17 December 2011

their happy is too loud

I will never stop fighting to believe life is good and that the universe loves us. Even mid-mini-meltdown on my laundry room (okay, our house is small, so more accurately, laundry hallway) floor as I cradle Sookie and her hair glistens with my salty soft falling tears as she holds my iPhone so expertly while she snaps moments of this and my turquoise polka dot socks.

Do you want to know why life is crazy? 27 years ago last Tuesday, my parents were given news that they never wanted to hear. A disease, their daughter, she would not have 9 years on this earth. A relentless disease that affects every cell in the body. A disease that destroys kidneys, bones, eyes, pancreas, liver, muscles, and can eventually rob someone of their precious voice, priceless sight, ability to swallow solid foods...but not will to live. 

But I celebrate. 

I celebrate I've never known what healthy feels like because it has always been this way, so I don't have a frame of comparison to measure up what I am missing. I celebrate what I used to have and what I can do today. I celebrate the people; the people who know how isolated walking this journey can feel. How triumphant absence of vomiting and nausea truly is. The ones who come to surround me, lift me up, who soak up my tears of defeat with their shirt sleeves, but also point out how my tears of joy sparkle in the sun.

I celebrate the 19 years they said would never happen.

"Their happy is too loud."
A line in a scene from a movie that shattered my heart. A little girl is trying to sleep and their neighbors are having a party. She tells her daddy, 'their happy is too loud." I melt. I want a big banner proclaiming this to hang proudly on our front porch.
Yet another line from a Cameron Crowe movie that has become a welcome, all encompassing mantra in my life. Last weekend we went on a much needed date to a sneak preview of 'We Bought A Zoo". (The last time we were really alone happened to be at NIH, and as much fun as that was, sitting around waiting to be a lab rat at a government run hospital is just not high on our list of romantic adventures. Wink.)
So this movie? This movie is about a single dad with a teenage son and a little girl with red curly hair. The mommy was sick, the little girl about 7 years old in the movie. Based on a true story and as hard as I tried, I could not stop thinking about Sookie. I think we cried on each other the entire length of the film."It's all happening" courtesy of Almost Famous was the theme for my Make A Wish weekend meeting Hanson (for the first time; that is the funny thing about make a wishes...one comes true and then you are running into the three blonde brothers multiple times all over the United States. But that is a story for another day.)

Obviously, when my emotions are charged, I tend to gravitate toward elements of art that are way too close in reality to my own. Another case in point? I read Matt Logelin's "Two Kisses For Maddie" a few weeks ago as I climbed out of the dark depths I tumbled into after my traumatic trip back to DC.

I'm sitting in the corner of the kitchen and I make a bold statement; to Roar, to Sook, to the world outside and to the skies above.
"I just want to be with her forever."
Roar's response?
"How do you know you won't be?"


  1. Just live in the present and hope that you continue to beat the odds. Your little girl is so cute. I do understand as I have been there and also beat the odds. But I don't have to deal with illness now. Happy Holidays.

  2. ohmyword. gulp.

    what a beautiful post.
    and a beautiful heart.
    and AHHHH!
    SO glad you found me, so i could find YOU :)


  3. your pictures are precious. have a beautiful day, friend.

  4. You are a strong, beautiful soul.

  5. Listen, the healthiest girl I ever knew -- literally -- fell over one day and never stood up. Her timeline had ended.

    YOURS hasn't. Obviously your work here is not done. Cry those happy tears; hold onto every minute -- but enjoy it too! She's beautiful and so are you!

  6. She is precious as can be! Your blog headline is so touching, it makes me want to learn more about you! Look forward to keeping up with your blog :)

    xo Shane

  7. My eyes just got all kinds of teary. Beautiful post!! Stopping by from The Shine Project!

  8. i cannot wait to see we bought a zoo! it sounds amazing!

  9. Roar answered wisely. You don't know that you wont!

    And even if you don't have as much time as you would like, you still have time. None of us live forever.

    I have a fear of dying and leaving my daughter behind. So I have prepared just in case - letters. Full of advice. and Love. Even when you're relatively healthy, none of us have any guarantees about how long our lives will be. How do we cope? Prepare the best you can. And try not to dwell in worst possible scenarios. And pray. Phillipians 4:6,7.

    But this is aptly posted in on the Shine link up. A situation like this demands courage.

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