I have to be dreaming. I’m going to wake up and find that I’m still in Dr. Darlington’s waiting room, where I fell asleep before our appointment. Because what I see is my boyfriend standing in the one place I never wanted him, and that is an absolute nightmare.
“Jack?” My voice shakes, hoping this is all stress. Lots and lots of stress.
He smiles, but his body seems to curl in on itself, hands shoved deep into pockets, shoulders hunched forward, as if he’s protecting himself from this place. From us. No smile can hide the fear in his eyes. “Hey.” It’s so simple, and my chest contracts. His eyes skip like a river stone over my friends, seeming to bounce off their differences before settling on me.
I scramble up from the couch, trying to dislodge myself from this scene. Before he can learn to look at me with the shock he shows to my friends. Jack doesn’t fit here, the Ellie he knows doesn’t fit here.
Ryan backs up away from the couch as my actions send popcorn flying. Luis just nods from the chair, that single jerk of the chin that boys use to communicate.
Before I can get to Jack and shove him out of the room, Caitlin is ready for a fight. She’s never been one to make excuses for people who don’t understand us. Just because you grew up in an ableist society doesn’t mean you get a free pass. At least, not in Caitlin’s book.
“Jack? I’ve heard so much about you.” Her voice and demeanor are @APatientLife Caitlin, warm, welcoming, and definitely meant for an audience. She holds her hand out—the one missing a thumb, as if to test him.
Jack nods and keeps his grip on hers featherlight. “Uh, hi. Ellie doesn’t—hasn’t told me about—you are…?” He grasps for words, trying to fit them in an order that makes sense.
“This is CaitlinVeronicaLuisandRyan,” I say in one continuous word, before I slip my own hand into Jack’s and drag him toward the door. We need to be anywhere but here, where my lives are literally colliding. An explosion is imminent.
“Nice to meet you all,” Jack says over his shoulder as I pull him from the room. “Ellie, Ellie, stop,” he says before I can throw us both into the elevator. Mom hangs back, giving us some space. There’s a shift here; he stands taller, with the posture drilled into him by his choir teacher.
With a cautious look toward my mom, Jack steps closer, compacting the space around me, and coughs rip into my lungs. I want to hold it in, because that look—the one he doled out to everyone in the living room—I live in fear of being on the receiving end of that look of pity and hidden joy. Pity that this is the way someone like me lives and hidden joy that it’s not him. I know it’s not his fault—I can make excuses for him all day.
He steps closer and I want to lean against him. To let the Home fade to gray behind me and exist in his world of brilliant color. As if to prove himself, he takes my right hand, his thumb tracing the ring of scars left over from when my finger became my thumb, as if he can gain experience by association.
It takes everything in me not to rip out of his grasp. The memory of the first time he did it slams into me.
“Please,” he said, catching my hand again, his thumb tracing the slightly S-shaped scar running down the back of what is supposed to be my thumb. Whether because I don’t let people touch it or a lifetime of surgeries has rearranged the nerves, I saw his thumb travel over my skin, but not until it reached the base did I feel it, and the shock of it ran all the way up my arm. “I’m not scared.”
He wasn’t scared like Mom’s commenters, he wasn’t scared like Caitlin showing off how she pees standing up to her followers, he wasn’t scared because he knows that the world is going to be okay.
I rip out of his grasp, folding in on myself. As with everything in the hospital, it has to be done alone. I draw a shaky breath, my lungs settling back into their regularly scheduled breathing pattern, and Mom, sensing me floundering, steps in.
Jack stands there, hand still outstretched like he doesn’t know what to do next. As if a sudden move will irrevocably break us both.
“I was just going to make his mom some tea,” Mom says.
Great, I mentally bite out as if I’m shoving the word into a Milwaukee brace. Mom just gives me a big smile. She thinks this is helping me, that this was what I wanted.
Deep breath. And then I manage to say, “I’m gonna show Jack the game room.” It’s hopefully the emptiest room in the house. Mom nods eagerly and seems to shoo us away. Why does she never check in with me before making these decisions?
Because she’s always the one in charge of those decisions, my mind supplies.
My phone buzzes in my pocket and I can only imagine it’s Caitlin going THE FUCK, GIRL? But there’s no time to verify. Jack’s silent behind me and my head is screaming questions as we get on the elevator. He leans back against the wall, hands tucked into his pockets, his gaze possibly giving me a sunburn.
We wait to go down to the first floor and I ask the most basic question. “How’s it going?”
I reach for normal. That feeling that I have when I’m home, where everything fits. I’m just Ellie. I do things my friends do—speech and debate, choir practice, and swim team. I study for tests and don’t have them performed on me.
That’s the Ellie that Jack understands.
“Oh, um…” Jack flounders for words, as if he can’t process how I could just throw down a question like that.
“Tell me about school,” I say, not giving up on the idea of being who I am back home. Jack may be here for the first time, but he isn’t joining my hospital crowd.
Jack runs a hand through his hair, catching the back of his neck. “Is that really what you want to talk about?”
The elevator hits the bottom floor and I hold up a hand. I don’t want to do this where we might be overheard. Lucky for us, the game room is only a few steps from the elevator and blissfully empty. I close the door—breaking the rules, but I hope the staff understand.
Jack stands there in the middle of the video-gaming chairs, foosball table, and pinball machines, looking as uneasy as if he were in Darlington’s office.
I pull my shoulders up to my ears and shrug. “Look,” I start, because where exactly do I begin? And I choose to tell him exactly nothing. “I know it may seem strange to you, but yes, I want something normal. Something familiar. I want to know about everything I’ve missed.” In general I’ve found this is the best way to blend back into my life-life posthospital visits. Learn everything that’s gone on so that if someone makes a joke or a story gets brought up, it doesn’t feel like a punch to the gut.
“Why don’t we trade? You get one question and I get one. I’ll tell you about school, you tell me about surgery.” There’s worry in his eyes and he fiddles with the tie on his rope bracelet.
“How do you know I’m having surgery?” I saw his look, the way his body reacted, probably without him even realizing it. What is there to say? I’ve learned many times over that people like Jack will never understand me. One day, maybe, he’ll get half of it. But right now I’m too tired to educate him nicely. So he’s now entitled to the brunt of my anger.
“My mom mentioned it and then she showed me your mom’s blog.”
My blood runs cold and the world narrows to pinpricks around Jack. I always knew the day would come when my friends would find VATERs Like Water. But I still wasn’t prepared. There are years of my life on that website, all carefully chronicled by my mom. I thought I’d left all of that behind when we moved.
“Did you read it?” I expect my voice to shake, because my whole body feels like it’s vibrating. But I’m calm. So calm it scares even me. It’s like before surgery when they pump pure O2 through the mask before flipping on the gas. I know what’s coming and am already prepping to let go.
“What was I supposed to do?”
“You could have asked me.” A lie.
Jack rolls his eyes. “Ask you—really? That’s your response to all this? Do you know how you respond when people ask you about how you’re doing when you’re here?”
I shift on my feet just to remember I can. To try to knock some life back into me. What can I say? How can I explain something that won’t feel like reopening stitches? “There’s nothing to say—don’t you get it? I don’t have answers or things to say.”
There’s a line. There’s a reason I always stay on this side of it, because there are some things he can’t understand. That can be understood only after a lifetime of living and struggling with them. Words fail how to capture all of that, to boil it down to understandable moments.
He crosses the space between us and I feel the heat from his body. I want to be able to relax into him, but I turn away. “But I want to understand—explain them to me. You just shut me out. You pull away. What will it take for you to realize I’m here for you?”
“You wouldn’t understand even if I tried,” I say, finally letting out what’s been bubbling up inside me. There are things that people outside this world can just never grasp. Not fully.
The last time I tried to explain this world to anyone—she was my best friend. I was so sure she could handle it, that she would get my personal brand of normal. Her constant glances at the frame on my arm could have worn holes into it. Mom had suggested I just needed to be open about my surgery, tell my friends and show them this world was not scary. I had to be brave even when my friend’s stares cut my heart to ribbons. The rumors started after that, and whispers of freak and monster followed me everywhere. It all came out on Halloween. I was already on the outs with most of my friends, but Mom worked so hard on my costume—I was a fairy princess. My best friend looked me straight in the face and said: Freaks like you can’t be princesses.
I stopped telling people anything about my life, especially if they were important to me.
His fingers brush my chin, trying to get me to look at him, and I just … I can’t. Hurt rolls off him and I know it’s bad, but it would be so much worse if I tell him. He’d see me as a patient, someone less than he is. “You don’t want to try, do you.”
I focus resolutely on the ground. Words don’t have the weight to bear my emotions on this subject. Do I want to try? No, because he’s looking at my life like I’m an alien. He’ll see all these things that I have to do to be normal, and suddenly no matter how great I am, I’ll be just another sob story. Someone to pity—something less than human.
“Just give me something.” He pushes forward. “I’m right here.”
He picks up my left hand, intertwining his fingers through mine. My left hand. Not my right. That one is barely touched when there’s a normal option. Perhaps that’s where all this comes from. Because I see how people look at me every day and always choose the normal half.
When I don’t respond he pulls away, reaches for the door handle, and slips out. I close my eyes and feel like screaming, but much like surgery this is something to endure, and so I swallow my hurt and follow him out.
Our moms are seated by the first-floor fireplace, deep in a lively conversation. Mom can fit in anywhere because any scars she has from this experience don’t show up on her outside.
“We should go, Mom,” Jack says.
“Ohh … okay,” his mom says, her words dribbling out. She looks between us; I shrink back, wanting to disappear back into the game room. Then she looks to Mom, who also seems lost for words. Silently, they pick up coats and hats. Mom comes toward me and I duck around her. I’d rather confront Jack than Mom.
“Jack, please,” I say, and take a step toward him, making the move I couldn’t before. This would be the moment to say everything, to tell him what’s going on, do the one thing he’s asking for. He turns around, defiant; I am not getting off with just surface words and shallow truths. If I want him to stay, to listen, I have to welcome him into this world. And I can’t watch him hate my life—so I stay silent. He nods when I don’t continue, like he knew I wouldn’t be able to and that’s why we’re here.
He pauses, fingers twitching like he’s nervous. We both don’t move, but neither can we give in to each other. “I’ll see you at Brooke’s party. But I can’t do this anymore.” His voice is soft and I want to wrap myself up in it. Those words are not a final blade but a needle ready to stitch us back together. He shrugs me off and follows his mom out.
“Ellie?” Mom’s arm wraps around me, and it’s only when she reaches up and smooths away my tears do I realize that I’m crying.
VATERs Like Water
This is the breaks
Age: 3 yrs, 2 mos. Entry #245
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It’s surprising the things that will come out of nowhere and hit you square in the face. And while most of you I’m sure are thinking about Ellie’s birth, her VATERs diagnosis, and the rather shocking discovery that our child might not make it out of the hospital—there are more devious ones.
I was surprised at how well I could deal with the unexpected from the doctors. Their cool, detached demeanor was somehow more comforting because they’re not supposed to be my friend, my family, etc.—they’re a doctor. As long as they are the best—it’s fine. No, it’s everyone else who’s a trip.
Coffee dates dried up.
Invitations for playdates were not just postponed but canceled.
Even just casual socializing—poof, gone.
My husband worked sixty to eighty hours a week and had a commute on top of that, so it was long days of me alone with Ellie. During her early years my life was just keeping track of all her surgeries and medical checkups. We straightened her hand and that was a minimum eight-week stay near Coffman. Back surgery was another big one. And of course around every surgery came the ancillary appointments. X-rays, CT scans, pre-and post-op checkups, PT, all accompanied by different levels of Ellie’s cooperation. There wasn’t time for a lot of socializing.
But when Ellie started preschool and suddenly I found myself in close proximity with my old friends, it was strange. I’d try to set up coffee or lunch and be met with shrugs and maybes.… Finally I pulled aside the woman who had been my best friend—let’s call her Becky for this story. Becky and I went back several years—we’d gone to the same college and settled down in the same town. Got married around the same time, and both got pregnant.
Becky had been one of my closest friends throughout pregnancy. We were, after all, normal then. No one, not even the doctors, could guess what was in store for me. At first I chalked up Becky’s disappearance from my life as just me being caught up in the new rhythms of being a mom. But when I did resurface and look for my friend, she wasn’t exactly welcoming me with open arms.
All I wanted to know was what was going on.…
She looked around nervously, as if some knight in shining armor might appear to save her from me. “I just … look, we love you and I’m sure it can’t be easy, but…”
“But?” I asked, pushing like I’d learned to do in the hospital, like I’d learned to do in the face of a doctor who wanted to talk over me. Stand my ground because no one is going to hand you anything.
Becky looked around, searching for anyone who could help her, but no one was coming to save her. The other parents raced for their cars once they saw us square off.
“But what do we have in common? Your daughter … the other moms and I … we don’t want…”
“She’s not contagious.”
“No, but what if one of our kids is too rough with her and something happens.…”
“Are you running an underground three-year-old MMA match or something? I can promise you Ellie may not make it in that ring, but she’s not going to break that easily.”
“This is not funny.”
“You’re right, you not wanting to include my daughter in your playdates is not funny.”
That made her angry. Her prejudice was just fine as long as it remained under the surface. “What are we supposed to talk about with you? No offense—what do you want us to say when you’re like Ellie has surgery again. That she’s in the NICU again.”
“I don’t know, maybe ‘That’s hard, do you want to talk about it?’ ‘I’m sorry’? ‘Is there something we can do for you?’”
Becky closed her eyes and winced because she knew, knew, that whatever she had just said wasn’t right. “We’re all struggling and it’s just … I’m sorry.”
She walked away after that, done with the whole conversation.
I’d already been blogging for a while at that point, but I went deeper then. Looking for other parents who were facing the same things, because if my community didn’t want me, then I would build my own. That’s how we started our charity to bring families together. Host events where we could discuss issues going on in our lives. How to deal with schools, friend issues, medical issues—be a support system that we couldn’t find in our everyday lives.
If you’re interested in supporting the cause, feel free to check out this link to donate!
In this together,
Gwen