Three Years Later . . .

>> Friday, October 7, 2016

Today is the 3-year anniversary of when Ada had her surgery. I thought to honor the day, I'd re-post what I wrote about that day way back when. I'm currently looking at my gorgeous almost 5-year-old, and you'd never know we went through this nightmare. Feeling very blessed today.

And there you were -- still sleeping -- alone in that big bed we had played in for hours before they wheeled you into the operating room. Your head was propped atop a small white pillow and your hands were encumbered by numerous tubes and wires leading to the machine reading your vital signs. It beeped and plotted and alarmed.

We were told everything looked good.
Yet, to us, that was hardly the case.

I didn't know what to say or feel in that first moment seeing you, so I think I muttered a simple "wow," in both disbelief and wonder. I counted your tiny fingers and toes just as I had when you were placed in my arms for the very first time. You looked as peaceful as you did back then. Calm, which is a rare to see with toddlers of your age, but especially rare with you. I took a strange, selfish pleasure in seeing you so still.

Your surgeon had gently parted your hair and tied it back in its first real ponytail revealing many, many stitches. Too many to count at a glance. I wasn't at all prepared for the length of your incision. A good four or five inches in all, starting at your right temple and running up to the crown of your head. It looked so much like the neat red stitching on a baseball -- precise and uniform and definitely well practiced.

"What did we do to you?" I said, shaking my head.

Somehow the tears weren't streaming down my cheeks by this point. I had imagined they might the whole day, but I was able to hold myself together for you. Or maybe I was numb. None of this experience was setting in. We weren't really there and it wasn't really happening, I mused. Little (almost) two-year-old girls don't get craniotomies.

Your nurse mentioned something about morphine and how you weren't in pain. His voice was low and soft, absolutely perfect for his chosen profession. I could swear I had met him before. His whole demeanor was so familiar; his lean build made me think perhaps we jogged together in a local race. It was silly. I couldn't pin it down. But I grew guilty wasting the brain power to place him. I should have been totally focused on you and somehow my mind could only wander anywhere else.

The morning of your surgery, you woke (too) early, probably due to all the commotion of us packing outside your bedroom. Instead of rocking and shushing you back to sleep, we let you get up and sip water while we loaded the car. I sat in the back seat with you trying to starve off your hunger with your favorite cartoons and countless pages of stickers that still litter the floor even a week later. You had no idea what was in store, and I had no idea if we had made the right decision.

Medicine is science, yet so much of it is interpretive. Surgery is as much art as it is mechanics, and each artist is unique in execution and medium of choice. Had we commissioned the right piece for your situation? Will we ever know? Will we ever be at peace with the not knowing?

You opened your eyes for a second when we tickled your foot, rousing you for your first round of tests. A few neuro residents, probably much younger than us, I thought, visited your bed and asked us questions about your diagnosis and procedure. They commended your pediatrician for catching the issue so early on, before the symptoms had started. They spoke and I replied, but all I could truly focus on was your breath.

"That's normal, right?" I asked several times. You were snoring, but it was a slow wheezing in and out because the breathing tube had irritated your airway. "Totally normal," said the nurse, his gaze fixed on your monitors. He was recording your vitals and preparing us for the journey to the PICU, the place in the following days we learned to love as a home away from home.

We had only just begun your recovery and yet so much of this event that we fretted about was already over. And thank goodness for that. At each turn, we still entered the unknown. Would you be the same when you woke? Would you hate us? Would you be in pain? A million questions and fears quelling only today. After a week fraught with worry and, in turn, jubilation as we've watched you return to your old self.

We walked down the street to the park yesterday. You love blowing dandelion seeds and hunting for more flowers and then repeating the process all over again. We did this for hours the day before your surgery and here we are again only one week later. There was a lot between this point and where we are currently, but those are all stories for another time. When you're older and we've all let our wounds heal.

We are so thankful for all your thoughts and prayers and incredibly humbled by this experience.

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