"So, when we get home, I'm going to get crackin' and get the car all packed and you're going to eat some food and take a nap."
"What does get crackin' mean, Mom?"
"Oh, it means get to work quickly and work hard."
"Oh, in that case, before I eat food and take a nap I need to crack out on going to the bathroom first.”
--- Sam and me, November 27, 2012 8:37pm
There's a funny skill that many of us who are healthcare providers have. We learn to balance our empathy with our need to protect our hearts and spirits from being broken by the tragedy we witness. The people who don't learn how to maintain that balance go one of two directions-- they either get hard and lose their empathy or they get emotionally exhausted and fragile. Some might argue that those directions are actually one and the same....
Before going to the hospital with Sam, I knew what it was like from the nursing side. I knew how to be genuinely empathetic, but not entirely personally involved. I think that most of my patients (and their families) never knew that I was maintaining that bit of separation that I needed in order to make good clinical decisions and keep myself and them safe.
Even for people I didn't like or respect on a personal level, I could find a way to be empathetic on a human level... though sometimes it required immense effort.
In PICU I could see, for the first time, how that separation looked from the patient side. There was just a tiny barrier, transparent, like a thin membrane, between the staff and me. I don't know that I would have noticed it if I didn't have experience with being a member of a nursing team. The staff were incredibly kind, supportive, and warm. They were genuinely and deeply empathetic. Surrounded by the equipment, smells, drama, and language that I knew well and felt comfortable with, I wanted and spent time seeking the kind of connection that exists between team members... the camaraderie and unthinking support that is necessary to perform well in emergency situations. Despite how nice everyone was, despite the fantastic care and the amazing support, I felt the lack of true, deep companionship acutely. I missed my work family. I missed being included in the dark humor that makes all the horribleness endurable. I missed being part of the team, and even though I was in the middle of a work family that looked just like mine (and was, in fact, surrounded by my actual family), I did not feel like part of the gang. It was disconcerting.
At first I didn't even know what was missing. I just knew that something felt out of place, but *everything* felt out of place so it took me a while to put my finger on it. If there is one thing that sitting vigil night after night by your child's bedside allows, it's time to think. And think deeply. About things that might have never occurred to you otherwise.
Once I understood what I was trying to obtain and the reasons I wasn't getting it, it made sense and I didn't begrudge them their need to keep that membrane intact. I don't know that I could work in a unit where children routinely died. It's hard enough to work where adults routinely die. But kids? That's some crazy stuff right there.
On June 28, 2012 at 8:01am I wrote:
"I understand the lonesome part all too well. I kept finding myself trying to be real friends with the nurses up here, just because I missed being a part of a team, being part of a cohesive whole, so much. Of course, while they were incredibly nice and I made genuine connections with a few of them, they were working and here I was in the role of patient. Or parent of patient, but same diff. It's funny the things you learn about yourself, your needs, desires, and hopes, when your life and the pieces of yourself that you take for granted are suddenly derailed and you're forced to look for new coping strategies."
-------
Now back to the story of Sam.
April 6, 2012
Sam hadn't pooped since surgery and it was becoming a bit of an issue. When nurse Jamie came in and introduced herself as the "Poop Fairy", both Sam and I liked her immediately. She became the first of several nurses that I felt a genuine, personal connection with.
... and she had a liberal hand with the miralax.
All stated goals achieved.
My Facebook post of the day:
11:14pm
Hey cancer, I got something for you.
11:18pm
Just for the record... he has NO idea what this means and was actually telling me that of the three games we were deciding between playing, he wanted to play the second one. I debated on posting it, what with it's inappropriateness and all... but then I thought, no. My child having brain cancer is inappropriate and cancer really should just go f**k itself. Sorry if that's offensive, but that's how I feel.
Tomorrow, Chapter Nine, The Poop Fairy continued.
I. LOVE. THAT. PICTURE. I loved it when you posted it, and I love it now. It's a testament to your ability to maintain normalcy, and part of your normalcy was to have a camera in hand and taking pics of your beautiful boy and catch this HILARIOUS shot. Anyone who knows a shred of anything important about you and Sam knows that this shot was a one-off that is only hilarious out of context. And you gave it new context that was PERFECTLY appropriate. Because, fuck that cancer, dammit. <3
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