Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

I would have sang out your name in those old high school halls…you tell that to Gail, if she calls.

I think it’s finally beginning to hit me, almost 2 months later, that I don’t have Dec anymore. Probably because for the first month and a half he was always here if I needed him, right there in Queens prepared to take our daughter whenever I needed and fulfill his once-weekly obligation to see her on the weekend, and take her to her appointments once a week, and now he’s not here anymore. He’s 2500 miles away living his life and I’m 2500 miles away trying to pick up the pieces of ours.

And it’s hard, you know. It’s hard. I didn’t expect it to be so hard and I don’t know how to cope with it. With appointments upon appointments and work and bills and the always-present possibility that Sarah could, at any point, relapse. With the ins and outs and intricacies of parenthood, even with Down Syndrome and cancer removed from the equation.

I want him here with me. I want him here with us. We were supposed to be a family. I’ll make it, somehow, I know I will. I’ll make it and Sarah will make it, but the idea of someday “making it” doesn’t exactly make up for the fact that I’m drowning under a pile of responsibilities and uncertainties and things that are too hard for me to manage in the now. I most certainly can see the forest for the trees, the maze for the corn…but I can’t seem to find my way out of it.


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2 thoughts on “I would have sang out your name in those old high school halls…you tell that to Gail, if she calls.

  1. So, I found your blog while browsing through Tags and i just spent a good amount of time reading every entry…like EVERY entry. I’m not a creeper. My fiancee has cancer thus why i browse through Cancer tags. But your situation really spoke to me. My heart yearns for your daughter. I’ve been applying to jobs in hospitals and cancer centers with particular interest with working with children. It’s one thing for an adult to have an illness… but a child… I admire you very much for being strong and a great parent to your Sarah. I wish you two the best.

    P.s. I love to write too.. you wrote several posts about wanting to write and kicking the dream to the corner and feelings of not being good enough. I’m in the same boat. With my personal blog( not this one) i started writing about my fiancee and his cancer journey… then stopped writing. I started this new blog and its really helping me get in the writing spirit again..blogging helps polish your skills and discipline.. helps get your mind and creativity rolling. Be cynical about- no one makes it popular over night. But, what do you go to lose? Post something on amazon try to market it and sell it… and see where it goes from . If anything just write for yourself. Keep a paper journal. Write about all the things you dont want to say aloud, make public. Just get it all out. It really is therapeutic and helpful. Be honest with yourself.

    My condolences to you about about your sister.

    And Dec.

    I cant imagine and I don’t know what its like. But, if you need a comforting word, I’m more than happy to read what you write and offer a kind word ( or a smart remark if that better fits the situation).

    Best Wishes. I hope Sarah is well!


  2. I’ve seen you for a long while on the DT and I just wanted you to know that you’re strength for Sarah is amazing. From outward appearances, you’re doing an awesome job. I am sorry things aren’t working out with Dec. Does he not know what an amazing family he’s missing out on?!

    You and Sarah are in my thoughts.
    ❤ Jenn (Z0esm0mma)

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