Tuesday, March 20, 2012


As Owen's birthday approaches, I prepare to indulge myself in the annual emotional clusterfuck that the day, and following weeks, always bring.

I stumbled upon the Remebered prompt today while sitting in Panera killing Bea's preschool hours.

The prompt was Hope.

Before I knew it?

This happened.


His birth had rendered us homeless, jobless, childless. Helpless  loved ones made valiant efforts at comfort;

"He'll be OK."

In a quiet corner of my mind, where I lay curled up and quivering I screamed back;
"NO! He most certainly will NOT be OK."

I understood what was being offered. And refused to accept it.  It was a lie.

His surgeon, offered only truth;

Bleeding on the brain, seizures, kidney failure, heart failure, respiratory failure.

He wouldn't be leaving the hospital. That was the truth I believed.

I steeled myself.  Turned to stone. Waited.

Since the day he was born,  I'd slept with the phone clutched in my fist. When it rang at 5am, I knew.  It was time.

A hug from my sister in law as we left for the hospital, she knew;

"I'm so sorry."

"Me too."

Eerily calm on the half hour ride in.  Relief that it was going to be over soon.

The ICU that had become our home had been transformed into a battle ground;

Doctors and nurses and all manner of support staff buzzing around, turning our little cubicle into a makeshift OR.

Yes. We'll take one last look at him.

Al sitting on my left as the surgeon came into the conference room and sat facing us;

"He's going where no baby has gone before."  A second round of ECMO is rarely attempted, rarely survived.

"The transplant team is waiting by the phone."  Should Owen need new lungs.

"I've never saved a CDH baby with a lung transplant."  These babies don't live long enough to receive them.

"No matter what happens, we are learning things from your son that will help other CDH babies."

Specific instructions were given when the expected did happen.

Because if out of the ruins of our baby, some piece could be salvaged to live on in another child?

That was my only hope for survival.


  1. I know.

    I know.

    Just the other day, I was blind sided, put to red faced hot burning face shame, at how easily I've forgotten about my Xavier...and how we made it.

    He is now 15, and I had forgotten the days in theNICU...praying, ready to grab him out of the incubator and hold him tightly to me while we both jumped out the 7th floor window.

    Because I panicked at the thought of being told I had to live without him.

  2. The line "Because if out of the ruins of our baby, some piece could be salvaged to live on in another child?" brings tears to my eyes because I remember telling a few family members that if Joey didn't make it I wanted him to survive in someone else. Tears....makes me cry.

    He'll be five soon and such a tough little warrior.

  3. I started here, and clicked through to other stories of Owen, and now I'm back again to tell you that this little boy and your story have moved me to tears (with a few weepy giggles). Hope is a brutal and powerful thing.

  4. Ack. Mailing birthday package soon. Maybe even today.


  5. This:
    Relief that it was going to be over soon.

    in those little letters, hiding it. It's so powerful, and it shows the gamut of emotions running through this post (and your situation at the time.)

  6. Before my kids, I worked as a pediatric OR nurse specializing in hearts. I don't typically share that as it doesn't usually come into the conversation. I didn't know how the parents survived going through what they did.

    Now I know--by a thin, thin tendril of hope.

  7. I bawl at pretty much every episode of Grey's Anatomy/Private Practice/what have you that involved mothers and babies or mothers and children and so therefore it should come as no surprise that all of your heart-wrenching beauty-filled stories about your son and daughter bring me to tears as well. I am so happy that you have Owen and Bea by your side.

  8. whoa.

    good fucking writing, K.

    i'm in pieces now.

    and my post pales in comparison. i haven't even linked it up or finished it yet. i thought about writing about our infertility, failed IVFs, etc. and just didn't want to go there, esp. w/ my depression lately. and now feeling like my post is totally inadeqaute. which it might be. but in case it's just my depression talking, i'll still eventually link it up.

    this is impressive and ragged and wrenching and i can't imagine having to go through all this.

    it's a beautiful piece. well done.


  9. You at your best, this post. So glad your Owen was the exception to the expected tragic outcome. Whew. I just realized I as holding my breath while reading and commenting. Powerful post. Such complex emotions rendered so clearly.

  10. His story, the miracle of him, always leaves be breathless. Thank you for sharing.

  11. This was gut wrenching and so beautifully written. I haven't been here lately and now I'm remembering why I used to stop by on a daily basis.

  12. I am in awe of you!! Such an emotional post. You had me in tears...

  13. Jesus. Your strength is inspiring.

  14. This post... just... wow. I can't imagine the emotions, the pain, tearing you apart. Survivors. That's what you are.

  15. You write so very well about such hard things. I always read, but I don't comment often - because I can only say "wow" so many times. My words seem empty, after yours...

  16. wow. so hard and important to always remember.... the beauty the pain.

  17. All I can think is this:

    You have gone where no mother should have to go...

    But he's here. Hell yeah. He's here.

  18. I have chills.
    I love your writing.
    I want to be your neighbor. (in a non-stalkerish way, I won't spy on you from my window. Much.)


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