The Face that Makes Me want to Move Heaven and Earth and on this Day; a Reminder.

Kaitlyn Face CroppedIn my junior year in High School I was introduced to the theatre.  The show was Godspell.  I came off stage and told my mom that I would be doing this the rest of my life.  I would go on to appear in 3 other different productions in my career. 

I figured it out once, and realized, that I had been in over 200 different productions in my career.  The runs were always different, a few weekends to a few years.  I have had the honor to work with both famous and not; but many mega talented people for sure.

Then came Tony ‘N Tina’s Wedding (TNT as we called it).  A gift.  A huge gift.

TNT was created by a group of kids (at the time) and would go on to become one of the greatest shows in New York History for many, many reasons.  Many of these ‘kids’ were from Hofstra University and they were smart, creative, and bold enough to think they would make this show work and it did.  Being involved with the original cast would turn out to be THE SINGLE biggest reason my professional life would change.  But it would change again, almost as quickly.

Driving into New York City for a Saturday matinée my beeper (for those too young to remember, what people carried before cell phones) went off; and on the screen were three numbers; 9-1-1.  Something was wrong at home.

I finished crossing the Williamsburg Bridge and pulled over to a pohne booth and made the call home.  Jill answered; “I have to take Kaitlyn to the hospital, Tom they think it’s diabetes.”

I had plenty of time to digest everything, as it took two hours to arrive at Stony Brook Hospital.  The show would wait, and eventually so would that entire career. I talked myself into all of the other possibilities. It was probably just a flu, Kaitlyn had been a little sick of late; I’m sure that this doctor could not be saying what was true and surely Kaitlyn does not have what they think, I had resolved all of this by time I pulled into a parking space and ventured into the hospital.

I entered the hospital and down the long corridor I saw Jill was standing outside a doorway.   I saw Kaitlyn’s jacket hanging down from Jill’s hand, and it hit me right then and there.

“She has whatever THIS is. Suck it up Tom.”  Jill and I looked at each other, neither of us could speak.  I walked into the ICU room where they had Kaitlyn.

There’s nothing that would make a man crumble like what I was about to see,  Kaitlyn was in a crib-like bed, machinery, tubes, and personnel all around. She had been poked, prodded, and handled.  I went to her bedside.  Her color was horrible, she could not even cry any more.  I leaned over and pushed her hair out of her eyes.  Her eyes were lit with fear.  I kissed her.

“Hi honey.”

She tried to smile.  She was my little girl and she knew it; even before this day at the age of only two.  She rolled her head as if to show me everything around her and everything she was hooked up to including the I.V. in her arms.  She looked at them and she looked straight at me.  Right into my eyes.  Right into my soul.

“Yes honey.”

That date was September 26th, 1992.  Our life was forever changed.

It has been an incredible 21 year journey.  I have never stated that the start of our journey was any different from others’ journey.  As parents we all have this day burned in our memory.  I will share that in all of the ups and downs of this ride my single-minded focus has always been the same: to find the place we think would take us to the cure in the fastest way possible.

As our journey continued, we also began to realize that the important issue was also to make sure we educated ourselves, and  Kaitlyn, to manage her diabetes with the best possible tools available; or when the time comes, the cure would not matter at all, if she was not as healthy as possible.

Our way, may not necessarily be the path of someone else.  We have learned to respect that fact, and accept the fact that there are many roads and we each must find our own path.  Many do. 

It will always come back to what we have been doing as a family for twenty-one years. It became two-fold in March of 2009 when Rob was diagnosed as well   What happened twenty-one years ago on this date was that we were given a directive by a driven, beautiful, two-year-old  little girl who said but two words; “Daddy Fix”.

Happy Diaversary Kaitlyn; I believe our vision now more than ever.  Our focus is razor sharp on what we believe and nothing can, or will, deter us from our goals or the promise given twenty-one years ago.  I will get my break when you and Rob have yours, not one second before.

We love you.  And you will always be daddy’s little girl.

I am a diabetes dad

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

4 replies on “The Face that Makes Me want to Move Heaven and Earth and on this Day; a Reminder.”

Tom I understand that promise as my 13 year old just begged and cried for the same thing .. To be fixed .. Hopefully one day all our hopes will come true and our lil girls (no matter how old ) will be able to live life free again .. Love and care with you and yours from a family that feels your aches and joys together across the seas from Australia xxoo

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