Part I

Part II

Part III

Part IV

Part V

Part VI

The Morning Of The Surgery, I woke up more calm than I’d been since the whole nightmare started, not even a month before. We’d all aged so much in that month. It was like all my worrying had already peaked and I was left to deal with my more standard and rational self (shut up. It’s my blog and I’ll call myself rational if I want to).

It was a damn good thing because last night as I gave my daughter a pep talk reminding her that she had to be a strong baby girl and kick this surgery’s ass I broke down. And I mean I BROKE THE FUCK DOWN.

I was convinced that The Bad Outcomes that Neuro #2 had mentioned would be the only way this could end. I’d always figured I’d have a houseful of Sausages, never a mother to a daughter. Never thought I’d be so lucky. So, no one could convince me that I was not driving my daughter to her demise. That kind of responsibility was unlike anything I’d ever felt before, and it weighed down on me like a stone noose around my neck.

But I was strangely calm that morning, as the sun rose and the valium went down the hatch, the sky was my favorite color: sky blue pink. The color I always used to draw when I was a kid, always the backdrop to the stories of my pictures, so it seemed especially appropriate that this was the backdrop to this story; the way things would end. One way or another, this was the end of days.

Uncharacteristically, Amelia sat in her car seat without crying, which was especially amazing since she’d been denied food or water for hours before, and she was still, technically, a newborn. Dave and I chatted nervously about this, that and nothing at all. I remember having a debate about the psychologist with the dog, and what strikes me most about remembering this is that neither of us could remember the name of that particular shrink (answer, later determined to be Pavlov). I guess neither of us was as coherent as we’d thought as I cannot tell you how many different psych classes I suffered through over the years.

Calmly, we handed the car off to the valet and went upstairs to the surgery center, where we were to check-in, straight past the NICU doors where we’d been happily sprung from what felt like years before. I choked up as I had to tell the kindly old woman behind the desk the name of my daughter–once again, they looked at me as though I must be Amelia Harks, which I would have happily pretended to be so that I could take her place–but we managed to check in without me running off with my daughter.

After taking a seat on the chairs, Dave firmly gripping his daughter, as I couldn’t go too close considering I smelled like a Milk Factory. To taunt her with it when she couldn’t eat seemed unnecessarily cruel, especially for someone who was about to have her brain cut open. Only a couple minutes did our butt cheeks graze those chairs before we were called back to the surgical prep area.

The nurse–the incredibly kind nurse–took wonderful care of us, but when we had to take her out of the outfit she’d been carefully stuffed into and put into this gown designed for probably a 4 year old, it once again dawned on me how truly fucked up this was. Our baby was having brain surgery. Cut it, dice it, filet it on up with clarified butter, it’s all the same freaky statement.

But there we sat in her surgical suite, Dave bouncing his daughter to keep her happy, while I signed her life away with my real name. I’d imagined this scenario a million times before, and always I used an alias, before I busted the baby out and ran away with her, hitchhiking to somewhere, anywhere else. I did it, I signed her name like an adult, I met with the surgical assistant, the anesthetist, the surgical nurse and finally the neurosurgeon. I didn’t, much to your shock, bite any of them like a feral dog, I didn’t scream “Get your whore hands off my fucking daughter,” no, I was nearly respectable. I mean, it’s still ME, but I was almost…normal.

encephalocele surgery

Forgive the shitty quality of this photo: it was taken with my iPhone.

When they came to take her away from us, I didn’t cry. After crying buckets of daily tears, I didn’t cry. The tears were gone. Useless now. It was do or die and the ball was rolling. Pick your dumb metaphor, it was in God’s hands. Well, God and the neurosurgeon.

I had my Internets who got my back, I was on prayer lists, and it was show time. It’s so stupid when I type it out here, it sounds so trite, I know, but it’s true; you guys held me up, you dusted me off, wiped my tears, helped me put on my big girl panties, and you held my daughter in your thoughts and your arms that day. Words can never thank you enough for this. I mean, I can TRY, but trying to quantify how I felt that day would be kind of like trying to tell you that the Sistine Chapel was “pretty.” Yes, okay, and….?

Dave and I made our way carefully back to where we’d been sitting, prepared for the 6-8 hour surgery (if memory serves me correctly) they’d predicted, and instructed not to leave the area. Especially together.

I popped another Valium (Dear God, thank you for Valium) and sat down and dug out my iPhone. Just as I was checking my email and reveling in how many wonderful people I’d been lucky enough to meet along the way, my father ambled in, NY Times under his arm.

I’d spent the weeks before Amelia’s surgery begging people to come and sit with us. Strength in numbers.

But no one could. Or, no one would. Well, aside from my father and from my friend Nathan.

My dad showed first, looking remarkably calm (I’d venture a guess that he was riding his own Valium train here, but this is an unsubstantiated claim) and Dave took the opportunity to run downstairs and get some breakfast for us. I am as shocked as you to report that we both were hungry and able to eat.

Just as Dave returned with a tray full of breakfast goodies, the surgical tech came out to us, stopping my heart for a nanosecond. She had a bag with a biohazard label on it and she handed it to me, explaining that Amelia had just gotten her first haircut and she knew that I’d probably want to save the hair for her baby book.

(Mental note: buy baby book)

I begged her to tell me that my baby was all right, and she did, she assured me that Amelia was just fine. Then she made her way back into the bowels of the OR, leaving me there, holding a baggie of my daughter’s hair. It was so fucking surreal.

Always one to deflect the gravity of the situation with humor, my father informed us that it was just about time now, as he’d finished his cup of coffee, for him to go back and scrub in. He informed us that over the past couple weeks, he’d gotten his MD. From the Internet.

So now, he was going to go and direct the neurosurgeon on how best to do his job. Picturing my father, wandering back to the OR to direct the cocky neurosurgeon on how to do his job was too much for me, and I burst out laughing.

Nathan showed up then, and I took the opportunity to go for a walk with him, leaving The Daver with my dad and the 50 million bags of crap we’d brought for the 3-4 day PICU stay. We wandered down to the cafe to get a cup of coffee and then decided to check out the gift shop, where I bought my daughter her first piece of jewelry. A heart necklace, covered in tiny crystals. I thought about how I was going to tell her about how she got this necklace, when I bought it, and how important it was.

We walked to the chapel then, so that I could than the pastor and say a prayer for my daughter. Not being raised in the church myself, I’m always hushed and in awe of places of worship. It’s a magical place for me, very special, and it never fails to calm me.

Done with Excursion #1, we took the bank of elevators up to the second floor, just above the chapel, where my husband sat with my father, waiting for our daughter to be done. Never one able to quietly sit back and wait, especially for something like this, I’d planned other excursions through the hospital. Maybe I’d stop in and do a comedy act for some sick kids or something. Maybe I’d get arrested for trying to do a comedy act for sick kids, who knew?

I knew I had some Super EZ crossword puzzles to muddle through and figured I should probably get started on it, so onwards and upwards we traveled.

The elevator banks opened to my husband whizzing by in the company of another dude whom I had never seen before.

‘OHMYGODTHEREYOUARE!!!’ He panted in my direction.

Without having a moment to react–which, in hindsight was a Very Fucking Good Thing–he shouted ‘SHE’S DONE! SURGERY IS DONE! COME ON, COME ON!’

I threw my stuff to Nathan, who either promised to sell it to the gypsies or take it up to the PICU for me, I didn’t give a shit either way, and followed The Daver, who was practically running.

“OHMYGOD,” I screeched, making sure I’d heard him properly. “IS SHE ALIVE? OHMYGOD, IS SHE ALIVE?” I was terrified suddenly by the commotion.

Then he turned back to me, “YES!” He yelled, my normally quiet husband yelled, echoing through the marble hallways and causing people to stop and stare. I didn’t give a shit who saw us. “She’s JUST fine, Becky!” Ebullient, I didn’t have a chance to react before we were ushered into this smallish room.

The Valium had dulled my nerves to the point where I really didn’t quite get what he was saying clearly, but the small room where we’d been stashed was obviously not an “Oh Fuck” room. There weren’t any pamphlets on organ donation, DNR’s, Power of Attorney, nothing, which was an awesome sign.

I turned to The Daver, unsure of why we had been shoved in a closet, and asked what the hell we were doing. “The doctor wants to talk to us now. She’s out of surgery and she’s FINE!” I don’t remember if I cried, but I probably did. This time, they were tears of joy. Pure joy.

I had a daughter. I had a daughter.

A daughter who would grow and embarrass her father with her thong underwear in the wash. A daughter who would probably eschew my love of frilly dresses, diamonds, pink and sparkly. A daughter who would hate me for years and spend hours talking about the ways I’d fucked her up.

But she was alive, my daughter. My daughter was ALIVE. And she was mine.

All mine.

Part VIII

Part IX

Comments = full of the awesome. Like gravy. I can haz an RSS RSS feed .

3 Responses to Sky Blue Pink

  • Katie says:

    This is my first time reading your blog and this story, and I have chills. Your daughter and I share a birthday, so rest assured she’s going to grow up to be an amazing person! ;) And, I know this is strange, but what drew me to this post was the title: Sky Blue Pink is what my mother in law calls the sky when it lights up before the sun rises or sets.

  • Jessica says:

    You have a beautiful little miracle! And I was also drawn to this entry by it’s title. My husband’s grandfather always refered to the sunrise and sunsets as “sky blue pink”.

  • Kimberly says:

    As i read your story it feels like I’m stepping back in time. my daughter Gracelyn was born Feb. 13th 2008 with encephocele via c-section. Over 50% of her skull was missing from the base of her neck to the top of her head with a quarter sized hole exposing her brain. the doctor’s told us there was nothing they could do for her and didn’t give het a time limit to live. she was sent home with anti patches to cover the “hole” witch grew skin and covered completely at 4 months. in fear of doing nothing to save her life her fathet and i decided to have reconstructive surgery on her to help try and “build” a skull for her. i was 4 months pregnant when she had her surgery on june 24, 2009. Gracelyn had a massive stroke two days later and went to heaven on the morning of june 28, 2009. Reading your story doesn’t make me feel so alone because the condition is so rare. i am happy your little girl made it through she’s a tough one! Best wishes to you and your family!

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