diabetes inspiration. marriage

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

Posted on February 24, 2018 | by tomkarlya | Leave a Comment

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 February 11, 2018 | by tomkarlya | Leave a Comment

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 February 3, 2018 | by tomkarlya | 1 Comment

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’.

Our Baby Newly Diagnosed…….What Next?

Posted on January 25, 2018 | by tomkarlya | 1 Comment

Do you question your child’s future?

In 1992 when Kaitlyn was diagnosed, insulin pumps were just coming around to commercial use. At that time, the management tools were better than they were years ago, but of course not as good as they are today. When Kaitlyn was diagnosed, we were devastated. We learned many things in the early years but probably the biggest and hardest lesson was that diabetes is not our disease. It belongs to Kaitlyn.

Granted, it impacted everything but we learned the faster Kaitlyn ‘took on’ this disease the faster she would understand it and the more she had a chance at controlling her own future. To be clear, Kaitlyn surely had times when she had enough, when she was depressed, when diabetes started to edge ahead and think it might gain the upper hand. By giving it back to her, she learned to manage this monster at every different stage. It was IN her life, it did not OWN her life.

I best understood this when she was being interview for a news show when she was nine and responded to the reporter, “I have diabetes, diabetes is not who I am.”

Amen. Girl Defiant!

It was at that moment I knew we were on the right track. Going to support group meetings, having her involved with decisions (even at a young age), educating her the best way we could as we learned ourselves; all contributed to her feeling confident that there was not a thing she could not do. NOTHING.

Life was hers for the grabbing. Dance school, sports, school activities, and everything and anything was on the table for her to try. We gave her the choices to not only be involved, but also to accept the challenge of this disease; to know that a glycemic reaction was occurring and to tell us/a coach/a teacher. She needed to do things so diabetes was in managed and she could not be shy. She owned the management. Unless it was a severe glycemic reaction, she stayed in the nurses office until she felt better. We did not run to the school every time she went high or low. She needed to know we would not coming running every high, and/or every low. She saw her way through each episode.

In the earlier days, we were right by, but she did not know it because we wanted her, HER, to understand exactly what was happening. When we would go out when we first started with a babysitter, we would get in the car and just park down the block, just so she was used to us leaving. Each time we exited, it would be longer and longer until she knew ‘she had this’ diabetes thing,

We tried to minimize the fear by adding understanding. We minimized fear. Fear is the unknown, the more one knows, the better they will be. Mistakes were to be corrected and management tools were gauges, not report cards. And we were not afraid to make sure her medical team understood this as well. With the management tools in existence now, you can almost follow them every minute. Now more than ever, you need to get them to take charge. If you are following them like a drone, the rebellion at some point is going to be huge.

CGM. Don’t even let your T1D child even know you have an additional device monitoring them. The extra device should allow your child to do more on their own, because now you can make sure they are okay. You are the back up…..NOT The ones to do everything. Please trust me on this. Parents are doing more than they ever have before and as long as you are willing, your kids will let you. But to what end. Teach THEM to manage their diabetes. Don’t fall for that adage, “Well I’m taking care of it now because they are going to have to take care of it the rest of their life.” Would you carry them now because they will have to walk the rest of their life? Of course not. It’s exciting to watch them learn and be on their own; and with diabetes it’s no different and THEY WILL BE STRONGER THE EARLIER YOU START

The confidence they will gain is immeasurable. Kaitlyn was an elected class officer, in the prom court, and the homecoming court. She excelled in everything and I whole heartily believe it was because she learned to manage this disease during a time there were half the management tools around as there are today.

It was a long time ago since we started and in three weeks I’m walking her down the aisle and placing her hand in another man’s to have and to hold. That confident young lady has been ready for a long time and it started when she was six and she gave herself her first shot. It grew from there and we stood back as much as we could, helped when were needed, and allowed her stand when ready. Sure we were there. But as she grew and she wanted to do more and more, we let her.

It was so exciting.

Be there to pick up your child when needed…….don’t carry them the whole journey. They will run one hell of a race, but only if you allow them to walk first, on their own.
Remember that, sit back, and be amazed what they…….will teach you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

A Mother’s Love……a Daughter’s Dream…….an Unbreakable Bond.

Posted on January 16, 2018 | by tomkarlya | 8 Comments

I have stated millions of times that my children could not have been luckier than to have the mother that God granted them. When I opened this picture, tears flowed down my face.

Kaitlyn’s Bridal Shower was this weekend and those two smiling faces would make any man’s heart overflow. Over the next few weeks leading up to the wedding, I have a few things I would like to say and I hope you will indulge me a little, and more than that; I hope I leave you with a few things as well.

Jill was never ‘a friend’ to our kids…….although sometimes she would seem like that, and other times she would not seem like that. What she was, and is, is the most incredible ‘mom’ they could ever have. In Kaitlyn’s upbringing, Jill set the bar on what we would attempt to do as a family in this world of diabetes. Her fierce appetite for knowledge is the single reason Kaitlyn and Rob are doing as well as two parents could ever hope (although we always hope they can do better, wink-wink-parents–right?).

And outside of Diabetes, TJ, Kaitlyn, and Rob had the compass of life that Jill lived by; and they are lucky indeed.

When it came to diabetes, I may have been the one ‘out there’ (and she was when needed) but it was Jill’s resilience in not only understanding this disease, but making it understandable for one child starting at age 2 who had it, and one at age 5 who did not, and then a little later a thirteen year old diagnosed because that’s how life goes some times.

The dynamics of three children and a husband and wife as a family….well will stay with us because everyone has life and it impacts so many in so many different ways and what is important to know is……………………….here we are.

What is important to know is that we did not just get from there to here on a wing and a prayer; although prayer was surely a big part. We prayed for the ability to learn and the direction to go so our children would not die (there I said it). Quite frankly, there’s no way to soften that thought–it was our fear and probably always will be. Probably yours too. But that fear…….feel it. Really feel it because it is THAT fear that is your first lesson in diabetes. The lesson—-own it; because it will do everything to own you.

But we learned to harness that fear with the reigns of education so we could ride this out with us in as much control as possible. We learned that we had to do EVERYTHING we could because the biggest mistake in diabetes is thinking that you are done learning….and as parents, we never are done. Many times I mentioned how with a 5-year-old and a two-year old, the house was always clean, the kids were always well taken care of, and yet, by time I came home, Jill was asleep with diabetes articles, and magazines, all around her on the bed. She did not just want to know diabetes; SHE HAD TO UNDERSTAND IT COMPLETELY—-it’s the only way to beat your enemy.

We would fail a thousand times and yet;………….try to do it better the next day.

By her desk I would see notes from the newly diagnosed family she found the time to speak to, or write the letters for fund-raising, in addition to everything else she did. And of course, I would move the magazines and see the mascara stained pillows of tears from a mother who only wanted her baby to not be ruled by diabetes. Oh on many-a-night I saw those tears on a pillow.

Our daughter is just a month away from marrying the Prince Charming she dreamed about since she was a little girl. And truth be known, he’s a pretty special man. Take a look at the picture again. I can tell you that the bond of THAT woman and THAT Bride-to-be is absolutely unbreakable. She guided her, and absolutely LOVED her into the mold of the woman and bride she has become.

So many moms wonder what ‘if’; when their child is diagnosed………..look at the picture above moms, the answer is yes.

No, we did not ‘just get here’, we got here through a lot of love and a lot of prayer. And she grew from age 2 to today overnight—-just 27 years in the making. May you find your way as well, and may God Bless you on that journey.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.