Pancreas”) and dozens of articles on various topics in intensive diabetes management. He has received several awards for his teaching tools and techniques, and speaks regularly at regional, national and international conferences. A husband, father of five and avid sports fan, Gary has been a pump user since 1994, and a CGM user since 2006.

AND NOW he can add AADE Educator of the Year.

Congratulations Gary—you soooooooooooo deserve it.

I am a diabetes dad.

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