friends for life – DiabetesDad

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

Posted on August 2, 2019 | by tomkarlya | 8 Comments

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.
Uhmmm…….no.
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

Posted on July 9, 2017 | by tomkarlya | 1 Comment

I 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’.

Hey, Moms of Kids with Diabetes—Olympic Moms have nothing Over You…..Take a Bow.

Posted on August 10, 2016 | by tomkarlya | 2 Comments

Olympic parents. Specifically Olympic moms. Ever see them in the stands? Close-up, upon close-up, of the moms who know everything their child sacrificed and diligently worked at to be in the Olympics. Proctor and Gamble even did a commercial about Olympic moms.

Yeah, so what.

Actually I don’t mean to belittle those moms and in fact I have great respect for them, But I also am very aware of a different kind of mom. Moms who go through life with the same hope, the same expectancy, the same anxiety, the same disappointment, the same joy, and the same drive for gold…….but there is no camera showing a national audience the faces of these moms…..in fact there is not even a gold medal awaiting their child…….nit even a bronze….because these moms are dealing with diabetes in the privacy of their own lives, and not in a national spotlight whatsoever.

But make no mistake about it……those facial expressions that you see on TV with those Olympic moms are just as present on these special moms, and are there every day because moms of kids with diabetes are just as diligent, just as involved, just as hoping-for-the-best as any mom of any athlete competing in Rio.

And that’s you (yes, I know—-there are dads too). So to all of those kids out there living with diabetes, this is to your moms who help their kids strive for gold every day in their own lives. The gold of getting EVERYTHING life has to offer. Moms do that. Your mom does that. So moms, Imagine your picture within the rings of the picture I included, these are but a handful of moms; but we know that you could fill the entire city of Rio, if you wanted. Without fanfare, without spotlights, without commercials about what you do…..but just because you are you……you are, indeed, gold.

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

Dear CWD FFL…….Thank You for Saving My Children’s Lives

Posted on July 14, 2016 | by tomkarlya | 1 Comment

Dear Children with Diabetes Friends for Life,

It’s been 17 years since we started together. Wow! Where did the time go?
I don’t know if I’ve ever said this to you before, so I’m sorry it took so long.
Thank you for saving the life of my first child, and also for saving the life of my second child upon diagnosis of this dreaded disease.

After 17 years I looked around this year’s event in Orlando last week and reflected on how fortunate I have been to be here, since day one. To many, I guess, I’m a CWD FFL insider when in truth, I’m just a CWD Dad. I volunteer here, and there…….. as so many others do. None of us are your favorites but what we are is YOUR ARMY of volunteers because in the beginning people were there for us — we must now be there for others. If you are now involved, you should get involved to pass it on also.

You’re not a huge organization with a huge infrastructure……no…..you are a group of people, friends for life in fact, who believe in just plain ‘ol helping. Helping because a two-year old has been diagnose and there is nowhere to turn. Helping because we are up at 2 am and we don’t have to explain it to you. After years of turmoil and doubt, coming here we did something we had not done in a long time, we laughed. That happens when people are comfortable with each other, they laugh. That happens here.

There were so many sponsors present……but not all….not enough. It bothered me that Medtronic was not there this year. Not sure why, its none of my business really, I’m just a volunteer. But when my daughter went on their pump in 1999, I guess families mattered back then. I guess they don’t anymore. I’m sure it bothered you also, and I’m so sorry that it’s such a struggle for you all who plan and coordinate this incredible event all year-long.

You should not have to struggle to get companies involved. People in our world are VERY LOYAL. Friends for Life also means clients, patients, and customers ‘for life’….and they should think about that a little bit. You should not have to seek out companies, they should seek you out to learn how to participate.

When my daughter was a very young age, we learned that education was the equalizer to battling this disease. We learned to do all we could to ‘own it’ so it would not own us. We were taught. We listened. And in-between all of the sessions of knowledge and the updates of research; we laughed. We talked. We grew to love people who needed no explanation when we had to do ‘something diabetes’…….they knew.

And after 17 years, I have watched so many children thrive in the world around them. Mine included……because of you. Us parents learned a thing or two also.

We have been taught and taught well. No easy feat. In fact, an impossible feat if one dare to sit down and actually figure out how it all comes together. But it does. There is only one explanation that can probably explain it. Sponsors who care, volunteers who care, families who care and all who dare to dream of learning together….because good friends do that, but those who do it to save the life of a friend’s child are more than just good friends………we are friends for life.
Thanks again.

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

“Why Did YOU NOT Follow Instructions?!?!?” Sound Familiar?

Posted on February 25, 2014 | by tomkarlya | 2 Comments

From the onset, I want to let you know that I do not have any incredible answers for what I am about to write; but I am ‘putting it out there’ so others may comment on how they have handled this situation which I am hearing more and more.

Parents of the parents. This includes both sides of the families and you can add aunts and uncles and anyone who should be in the mix as well. “Why didn’t she do as I asked?”

The frustration is real. You finally muster up the courage to go out and leave your child with your mom, dad, or whomever and upon your return; you find out that your directions were not adhered to and something was done against your instructions.
Number one. Take a breath. We, as parents, have all been there. Sometimes it is a mistake and at other times it is someone ‘thinking’ they know best. You are given a choice immediately; do you discuss it now or do you wait? I know it is hard but remember this; how many mistakes did we make when our child was first diagnosed? I made some doozies and there was no one there to correct it, we found out through many, many trials. Remember that point.

When we took our child (and it became children when Rob was also diagnosed) home, we had our instructions from the Doctor. We had the opportunity (for lack of a better phrase) of 24/7/365 correcting after time after time of ‘getting it’ wrong. No one is there to tell us our mistakes, we have/had to learn them.

Dropping our child off, and no matter how many times we go over it, mistakes will be made.

I have had the wonderful opportunity to be involved with the CWD (Children with Diabetes) group for some time. As biased as I am, I have found the grand parents track at their Friends for Life Conference in Florida each year to be incredibly useful, and one of the best that I have ever heard. If you have the opportunity, get there; and bring a parent or two. There are scholarships available as well; it is a week you, and your entire family, will never forget. Game changing for sure.

I share that information because as I have been there over the years I have heard story upon story from grandparents. Their roles in their grandchildren’s life are as different as snowflakes. Some heart breaking in fact.

But there are two constants in EVERY single story I have heard. One is fear. Two is they wanted to know more. Not unlike us as parents, but we have no choice but to ‘be at it’ always until we get it correct. Over twenty-one years out, I know I’m still ‘working out the kinks’. How about you?

I am not saying that our parents should not work harder when they watch our kids. I am not saying just forgive them when they ‘insist’ on doing things their way. I am saying, that the more kids with diabetes are watched; cared for; tended to; the better the chance the caretaker will ‘get it right’. Just as we did/do every day.

I am sure there are people who are involved in situations that are not ideal and the frustration level is very high. It is my hope that a dialogue can be had with people who have been there and were able to adjust positive; and what those did who were just involved in a cause that was beyond fixing.

I am also a believer that somewhere out there, someone is going through or has gone through what seems like a completely unusual circumstance and can help by sharing. Nothing is stringer than the voice of experience.

Please share your heartache and your success. Through dialogue a map can be charted.

I am a diabetes dad.

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

Diabetes Jeopardy Answer #13 for D-Month. She said “Let’s Meet” in 1999 and Created the Largest Gathering of D-Families on Earth.

Posted on November 13, 2013 | by tomkarlya | 1 Comment

…and the answer is who is Laura Billetdeaux.

In 1999 Laura contacted people online to say that she and her family would be traveling to Florida and if they wanted to meet, they could discuss family dynamic dealing with diabetes. Laura, who has a son with diabetes, thought that only good could come out of this gathering and sharing together. She was correct.

She never thought that an incredible 500 people would show up and it would be the dawning of what has become the largest gathering of families with diabetes anywhere on earth. The Children with Diabetes Friends for Life conference has well north of 3200 people each year where attendees are treated to a buffet of the top professionals in the diabetes world of empowering, managing, and researching for a cure of diabetes.

It has become a family affair with every person in Laura’s family playing a role. people from all across the globe come to the event each year and due to the ‘well-oiled’ organization and planned activity, it is a week they will never forget.

From the CWD website, a little insight about Laura and this amazing program:
A finicky connoisseur of hotel meeting space, cappuccino, and kid-friendly cheese and fruit platters, Laura Billetdeaux is CWD’s VP of Education and Programs. Since 2000, Laura has organized every single CWD conference, always keeping in mind the true purpose of CWD – education and support of families with type 1, and always keeping in mind why it all works – the efforts of so many dedicated individuals. Laura lives in Manchester, Michigan with husband Neal, who graciously and energetically assists with the conference teen programs. They are parents of Sam and Carolyn who both serve as youth faculty at CWD conferences as time allows.

There are scholarships available to those who need financial assistance; everyone should go to this conference, even just once…..your life will change forever.

For Diabetes Awareness Month:
This month, I will be highlighting someone in the diabetes community. They may be people you know, or might not know, but they give of themselves to make this world, our world, with diabetes a special place. I will not get to everyone this month, but it is my hope that perhaps you can be introduced to some of those you may not know.

I’m certainly not the definitive on who should be included….you are. If you think I should include someone, shoot me an email at tkarlya@drif.org and I will do what I can to include that person as well. Welcome to diabetes awareness month.

I am a diabetes dad.

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