Help needed 1One of the best parts of these articles is that it offers me the opportunity to help others when they are in need.  Today is such a day.  If you are a mom or a dad who can help; it would be greatly appreciated.

I have two moms who are in need of support.  Kindly read carefully and if this fits you, please send me an email at tkarlya@drif.org and I will forward it along to the moms who are in need, and sought my help.  Kindly give a brief summary of how your situation is the same and in the subject line of the email please write: Mom Help.

Please share this with other FB pages, the more who see this, the better chance we have of connecting the right people.

Situation one:  A mom is looking for support and guidance.  Her child (late teens) is dealing with T1 Diabetes, Celiac, AND Crohn’s disease (think you are having a bad day?).  Ideally she is looking for anyone who has been dealing with all three BUT IS REALLY LOOKING FOR someone dealing with T1 and Crohn’s.   T1 and Celiac—she has enough help in this manner and we do not need any more.  SO if you have been dealing with all three, or at least, T1 Diabetes and Crohn’s with the same child; kindly email me.

Situation two:  A mom has a son, mid/late teens who can run low in the middle of the night.  It is VERY DIFFICULT to wake him in order to help with these night-time lows and he never wakes up on his own when low.  If you have lived through this WITH A MALE child, she has some questions.  You do not need to answer me here, just let me know that you have experienced this and I will connect you both, but some questions she seek answers for: How do you wake your child to tend to his low?  She has fears about college, what happens when no one is around to wake him?  What does she do if she wants to leave the child with someone else to go away for the/a weekend?  Do teen-age males grow out of this phenomena of not waking up, as they get older?  What tips can you give her; is the only choice to have them go to bed with a little higher glucose number?  They use the Dexcom and they do awake if alarmed, but that is them as parents, she would like to connect with someone who experiences this type of situation.  If this scenario fits something that you have dealt with, please let me know and I will connect you both.

I have often stated that nothing is ever new in the diabetes world; but I have no one readily available for these two situations and I seek your help.  As I stated, if this does not fit you PLEASE do not just leave it alone; PLEASE SHARE this far and wide…….I have to believe that both of these moms can find the help they need.  And if, together, we can get this out here and find them some help; we will all win.   Thank you for your help in this matter; on this day we can make a difference…….together.

I am a diabetes dad.

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


Why……W-H-Y Would Your Wake Up at 4 a.m. to Check a Blood Sugar????

4 amWhy would anyone have to wake up in the middle of the night to test their child’s blood sugar?  Did you ever hear the question; why do people rob banks?   The answer is simple; because that is where the money is.  The answer of whether someone wakes up to check their child’s blood sugar has just as much a simple answer; because they choose to…..and it’s that simple and ALSO no one else’s dang business.

I, for the life of me, do not understand why this is such a debate whenever it shows up somewhere.  One can give all of the medical proof what is and what is not acceptable.  One can speak to 25 people and get 25 different opinions; IT IS YOUR CALL.

For some reason this topic gets a whole barrage of opinions and here is the thing; if it works for you……it works for you; and what works for you will not necessarily work for someone else.  If you make sure your child is 190 at bedtime so you can sleep; your call.  If you wake up 1-2-3 times per night; your call.  If your child wakes up at the slightest low; count your blessings.  If your child is 180 and wakes up to go to the bathroom; count your blessings.  If you do not ‘fit in to any category’ and you have adjusted your life accordingly…….and it works……good for you.

I have come to learn that there are two types of fear.   There is living with petrifying fear that stops you from functioning…..and there is fear that really means respect.  Respected enough to understand what something can do; and to try to harness that respect and handle it the way you see fit.   If people are living in petrifying fear…..they should find someone to talk to and try to shift that type of fear away, or at least to a respect-level.  Petrifying fear is no good for anyone, and can consume; that should be avoided.

But again I, for the life of me, can never understand the way people constantly believe because they had the wonderful ability to sleep through the night and not worry about their child, needs to be other people’s way of life.

Do your homework and read up on what you must.  DO NOT make this decision on opinion or feelings; do it based on a sound judgment after you have found out all the facts.  Have a heart-to-heart talk with yourself on what you believe, but know this:  After you talk to a ton of members from your medical team; after you speak to a ton of friends you trust who understand diabetes—–YOU WILL decide what you need to know and do.  What you decide after that is your call and DO NOT LET ANYONE tell you other wise.

Will it be easy?  Maybe, maybe not–but what it will be; is YOUR decision.  And when it comes to YOUR decision about YOUR family……..that is all you need.  So make the call and get on with the regular-living-life-with-whatever-it-has-to throw-at-you; you deal with enough already.

‘Nuff said.

I am a diabetes dad.

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


I am So Tired of Seeing Those Photos…..

Graduation caps….and it’s ‘a tired’ I will gladly go without sleep any day of the week.  What a joy—an absolute joy seeing all of those incredible kids graduating from ………well everywhere….and attending proms…..well everywhere as well.

This time of year is just so incredibly positive.  The newness ahead; the rites of passage, I find them all so exciting.  My niece posted a picture of her daughter who just played her last concert in middle school.  The pride was abounding, as it should be.  Many cannot believe ‘where the time has gone’.  And I’m thinking, when did the little girl who caught the bridal bouquet at our wedding have the right to feel like time was passing by so quickly?   My nieces and nephews have kids…….seriously?????

So I will take the passing of time and me thinking “crap I am getting old fast” and trade that for all of the wonderful, wonderful pictures of proms, graduations and last concerts.  Milestones are great to witness.  The pictures snapped capturing smiles so large your face hurts.  The absolute joy is great to see.

Achievement is never about being number one.  It is achieving what you set out to do.  If you get high honors when doing it, great.  When TJ played lacrosse in high school, he stated that he felt bad because he was not a ‘starter’, and we would sit in the stands and sometimes he would see no playing time.  Sometimes he would play almost the entire game.  I told him, “You suit up, you have my attention.  Many are NOT on the team.  If I come and see you…and all I see is you practice and not play, I’m just as proud.  You are part of something; a team.”

We all want to see our kids achieve.  I learned a long time ago when Kaitlyn was just two and I knew that EVERYTHING she did moving forward would be ‘doing it with diabetes’ made me truly appreciate the journey.  If you choose to have a goal at being the best in something; I find that so exciting.  But know this; the “BEST” does not necessarily mean you have to surpass everyone else…….it only means that you gave it your all.

And if doing your all/best, gets you on the team, but not a starting position…….why would I not be excited that you made the team?  Achievement is a personal best.  People can always be better than us in ability, but no one can be better than you, doing your personal best to be what you want to be and can be.

So keep posting those pictures and keep getting ‘ol DiabetesDad tired looking at them all because I may get so tired that I have to go to sleep……but I sleep with the biggest grin you will ever see.

I am a diabetes dad.

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


And In a Second……They Were Gone!!!

Toni croppedThere are many things that happen to us along life’s journey.  I decided a long time ago that it’s not necessarily a matter of good and/or bad…….it’s a matter of what I learn.  One of the most valuable lessons I learned in life……was the value of a human life.  The value of a friend.   The value of how important life is and how precious life is.  It was also the hardest lesson I have ever learned.

Her name was Toni.

Toni and I grew up together.  At times we were inseparable.  At times we would go our own roads and meet back again. It started in second grade when I would race my bicycle and try to arrive at her house before the bus would drop her off.  Hours would be spent just talking, pulling leaves off a shrub, and sharing candy.  I really do not remember a time when Toni was not in my life.  It was a bond that was hard to describe; the friend that would come along once in a life time.  The friend that would be forever.

Forever was taken away from me.

I was rehearsing the Sound of Music at summer stock in beautiful Salem New Hampshire/Lowell Massachusetts.  I saw Toni the night before I left.  It was a great time.  “You will make it Tommy (called by my closest of friends); I know it.  We will see you on stage in New York one day.  And I’ll be there.”  If you don’t know anything about summer stock theatre….it’s brutal……but make no mistake; every actor loves it.  Eight complete shows in nine weeks; 5 musicals.  I had very nice roles that summer and everything was about as perfect as can be.  We were treated like royalty by the locals and the newspaper critics were very good to some of us, myself included.  It was about as high as one could be.  The perfect summer.

My stage manager tracked me down as we broke from rehearsal.
“Your mom called, she asked you to call home….she said nothing urgent.”
To this day, the very same thing my mother does to try to keep us calm is always a red flag; things were about as far away from ‘nothing urgent’ as one could imagine.  I raced to a phone.

Her tone told me instantly that this was going to be a bad call.

“Hi.  I needed to tell you that a friend of yours is sick.  Very sick.  Toni is in a coma.”

Nothing else after that statement mattered one iota.  A brain aneurysm.  There was nothing she could do.  I called Toni’s mom and she said, “How did you find out so fast?  I just hung up with the hospital.”  Toni was no longer in a coma, she was gone.

During an air traffic controllers strike (the only plane that left that day from Boston to NY was mine); I had to leave at 3 am, get picked up, go to the funeral, drive back to New Hampshire and be there for opening night.  Tired would not fit into the mix.  There was no option and to miss an opening night on Toni’s account would have made her FURIOUS with me….so I knew THAT is what I had to do.

There was much surrounding the next six months of my life.  Too much to list here.  But the take away I knew was that we will always get older and people close to us will pass.  That’s a part of life.  The loss of a child is an exception.  THAT should NOT be a part of life.  Kids are not supposed to die.  Young people should not die either.  In my early twenties, a woman who had everything to live for, was gone.

My lesson learned in all of that mess was that every single second must be accounted for; to ourselves.  If for no other reason, for ourselves.  Friends are very important to me.  Family is very important to me.  Because in the one-second-act of terrorism or a criminal act, a derailed train, a plane mishap, a car accident, or the failing of our own bodies can take something so precious that we loved so much….very, very quickly.

A mom once asked me how I stay so positive in dealing with diabetes.  “It’s as if you don’t think anything disastrous can happen.  Do you think you live with your head too high in the clouds?”
I answered.
“No, it’s the complete opposite.  I know EXACTLY what can happen in life.  I have lived it.  I have come to understand that the little things that we let get to us, honestly-really-truly do not really matter that much to me.   Not anymore.  Positive is a good energy to tap into.  And even though I will fail at doing it a lot……it is how I TRY to live.”

What some people take a lifetime to understand, I learned too young.  It was not fair.  Life isn’t.  Thirty-plus years after she was taken, she is still thought of; and still missed.  Life was never supposed to be fair……..it was supposed to be a journey.  What we choose to learn during that journey is up to us.

Hug someone you love today……….you just never know……it may become just one second too late.

I am a diabetes dad.

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


Bobby Sox to Stockings……..Awwwwwww to Awe!

bobbysocksThere was a song made famous…….a long time ago….called Bobby Sox to Stockings. It was sung by a few people and you can go to YouTube and listen to it if you like.  The story of the song is about when a little girl grows into a woman.  It was a smash hit and I always liked the song.

How many times have we seen pictures of very young children with insulin pumps and living life despite their diabetes?  How many times have we looked at pictures of little kids giving their shots and thought how cute they are and so young to be dealing with diabetes?

When little kids battle something it just tugs at our heart-strings, does it not?  We think that no child should have to endure anything else but being a child.  A child with no cares and no worries…….but diabetes did not care about what we wanted or about childhoods………that’s the nature of diabetes.

Lately there have been a huge amount of photographs of kids graduating college, and soon that will be matched with a barrage of photographs of high school graduations.  As I looked at one the other day I thought, they have been cute and made us say “awwwwww’ when they were younger; but watching kids graduate, and doing so while dealing with diabetes is a pretty amazing thing to me.

Now I admit that it may be because my kids are older now but make no mistake about it, I am as driven today as I was September 26th, 1992 to cure this disease.  My point is that although they may not be as darling and cute as when they were, say, two-three-four; they are still just as amazing.  Everything they do, they have accomplished while dealing with diabetes.

So I have graduated from awwwwww to awe in what my kids do.  My heart still longs for them and still I’m just as proud.  All parents are proud this time of year and they should be; but only parents of a child with diabetes understands THAT journey.  What makes you proud of your child, now that diabetes has been around awhile?   They have gone from children to adults with diabetes…….I have watched them grow…….from bobby sox to stockings.

I am a diabetes dad.

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


WARNING: Video Will Scare the HELL Out of You….and THAT’s GOOD!

joey saladsI have seen a million videos in my life BUT none like this….if you have a child, watch and more importantly—LEARN!!!!!!   This will change your perspective in anything you have ever taught your child.  I do not know who Joey Salads is but this one video will probably save quite a few lives.  (Click the picture to see video)

If you have young children this is A MUST SEE!!!!!  If you do not—share it to make sure everyone sees it.

Bravo Joey….Bravo.  Share this everywhere you can.

(I will get back to blog week but this was JUST TOO IMPORTANT not to share).

I am a diabetes dad.

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


Clean it Out of the Closet—For Me; Frustration…..You????

Cleaning out the closet w logoThis week is Diabetes Blog Week, the brainchild of Karen Graffeo at BitterSweetDiabetes.com and is the sixth year it has taken place.  Many writers taking-on the same topic…….but with a different take.  Very cool idea……thanks for the opportunity Karen.

Today–Day 3: What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?

PLEASE make sure you add your thoughts on what it means to you, after you read today’s article.

My ‘closet’ needs to be cleared of the frustration I feel in this search for a ‘cure’.  It is not something of which I can easily let go.  It’s the promise I gave to my daughter and again to my son.  But the results in the research world just seem to be so much slower than the research and development of devices and management tools.

Did you ever see the cartoon of Pepe Le Pew (for you younger folks, go to YouTube).  Pepe is a skunk who falls madly in love with a cat who has crawled under a newly painted fence giving the black cat a white stripe down her back; thus causing all sorts of confusion for the star-crossed Pepe who spends every cartoon trying to ‘win her over’……never winning.  Usually there is a point in the cartoon that will have ‘La Chase’.   The cat is all out of breath but Pepe, full of love, is in a twinkle-toe run without losing a breath.

That is how it feels sometimes.  You see; when you know what you want, and a device surely fits that bill, it is easy to throw all of your resources to ‘make that thing’ happen.  When you are unsure what will work, it’s a much slower pace, and a lot of trial and error to get to the finish line.  With a device, you get an idea of what the end picture needs to be, and you work toward it.  With ‘a cure’—-not as easy.

That said, let’s be clear, there has been much trial and error in this device arena as well.  And surely the end product is not going to look like everyone thought it would when the development began and where the thought was that there will be no personal intervention needed……I think everyone now knows that won’t be the case because we are human beings and not robots and our lives will influence something mechanical.  We will always need to be involved in some way. Things change while being developed.   It is also happening much slower than we all thought it would and were told as well, isn’t it?  But that’s okay too.  That is the world of set-backs, FDA governing in research; and all part of ‘the process’.

But we saw CGMs and insulin pumps ‘metamorphasize’ into everyday devices so we can picture that happening. We can see a ‘device’ go from A to Z.  We will get there. But what does a cure look like?  Since it has never been seen before (the closest being islet cell transplantation but with immunosuppression in place, not the answer; BUT some people are still off insulin–so even though not THE answer, we ‘tasted’ some of it), it is hard to recognize where it is hiding.  I have been at this a long time and I know we (the global diabetes community of wonderful researchers) will get there.  But being as closely connected as I am does not absolve me from wanting it any faster.  Being a dad wanting it faster is the frustration that gets to me sometimes.  I need to learn to let that go.  It is counter-productive and can leave one mighty lonely sometimes.

But THAT more than anything else is also the very same thing that keeps me at it everyday.  I have learned not to defend what I feel because everyone has their own feeling and that is their right.  They can support who they want and even say what they want touting whoever it is they believe in, which is fine also; that way we can all learn what is out there.

My kids are at the finish line each holding an end of the red ribbon waiting to be cut as the cure crosses the line.  It’s no secret of the faith I have in the DRI (disclaimer as everyone also knows that I work for their Foundation), but quite frankly (and I have said this before), me being a dad trumps how I feel about any entity……I just want to get there.

And THAT can get frustrating some times…….and I need to clean that out of my closet.  There is too much happening right now moving that process forward, good things.  But I want it yesterday.

I’m entitled;
I am a diabetes dad.

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


DIABETES BLOG WEEK: Keep it to Yourself – Tuesday 5/12

Diabetes blog weekDAY 2 TOPIC: Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.

Day 2 of the 6th annual blog week is listed above.  There is an absolute-ness of things that I will not write about.  It’s kind-of-a line that I have drawn for myself.  My kids have asked me not to write about certain aspects, and I have adhered to their wishes.  If I choose to write about things on my mind….it does not mean I have to share things about them.

It is the same with other family members.  Again, it’s my choice to write, not theirs.  I must be respectful of those things that have been asked.  I could tell you more……but….I will stop there.  Are there things that you will not share out here in the online world????….feel free to share them as well.

I am a diabetes dad.

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



When it’s Out of Our Control……..

out of controlBut what about…..?
What do you do when…….?
If that does not work…….?
I have tried everything, anyone know what to do about…….?
Problem today…..?

As I lectured last weekend, I used a line that I have used before; education is the absolute equalizer in our world of diabetes.  The more one knows, the more one is prepared for …….well……just about everything and anything.

The exception to that rule of course is the very same thing we battle daily; diabetes.  Diabetes just does not care what kind of day you are having; but take heart…..it’s not  a personal thing……it’s a disease.  It’s not like it can say, “…..oh today I will cause hell on this person….”, realistically, it cannot do that even though we surely think otherwise at times.

So the question becomes, what does one do; what can one do; when no matter what—–nothing works?  No matter what…..diabetes still gets the upper hand.  There was a discussion circulating lately about ‘brittle diabetes’.  Some say that it is people just not trying hard enough, and others say it is a realistic, absolute, and trouble-some diabetes situation.  Let’s not debate that point………………let’s just say………..no matter what you tried, you are ‘stuck’ in what ever it is that has you stuck.  Do you just ride the storm?  Do you just ask a million people how to get unstuck?  What do, or what can, you do?

The true answer is this; the result/answer may not be immediately forthcoming but what you cannot do is just not confront the situation—-it very well may not ‘just go away’.  Do everything I suggested above.  Ask everyone.  Call doctors.  Call support groups.  Whatever it is that you are going through, it’s rare; VERY RARE; that no one else has gone through the same thing, or something very similar.


If you suffer it alone…..you will suffer it alone.  Ask others to ask others.  Keep asking until someone says, yes I have gone through that; and here is what I learned.  Here is what you should try.  Here is what I suggest.  Because the worst way to deal with something that is unfamiliar to you; is to think that you are the only one who has ever dealt with the situation.  Things old are new again, ask—they are (usually) only new to you.

As weird as a situation may seem; you will be surprised when you learn who else is going through something.  I have a friend of mine with a child with T1 who has what may very well seem (at present) like a unique situation.  She is a very bright and determine woman and I’m confident that, when all is said and done, she will not ‘go it’ alone.  Someone has been there and can help her……I have to believe that.

So when all seems lost.  All seems lonely.  All seems like there is no one else……ask.  Because when you ask two people, who ask two people, who ask two people—-eventually someone will be able to help.  When it is out of control, it is out of control to you……………………but you must find THAT person…….keep asking.

The old joke says that something is always found in the last place you look; I believe; that the help will be out there but you must keep asking………until THAT person comes forward.

Am I wrong?  Let me know who helped you when you thought NO ONE could?  Or are you still going through it……..now is the chance to ask again……so ask away……..

I am a diabetes dad.

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


Diabetes: I’ll do it My Way….and You Do it Yours, Okay?……Uhmmm, No!

my wayI often find it interesting that there are so many discussions that come down to this point; let’s just disagree on how we each handle the diabetes in our own household.
Really?  The reason I state this in this manner is that there is a widening of the gap between what are people’s opinions, and what is sound medical advice.

More and more people are saying things like; “…..if I had listen to my doctor I would be dead right now.”  “My doctor did not have a clue how to handle diabetes and Johnny’s sports activities.”   “Our practice had no idea about insulin pumps, so we made the call.”  IF THAT is the case, go to a new practice.

Here’s the thing; it is starting to scare me that people are reading things online, in many cases, until they find what they want to hear.   And they follow that advice.  Or we are becoming so accustomed to the medical professional ‘getting-it-wrong-their-way”, that sound medical advice is being pushed aside….for nothing more that it MAY HAVE worked for some people……some times….the loudest people.

Now hear me correctly.  Anyone has the right to question anything.

When I was at Hofstra University and we were being taught theatrical stage construction, we were taught that if you were cutting many pieces of the exact same thing; you needed to always use the original piece that you cut…..because if that one piece was off by just an eighth of an inch……at least they all would be the same.  If you measured from one piece, and measured another from the newly-cut piece, and measured from the next newly-cut piece etc. etc. etc. you would be off by many inches by time you finished.

I am seeing medical advice being given and getting further and further away from sound medical advice and said so often that it is starting to sound like it is the way it should be; just because people say it more and more.  If a million people say it….it does NOT MAKE it absolutely the truth.

My point is this.  No matter what people think and say MUST BE WEIGHED heavily with what is sound medical advice from medical professionals.  Need more proof,  ask more medical professionals.  The consensus of advice should be coming from those who are trained in such matters, not from those who are not.

Let’s not get into a ‘what about’ specific situation; you know what I mean.  We can not just make some of this stuff up as we go along.  There are sound practices in place for a reason.  You also MUST ADD INTO THE MIX that what works for one-two-three or more people does not necessarily mean it will work for you or your child.

My fear is that one of these days someone’s going to listen to some advice that does not come from a medical professional, or is not sound advice, and in that instance and in that case, it is the wrong advice for THAT person and the consequences will be dear ones.   Whatever you think, hear, read, or experience……ask your medical team.  There is a reason why there is a team…..and why they are yours.

I am a diabetes dad.

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