It takes some doing to get us from Coffman to St. Joe’s—the only hospital in town that handles pediatrics. Unfortunately, of the two hospitals it does not connect directly to Coffman’s main complex. The moms are skeptical, but Ryan complies and even helps convince our elders that this is going to be worth the short bus ride.
Oh, the joys of being underage.
We drop into seats on the bus and our moms give us some space.
“You know your way around this place,” Ryan says, his voice catching an edge that feels like sandpaper and judgment. I don’t snap at him.
I think on some level this is why people fear hospitals. That doctors will fail—whether that means death or a worse life like mine, it’s hard to say. If I had a dollar for every time someone told me they’d rather kill themselves than have my life, I’d never have to worry about medical insurance again.
Where Caitlin would give me tough love, I decide to take Ryan’s advice and be a team player. Open up to him, if only to prove that I can. “This was like my summer camp,” I say, leaning in when everything inside me says Pull away. “It’s never like the movies—summer camp, I mean. Like, you know how even high school isn’t like the movies? But that doesn’t make it bad. It’s just a shift in expectations.” Unable to look at him, I focus on my hands, my normal thumb running over the scars of my surgically created one. Lots of people see only the bad, and I guess we’re trained to, but there’s something good here.
Ryan says nothing. When I finally gather my courage and look up at him, he’s just staring at me. Like I’m the first snowfall of the year—something beautiful and magical. I wiggle in my seat.
The bus pulls up to St. Joe’s and we all get off. We pass through the large stained-glass doors, our breath coming out in puffs of white. The cold air makes my lungs scream and threaten to cough, but I shove it down. While Coffman feels like camp, a hospital still feels like … a hospital. A place to cut and stitch and hurt.
I swallow, and as if he can sense my fear, Ryan squeezes my hand. This is supposed to be for him, not for me.
“Caitlin’s in room two oh five,” Mom says, reading my thoughts. I haven’t exactly told her why we’re here, but it’s pretty obvious all things considered.
We check in and I lead the way to Caitlin’s room. I’m surprised she’s even in a room; her surgery is outpatient. I guess they just want to make sure she can check off all the things to be released.
“Knock knock,” I say, pushing open the door to her room. I should have waited, probably, but there’s very little I haven’t seen of Caitlin over the years. Postsurgery Caitlin isn’t something new for me.
Her hospital room is private—like all ped rooms—and looks the same as every one I’ve been in. A bench that turns into a bed against the far wall, a green pleather rocking chair by the large bed. Dim lights and so many plugs and wires coming off the walls that it looks like the back of a TV.
Caitlin sits up in bed, her phone in hand, fingers going a mile a minute. It’s a gut punch, a reminder that we’re caught between not okay and okay. Caitlin and I haven’t really talked since she blew up at me and then texted me, but if I know anything, it’s that she’ll be there if I need her.
I hope.
The parents fall back, clustering by the door. I want to kick them out, but hospitals, surgery, and general concern will keep them glued to the room.
Ryan seems scared to even come close. A curtain divides the entryway from the rest of the room, but it’s mostly pushed back. I nudge Ryan toward the chair and try to tell Caitlin with a look what’s going on with him. He needs it more than me. He brushes his hair out of his eyes and sits.
Small miracles.
“What are you doing here?” Caitlin’s forced disinterest, bordering on hope. Her question is directed at me and meant to feel out the edges of where we left off. I still don’t know why she was mad at me, but I need her right now.
“Ryan needs a medical coach,” I say. Caitlin’s eyebrows shoot up. This isn’t about me; we can deal with our relationship later. This is about Ryan.
“I use my powers for good.” The implication somehow being that Ryan is evil? “Don’t twist my words, don’t—”
“I haven’t—”
Caitlin holds up one IV’ed hand to silence him. With her other, she reaches for the table that extends partially over her bed and grabs a skein of yarn and a crochet hook.
I smile; she’s on board.
“Ellie, you want to go grab some Popsicles?” Caitlin nods toward the door.
I see myself out as the interrogation starts. Ryan needs a taste of his own medicine, and there’s no one I know better who can dish out medical advice than Caitlin.
She’s the best at reading people into the hospital, a guide of sorts. Hospital living is like someone makes you a superhero just for a few days. You get the taste of it, the ups and the downs, but in the end, you don’t stay like that. You can walk away. The only difference is that people usually want to stay a superhero; no one seems to want to stay like us.
At least that’s what I’ve gathered about superheroes from Jack. The thought of my maybe-boyfriend stings. I wait for the surge of panic, the feeling that any form of communication with Jack about this part of my life would be catastrophic, but it doesn’t come.
There’s just relief that I found someone who might be able to get through to Ryan. To explain to him what I’m clearly failing at. I don’t want him to hate this place that feels like such a part of me.
The nurses’ station is easy to find and better equipped than when I was having the bulk of my surgeries. The nurse goes to find the Popsicles and I’m left to wait.
“Here you go,” the nurse says, lining up three cups each with a Popsicle sticking out. I maneuver my hands to carry them and head back for Caitlin’s room.
I push open the door and find Caitlin’s crochet project growing by the second as she listens to Ryan. I can feel the stares from our moms, the way they seem to lean toward us as if they can be protection from this storm. But perhaps instead of protection, they could learn that this isn’t a storm to be waited out but a place for us to learn to live.
“Do not,” Caitlin says, and for emphasis she points her hook at me, “let this one corrupt you.”
“Hey, I’m having the surgery, thank you very much,” I say.
Both of my friends exchange a look.
“Be careful,” is all Caitlin says with a very pointed look at Ryan. What is she talking about? Why would Ryan need to be careful, other than the obvious, of course, and Caitlin isn’t into stating the obvious. She sees pieces and makes them a story that she reads, filling in the gaps with too much personal knowledge.
“Don’t worry.” Ryan reaches out and takes my hand.
What did I miss?
VATERs Like Water
This is how you fix a child
Age: 7 yrs, 6 mos. Entry #532
Comments: 2.6K Bookmarks: 250 Shares: 40K
Ellie was six weeks old when she had her first surgery. She looked so small when she was first loaded onto a child gurney and taken through those double swinging doors to the OR. Strangely enough, although she was tiny and this was her first—this was the easiest choice.
Easy because there was only one choice: life or death.
And there was only one way to fix her heart. Balloon valvuloplasty.
We chose her life.
It came with plenty of fear—I don’t want to make it sound like this was easy-easy. Like ordering take-out for dinner easy. There was plenty of fear that this choice, this decision, wouldn’t work, but without it she wouldn’t make it. I sat on the edge of those hard plastic waiting room chairs for hours until Ellie was brought into recovery. But it was a different kind of worry. It was the worry of losing my child. The idea that I would never see her eyes blink blearily up at me. That her gummy smile would slowly fade from memory. There was a promise in me to always find her the best doctors, to make sure no matter what happened she had the best of everything.
Surgery was a defense, a way to keep her here, to give her life.
Once we succeeded in keeping her stable … things got complicated. Ellie’s lower right arm was … in layman’s terms—a mess. She only had her ulna, the tissue below her elbow was shot. She had three usable fingers and an extra one that was stuck somewhere between a thumb and a finger.
Her back also wanted to compete for attention with malformed vertebrae and every possible presentation of scoliosis.
Internal organs were there, and mostly functional. Missing kidney, extra-large liver, ill-placed heart. The laundry list went on and on.
The problem with all of these VACTERL pieces is that none of them were going to kill her in six months, in four weeks, in a few hours. We were no longer playing a game for her life; we had entered the arena of quality of life.
That’s when choices really hit the fan. Let’s take her right hand, for example. She’s missing her radius, the larger bone in your lower arm, as well as a thumb. Because the ulna wasn’t strong enough, it curved, placing her hand at a ninety-degree angle to her arm. Of the four fingers she had, only three were really functional—and I use that word loosely. Her fourth was completely useless.
Choices of what to do for her abounded.
We could amputate the partial finger/thumb and leave her with three (mostly) functioning fingers.
We could take a toe and use it to substitute for a finger.
• But then whose toe? Hers? Was it worth it to mess with her normal feet?
• Could my husband or I give one of our toes?
• If we had other children, they would probably be a better match—could we force (a nonexistent) other child to give a toe for their sibling?
Should we do thumb pollicization?
• If so, when?
What about hand straightening?
• And if we did this, then did we fuse her wrist?
And let’s not forget about timing … doing this sooner rather than later wouldn’t allow Ellie to build up bad habits. Habits she was already developing, such as using her pinkie and what should be her ring finger to grab things, like a crab claw because there was no thumb for her to pinch with!
Weighing over all of this was the biggest question: How would Ellie react when she’s older? Will she hate the decisions we made now?
There was research and sleepless nights and so many what-ifs.… I used to rock Ellie late at night trying to get her to sleep and think, All I want is for you to be happy. I want you to be normal.
And so I made a choice.
Just keep moving,
Gwen