19

     Growing up in Southern California had some advantages: namely a radio station called The Mighty 690.  Sure it later became a sports station and today is probably mariachi musica todo el tiempo, but back in my day, it was the thing boyhood dreams were made of.  I remember sitting excitedly by my radio with a blank cassette tape in just waiting to record the next catchy tune.  I remember one of my favorites was the song, “19” by Paul Hardcastle.

       I’ll admit to being oblivious about knowing what the song was about, but in my mind, it was cool.  I would roam around the entire house singing, ” Nineteen, nine-ni-nine-nineteen! The average age was nine-nine-nine-nineteen!”  As it turned out, the song was about the Vietnam War, and the average age of our soldiers being just 19 years old.  I was just a kid and I didn’t really think too much about the meaning of the song.  I would just sing it until The Mighty 690 played the next catchy tune.  Then I would roam around the house singing at the top of my lungs, “Like a Virgin, HEY!!!!”

       More recently, 19 (the number, not the song) took on an entirely different meaning for me.  We were still in the hospital after Delaney’s initial leukemia diagnosis trying to figure out what it all meant.  I remember the doctor’s very firmly telling us to stay off things like Wikipedia for information on survival rates, etc. and that they were comfortable putting the survival rate for her diagnosis at almost 95%.  I quickly did the math, and figured that 19 out of 20 kids that had the exact same diagnosis as Delaney would be okay.  But what about the other one…

        It didn’t take long to realize, we were among the lucky ones.  Many of these kids with cancer are much, much worse off.  Unfortunately, some of them have an almost immediate terminal diagnosis attached.  I remember talking to a friend of ours who had a daughter with heart problems.  She was telling me how she got to the point where she stopped wanting to meet other families with children with similar conditions because she knew it was just a matter of time before one of them didn’t make it.  I couldn’t help myself, I began a silent count in my head.  If Delaney was number one, Luca would be number two.  No! Please don’t let anything happen to sweet Luca.  She is so young and sweet!  The next day I met Angelo…number three.  No!  He seems like such a well mannered young man who has such a bright future!  That is a kid that will go far in life.  Not Angelo!  And on it went, and that was still our first week in the hospital.

      Once Delaney got out of the hospital, we were introduced to the social media aspect of it and the number of families and kids with cancer that we met grew exponentially.  I know most of you don’t know me personally, but contrary to what my wife says, I can actually be funny sometimes.  To me social media (ie. Facebook) was a outlet for my quarky sense of humor.  Heck, on the night of my 20th High School Reunion, my night was made not by the question of how I got down to four chins, but by the comment of our old high school quarterback (who I never knew even read any of my posts) announcing that in his opinion, I was the funniest guy on Facebook.  Sure my wedding night and the birth of my four daughters was nice, but that was my proudest moment.  Now, I’ll admit to longing for those days when I would tolerate reading your exciting posts about what kind of dressing you put on your salad, just so I could commit an entire day to responding to posts with either “What smells like mustard?” or “I would rather take a nail gun to my crotch!”  Come to think of it, maybe my wife is right.

       Now my Facebook experience is a lot different to the point that I almost dread it.  For those of you that know me, this is like a crack addict saying, “Nahh… I’m good with just this candy cigarette.”  And with that terrible analogy, my wife scores another one!  Anyway, I still get to see the picture of toast that you posted because you were so proud it was properly cooked, but then I see yet another kid that has cancer.  I really don’t want to see anymore as sometimes I feel like I just can’t take it.  Yet, I won’t allow myself to NOT see them.  I read their bios,  learn what I can, and pray for these other little fighters.  We just got another reminder via Facebook that they aren’t all going to win the fight.  However, we have moved from being just Delaney’s advocate, to just trying to help in any way we can or continue to create awareness for all these kids that are fighting this horrible disease.  I’ve learned that when I take the time to get to know them, it is no longer about stats and numbers but instead very real people.  The reality is that most of them that do lose the battle will do so long before they even come close to turning nineteen, nine-nine-nine-nineteen. 

      Just so I don’t end this post on a Debby Downer note, I’ll leave you with this catchy little tune which if I was smart enough, I guess I would realize is actually kind of Debby Downerish in its own right.  Enjoy!

 

 

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7 thoughts on “19

  1. It’s not the life you live that makes this journey memorable. It’s the life you LIVE. It sucks and it’s terrible and I hate it that kids get sick and die. I can’t imagine what you are going through with your daughter and the other amazing kids you are meeting. If there is a small spot of light, let it be that these babies are great examples of LIVING life to the fullest, as they are able. While their circumstances suck, their lessons should be taken to heart.
    And Stacey is right. You aren’t that funny. 🙂 But to keep you feeling FB compliant, I went to the gym. Burned the toast and fed the dog. Since we are total strangers and I haven’t actually laid eyes on Miss S since high school graduation that pretty much sums up Facebook requirements. 🙂 Thinking of you all, and praying every day.

  2. Tom, You have such a way with words and are always so inspiring! Thank you for mentioning Luca and for keeping her in your thoughts and prayers. I, too, hate the reality that some of these amazing kids we meet and grow to love will not make it. It will NOT happen to ours!!! We think of Delaney often and you are in our daily thoughts and prayers.
    Much love,
    Molly and Luca too

  3. Jason’s right, you are funny and I remember sitting and waiting to tape a song on the Mighty 690 or calling 1-800-522-1069 to request a song. I wish, sometimes, that life was still that simple. Keep the positive attitude. You and your family are inspiring.

  4. After just spending what felt like an eternity yelling at my 5 year old (actually, screaming), and feeling like a bad, no really bad, mum, you have brought me back to reality. As the others have said, you and your family are inspiring. Your journey must be so difficult, but please know we are all listening and praying for Delaney. She is an incredible little girl and I feel blessed to ‘know’ you all via your blog. Thank you and all the best. Off to hug my little girl.

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