Tag: Beyond Type 1

Ever Get Annoyed by the Question…….Whose Fault is it that T1D Came to Your House?

Posted on | by tomkarlya | Leave a Comment on Ever Get Annoyed by the Question…….Whose Fault is it that T1D Came to Your House?

I’m so, so sorry that I gave you diabetes.  I thought it was not me but I paid to have that DNA testing service having to do with ancestry run MY DNA and it game back that the lineage of T1D  on my side of the family goes back to the days when a guy name Christopher Columbus sailed a few ships and landed somewhere around here.

The testing took some of my DNA (I will keep from where it came to just me, its pretty private) and I paid $3275 and it came back——732 relatives had T1D…..so it’s all my fault.

Sounds a tad unrealistic, don’t you think?

And yet I constantly hear from people who share the guilt of thinking they are at fault or even MUCH MUCH WORSE, some dim-wit relative ‘from the other side’  finds a morsel of information and all of a sudden they are the new authority on who ‘is to blame’ for the mess you are now in with T1D now in your residence.

Absolute POPPYCOCK.

Even if……EVEN IF……you could be absolutely certain (which you cannot) which was the gene pool that got you to where you are………what difference would it make.  You would have to then go out and find out what triggered it; of equal importance.  Good luck with that also.

Blame.

Pointing figures.

Hidden figures.

Who cares.  But what if……what if…….what if……..what if……what if……
Tell them that DiabetesDad said to “SHUT UP”.
Then look at them and share that you are not so sure where the T1D came from but (stare intently now) you sure know EXACTLY where the stupid gene comes from.

It’s okay because I can promise you that we will have a cure for T1D long before we find a cure for stupid.

Having a little fun today to teach this: It does not matter what you discuss on HOW something happened; it matters what you are going to do with it now that it is here.  And when someone has an opinion, tell them to put that energy to good use and do something THAT DOES MAKE sense like running a fundraiser for education, help, and/or a cure.  That would be better than shooting their mouth off on something they know little, or nothing, about.

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

As Long as They’re Healthy………Are They?

Posted on | by tomkarlya | Leave a Comment on As Long as They’re Healthy………Are They?

How many times have we heard the phrase, “Well at least they’re healthy”?  Does the answer just roll out of your mouth or does it stick to the roof of your mouth before the words pour out?

To be completely honest with you, I have NEVER been able to answer this statement without it rolling around in my brain for some time after I hear it, and worse when I say it regarding my kids.  I mean, outside the diabetes?  With diabetes?  Are they ‘healthy’?

What is healthy?  How can one say, “….. well outside my kids’ diabetes, yeah they’re healthy” is as awkward as it sounds.  Should we acknowledge the inclusion; or the exclusion of a disease that so many count as horrendous?  So many more move on as if it doesn’t even exist.  Remember the old sick joke, “Outside of that Mrs. Lincoln, did you enjoy the show?”

I’m not trying to be flip, t’s just that I do not know how to separate my children’s attachment to this disease answering a question that for the most part is asked as a rhetoric, ‘How are you?”

How do the people who actually live with diabetes feel about this question.  When people ask you, “How are you?’  Do you just say, “Fine”.  But more than what you say out loud, how do you feel inside when asked that question?  I would love to know.

I’ve had asthma for years.  I cannot go anywhere without my inhaler.  But when someone asks my, I never give it a second thought; “I feel fine”.  There is not a ‘but’ or ‘if’; if I feel fine I say I never giving asthma the time of day—-not even a thought.

Is diabetes thought of in the same way?

It makes the education of diabetes tough when most look so good living with it and I have written about his before.  As I stated, I do not have an answer for this, on this, or about this?  If you have diabetes………………….are/can you be considered; healthy?
Thoughts?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

My New Hero……..Is My “Maine Man”!

Posted on | by tomkarlya | Leave a Comment on My New Hero……..Is My “Maine Man”!

One of the greatest thing about the journey I am on, is the people I get to meet.  Not too long ago, I was asked to speak in Maine at the P-Pods annual event.  What a wonderful crowd.  After I spoke, I joined my friend Aaron Kowalski (who also spoke) from JDRF on stage for questions and answers.

Almost immediately a young man raised his hand, many call him Marky.  Marky is a young man who loves the New England Patriots and superheroes.  Imagine his delight when he had the opportunity to have dinner with Spider-Man & Captain America at Universal studies.  I called upon the 9 1/2 old and he asked; “I would like to write an article for your blog.  I read it and like it.  May I?”

I looked right at him and he was 100% serious.  I stated, “I have never let anyone in as a guest blogger before………”

Marky stood his ground looking at me and he did not move……..As I saw the determination on his face I thought to myself……”that changes now”.  Okay Marky—-you will be the first guest blogger I have ever allowed space; so without further adieu, I present the article from my new hero……..who needs no cape.

On my first day of fourth grade, I was excited that I was going to learn new things and that my classroom was finally upstairs!

I was a little worried too.

I had lots of new classmates, a new teacher, and a new ed tech. I know lots about Type 1 Diabetes, but was worried THEY might not. What if they didn’t know about high blood sugars, low blood sugars, and why I have extra snacks? What if they thought my pump was a gameboy? My phone was a regular phone, and who knows what they might think my meter was.

When I entered the classroom, after morning recess, I got to pick my seat. I wasn’t thinking about choosing a seat next to my best friend. I was thinking about choosing a seat next to my ‘ed tech’; in case I had an emergency. I hate it when my alarms go off in class and if I sit near my ‘ed tech’, I can make my alarms go bye-bye faster!

I ended up choosing a seat next to a new student. I soon realized she got distracted by my alarms and when I checked my blood sugar. I sometimes forget not everyone understands T1D. My teacher let me give a T1D 101 lesson. Unfortunately, right before my lesson I pulled my pump site out and had to leave early. We rescheduled for the week after. After my lesson we also had a Q & A session. It is important that my friends know about T1D so they can help me in an emergency.

T1D is a lot of work but, I have lots of people who can help me.

—–Marky, from Maine.

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

What Surpasses Tears of Joy? Perhaps, Smiles Upon Smiles of Joy!

Posted on | by tomkarlya | Leave a Comment on What Surpasses Tears of Joy? Perhaps, Smiles Upon Smiles of Joy!

I have never been one to force emotion…..if it is how I feel at a particular moment, it becomes whatever it becomes.  We all live in the ups and downs with emotion starting the day we heard the words, “your child has, what is commonly called, type one diabetes.”

Finger pricks, injections, 3 am blood checks, and the feeling that you are utterly alone is enough emotion for a life time.  So many, and I MEAN MANY, of my friends co-warriors in this fight had bets when, during my daughter’s wedding day, I would completely lose it.  Seeing her for the first time, walking her down the aisle, and surely by the ‘daddy-daughter’ dance you were going to have to scrape me off the floor…..right?

Not exactly.

You see I actually cannot remember the last time that I had the feeling I had like I did the day Kaitlyn became Mrs. Andre Burnett.  To be THAT happy was the most wondrous feeling I have had in a long, long time. Not one tear, anywhere, just joy.  The entire planning of the wedding was a delight and the actual day itself was heaven on earth.

There are many aspects to the planning of a wedding.  Much different for a daughter than a son.  Engagement parties, showers, parties, wedding-rehearsal dinner and then the big day.  There was just so much love.  Not only within our families but from our extended friends and family we have met while on this incredible journey, so many were extending good wishes and great love…..we thank all of you and felt it from all of you.

SO if you have a child with diabetes, I want to share that one of the most joyous days of my life occurred after diagnosis.  In the spirit of present day; Olympic Mega-star, Multi-Medal Winning Swimmer, Gary Hall shares freely that he won more awards after diagnosis than before.  I know that feeling now more than ever.

The take-away is that even after diagnosis, the best days in you life may very well be ahead of you.  Hold onto that thought—-you will need it.  And sometimes those incredible smiles…….are worth their weight in gold.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

What Does a Dad say to his Daughter on her Wedding Week?

Posted on | by tomkarlya | Leave a Comment on What Does a Dad say to his Daughter on her Wedding Week?

Dear Kaitlyn,
Daddy’s little girl, my little girl.
When I sat down to write this, I was going to send it to just you.  Something this personal is meant for a father and a daughter.  But you and I have never just lived between you, mommy, your brothers, and I; have we?  Our family, in our diabetes journey anyway, well we have lived in a bit of a bubble haven’t we?  And it’s that very idea that gave me the start I needed for this letter.

Thank you.

In all the years I have written, and all the things I have shared, you NEVER ONCE came to me and said, “Dad, you should not have shared, that.”  Any time we discussed it, your answer has always been pretty much been the same, “If others can learn, share it.”  From tears, to tribulations, to pain, to laughter, to silliness, to private moments, you let me tell our story.  What the public does not know is that we did not ‘just do’, we asked.  But that did not change the fact that you said, ‘go for it’; a million times.

Thank you.

For all the times I came to you and said this mom and this child could use a phone a call.  I always tried not to find out the details as sometimes a young lady needs to speak to another about their diabetes, so information was usually scarce but your desire to help never was.  “Give me the number dad, I’ll call”.  Caring and sharing with kids at diabetes camps, at CWD, at support groups, individual, and elsewhere has always been inspirational. You compassion ‘way back when’ made it pretty clear you would be in a profession to help others.  As a nurse, you made that very clear, very early.

Thank you.

For sharing Andre and allowing he and us to get to know each other on his terms.  Not what you want us to know him as, or even what we wanted to know him as—-this is a very difficult thing for parents sometimes.  He is a wonderful man and I could not be passing my daughter’s hand off to better suitor.  And more than that, as of next Sunday he will become another son to me…….he pretty much is already.  He did that on how he treated you, how he loves you…….on his terms.  We welcome him and his wonderful family and it is GREAT that they like to party too.  Your journey together will provide much of that for all of us I’m sure.  My prayers will continue asking God for his safety  every night and day as he places a gun on his hip and a shield on his chest to protect those he does not know….this is a special man.

Thank you.

For being you.  No matter what has happened in our lives, you stayed true to you.  Your love for others but specifically for this family has meant the world to all of us.  Your love for your two brothers–what you have done for them over the years always ‘watching out for them’ has been incredibly comforting to mom and I…..and them; your humor, OH YOUR WONDERFUL HUMOR–from Turkey songs at Thanksgiving to your creativeness in everything you touched, to going to the deli to buy a pickle because it was ‘a free food’ while all your friends filled up on sweets, to silly songs, stuffed bears, and so much more makes you such a wonderful person.  You’re laughter and ‘no drama’ is infectious.  You rarely complained, if ever.  You took every obstacle and challenge and showed us how to make it a teachable/learning moment.  You taught me the most important lesson I have ever learned in this diabetes journey when you answered a news reporter so matter-of-factually, “I have diabetes, diabetes IS NOT who I am”.  You said it directly and clearly and it’s something anyone dealing with this disease either personally or with a loved one MUST HEAR in their life…..and often.

You have taught me more about this disease than any book, any doctor, any professional ever could.  Together, and much through this column, many learned from you from stories and by your example.

On the week a daughter may be getting married a man might tell his daughter that he is done teacher her all about life and she will now walk with the man of her dreams.  But Sweetie, when it comes to diabetes, you have been the teacher since the day you were diagnosed, and I have feeling it will not stop anytime soon with me, nor those you meet.  And the world is a much better place for it, because of the way you have handled your diabetes, your life, and this journey.  THAT is enough to humble any man…………………even a DiabetesDad.
Congratulations on your wedding day, and I love you to the moon and back.
KKNN
Love Dad

When ‘My’ Jesus Joined the Diabetes Battle……or Did I Join His?

Posted on | by tomkarlya | 1 Comment on When ‘My’ Jesus Joined the Diabetes Battle……or Did I Join His?

Quite a few people reached out to me this week to ask me about my comment I posted about Victor Garber last week.  I posted a video of Mr. Garber and his public service announcement about the missed diagnosis of T1D, I will post it again at the end of this story so you can see it too.  Many wanted to know just how he influenced my life.

A long, long, time ago, I went to the movies and saw Godspell.  When it was over, I could not speak.  I fell in love with all of them, every single member of the cast.  I was so moved by the man with the HUGE hair who played the role of Jesus.  His name was Victor Garber.  Years later I would find out it was his real hair…..of course it was, there was nothing fake about him.  But I digress.

I played the Godspell album so many times when I was 16, I wore it down and had to buy another one.  I knew every word and every nuance of the movie.  I read everything I could about it.  My junior year in high school there was a post about auditions for a school production of the King and I; it never even occurred to me to audition for the ‘main musical’.  But right next to the notice was a smaller notice, Sister Patricia Crisci would be holding auditions for a production of Godspell.  My dream of one day singing “All for the Best” with Victor Garber would be one step closer, if I could only be cast in the show.  Victor Garber was my Jesus.  One day we would work together.  If that was TOO BIG a dream, perhaps I would just experience the magic I felt from the movie would have to do.

Really?  Godspell!

Just a bell did not go off in my head, an entire bell-ding-dong-orchestra went off…..THIS was for me.  In the school production the roles of Jesus, John the Baptist, and the ‘Turn Back O Man’ actress were cast already and the rest of the cast would be doubled up and one cast would perform on Friday, and one on Saturday.

I just wanted ‘in’.  I had to get to get in.  I worked for days on my audition.

I was cast as the silly one who does the imitations, cracks the great jokes and sings “We Beseech Thee”.  I was in.  I loved every single minute of it.  The cast was incredibly close and we were together almost every minute.  There was just no way that I could not fall for the girl who sang “Day by Day”, and Karen wore my high school ring all through Junior Year of High School.

If one could ever touch magic—–this was it.  The make-up crew, the costume crew, the musicians, and us as cast…..we worked on the show for months and gave the Broadway production a run for their money (not really——but we thought so).  We were just THAT close and the show was a huge hit with the school.   In my eyes this all began from a musical starring a tall skinny man with huge hair, who had the purest of hearts, the kindest of eyes, and the voice of an angel.

On the night of my performance I came off the stage and said to my mom, “I will do this for the rest of my life”. The magic of Godspell was in my heart and it would remain.

I had to stay at this thing called acting….and I did for many, many years.   My acting career would take me back again and again and again to the first show I was ever in, Godspell.  It would also be my first ‘professional’ show (first paying job) and my first Summer Stock show.  Yes, Godspell would come to mean more to me in my life than any other show from the time I first saw the movie and Victor Garber was singing in a Times Square Billboard, to the four more times it would touch my heart and soul in live productions over my career.

Yes, I stayed working as hard as I could as an actor and successes were coming in; until my heart would be touched again.  When I was leaning over the bed in an I.C.U. at Stony Brook Hospital and promised a two-year old little girl that we would do all we could to find a cure; and to change this world of diabetes, the acting career would eventually be put on a back burner and a new career became more important.   And in that new career I learned that Mr. Garber also had type one diabetes (since age 12).

I have walked this earth, of late, shouting from the mountain tops how vital the seriousness of the missed diagnosis of T1D is, and sharing with ANYONE who will listen.   When my friends at Beyond Type 1 sent over the new and recent video of Mr. Garber discussing the warning signs of T1D my heart leaped out of my chest (click the link to see the PSA).  I cried when I saw it.  A circle in my heart had come to completion.

I may never, ever, get the opportunity to sing with my childhood idle, but being in the same battle of diabetes with him….well…..it’s……...All for the Best. (Click this link to see Mr. Garber in Godspell singing All for the Best—-without me  🙂 …….SIGH—Some day!)
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.