Chapter Five, The Surgery Party

Me: Day 22: today I am thankful for music. Singing with my kiddo is the best thing ever.

Janey: what songs does he like to sing with you?

Me: Moonshadow is his current favorite. He belts the bridge like a crazy person. It's hilarious! He also chooses Swing Low Sweet Chariot a lot. He always has a bunch of questions when we sing that one.

"Mom, what are vainjels?"

"What?"

"You know, (sings dramatically) 'a band uh vaaaaain-jels come in for me'. And why are they coming in for you?"

-- Facebook post and comments from November 22, 2011



April 3, 2012

I don't specifically remember how we spent the morning. I have flashes of memories, but most of them center around trying to not appear stressed out in front of Sam. I do remember going along with the story that a bunch of people were going to come get him and take him to a "surgery party". He got some premedication and was having a great time as we all paraded down the hall on the way to OR.

I remember kissing him in the hallway, smiling until my face felt like it was going to split, and telling him that I couldn't wait to hear all about his party. I don't think I cried until he was gone.

I remember how badly it hurt to watch them wheel his bed away.

Dr. S had told us the surgery would take "five to fifteen hours" depending on what they found when they got in there. We all hunkered down to wait.

Jordan, his family, and some friends waited in the waiting room.

Papi went back to the Ronald McDonald House; knowing him he spent the day cleaning or finding repair projects to volunteer for.

Grammy (my mom) and I spent most of the day in Sam's PICU room. There were two rocking chairs set up side by side in the void left by his missing bed. The monitor screen was off. The IV pump was off. The TV was off. We sat and, as we rocked, she knitted the arm of a sweater. She took apart and reknitted that same sweater arm a bunch of times during the months that followed. I held my cell phone, waiting for the calls that would come from the OR to update us on how things were going.


It was surreal to be sitting there waiting for Sam while there were people not too far away cutting into his head. I know I keep using the word surreal to describe things, but I don't have a better one. My mom, at one point, said, "This must be what falling off the edge of the earth feels like. At first it's terrifying, but then you don't ever land... there's actually nothing to land on, so you just keep falling and falling and eventually you start looking around and thinking, 'Huh. Wow. I just fell of the earth. Now what?'"

I really couldn't describe how it feels any better than that. A horrible stomach-in-throat feeling, an absolute lack of control, a slow realization that the "worst" hasn't happened (but may yet come-- or may not), and no idea when or where the landing may come... and somehow, once you've been falling long enough, falling starts almost feeling normal...

Of course the surgeon had told us all of the awful things that could happen. The list of complications was long and many were severe. The big one that they worried about (other than the tumor potentially being heavily involved in the brain stem-- which controls necessary things like breathing) was something called posterior fossa syndrome which could have an effect on speech, motor control, swallowing, and lots more. Death, ventilator dependence, inability to speak, walk, swallow... all of these things and more were possible.

"I think," I said to my mom as we rocked side by side, "That I am mourning my idea of who he could have become."

"Jenny," she replied in her most serious-yet-incredulous mom voice, "Our children never turn out to be who we want them to be anyway. They always just turn out to be themselves."

Thanks for that, Mom.

Thinking on that statement in the weeks and months that followed, eventually led me to the realization that he is perfect and whole just as he is, that cancer was a part of his path from the moment he was conceived (a fact of which we were just blissfully unaware for the first four and a half years), and that all of life is unfolding exactly as it ought-- pain, beauty, love, grief, and all.

I wish with everything I am that his path could have been different. That he wouldn't have had to know about that kind of pain or the losses of function that were yet to come. But I never grieve for who he "could have been" anymore. He is who he "could have become" and he is INCREDIBLE.

Facebook posts on surgery day....

11:06am
Sam just went into his "surgery party". He was jolly and playing with his animal friends as they wheeled him down the hall.

2:41pm
Just got an update from nurse Brian in the OR. Sam's doing, in Brian's words, "great". We'll get another update at around 4pm. We should have an idea of how much longer surgery will take at that point. Thanks EVERYONE for all of the good love and energy being sent our way.

4:35pm
Update from OR, Sam's doing fine. No estimate yet on how much longer. They're resecting the tumor as I type. Carefully, slowly... I have been overwhelmed through this whole experience and especially today with how wonderful human beings can be. My son, my baby, means more to me than I can say. That so many people, friends and strangers alike, are giving us support and energy through this just blows me away. Thank you is inadequate.

7:01pm



Just after the surgeon came to tell us Sam is out of surgery and on his way to PACU, I saw this rainbow through the window. Surgery went VERY well. Updates will continue as I am able. Hurdle #1 cleared. Now we wait and hope for continued good news.

9:19pm
Sam's back in his room, extubated, and pissed off that we won't let him drink from a cup! Toes and fingers all wiggle, swallow and voice totally intact, vision is not entirely normal, but swelling is going to change a lot of his symptoms between now and recovery. I have no doubt that this AMAZING outcome is due in part to all of the positive energy that has been flooding our way. I cannot thank you all enough. My boy is still himself and I am the happiest and most thankful of mothers.


Tomorrow, Chapter Six, Post Op....