A stink eye that could rival a nurse’s greets us when Ryan and I finally make it back to the parking lot. We make our excuses, staying far away from each other, but getting on the bus forces us back into close proximity and I shy away as if burned.
Caitlin raises an eyebrow, curious, watching our progress. I meet her gaze and then look away, not sure how to answer her question. I drop into a seat, hugging the book to my chest. She shoves her earbuds in and tunes me out, payback. I don’t have to share, but she also doesn’t have to be available.
I kissed Ryan Kim.
I’m furious.
God, body. What an idiot I am.
That was not in the plan, at all. Period. End of story. And yet … I didn’t hate it.
I knock my head hard against the seat, as if I can force sense into my brain cells. I was here for Jack and I kissed Ryan. Just to add salt to the wound, I pull up a new conversation with Jack; I should say something.
Anything.
Ellie
I’m having surgery on Wednesday.
I type out the message, and my finger hovers over the send button. I’m doing all of this for Jack. So that I can get back to him. So that my life can be the way it’s always been. But now I struggle to hit send. Telling Jack, letting him in, would shatter every rule I’ve made for myself. They keep me safe—protected.
And alone. It’s Ryan’s voice in my head telling me that. But I saw him before and after with his friends today. Perhaps he doesn’t believe my words, but that doesn’t mean they’re wrong.
Veronica’s giggle startles me.
She and Luis sit close together, bent over his phone. I’m guessing there’s a movie playing, each of them with an earbud in. They’re figuring it out, and hope glows in my chest. A few weeks ago—hell, a few hours ago—I would have been like No—don’t do this.
I want them to make it. I want to be wrong. Luis deserves something good. He got a cancer diagnosis. He gets a pass for at least the next year of his life. At least until they’ve declared him in remission. Veronica has her faults, but I think she’ll be good for Luis. And if she’s willing to take a chance … what does that say about me?
My message to Jack is still there, waiting for my decision. Guilt eats at me, and my teeth gnaw at my lip. Needing to prove that it’s still Jack I want, that the kiss with Ryan meant nothing, I hit send. Sticking my phone back deep within my jacket pocket, I lean back. Shadows from the streetlights cast a warm glow over the interior of the bus. It’s only five o’clock and I’ve made a complete mess of my life.
Ryan sits across from me, keeping to himself. I can still feel him near and the kiss that was. I clench my hand around my phone, reminding myself of Jack. Ryan’s just some boy who believes that doctors walk on water.
A boy who made sure I was going to have surgery.
For Jack.
For me.
So why do I feel like I want Ryan to be more? I look at him again. He’s stretched out as much as he can be in his seat, limbs all akimbo. His eyes are closed and his hair falls gently in his face. The dim light hides anything wrong with him. He opens one eye and then the other to look at me. He smiles, like he doesn’t regret a thing we did.
I turn away and pull out my phone, because I am a cliché and cannot survive without it for five seconds. Please let there be a text from Jack. Just a reminder of why I’m doing this. But I don’t even see a read receipt, and I’m ashamed to say that I stare at this message for a good five minutes.
A new notification pops up. An update from Mom’s blog. It just sits on my home screen. I check it again, sure that I misread the alert. But it’s on the screen, daring me to click on it. Seeing that stupid reminder that I am just a subject for people to ogle makes my stomach turn.
Mom wouldn’t really do this to me, would she? After we talked … after she promised. Only one way to find out. Deep breath and I click the link. Glutton for punishment: that’s me. VATERs Like Water was supposed to be over or at least that she’d ask me before sending out something else, that I would have a say in what she said and what she didn’t. I thought we had an understanding.
The page loads and there’s the new post.
My heart jumps into my throat.
Breathe, I tell myself. Maybe this is just her goodbye post or an explanation. The subject line doesn’t give me hope.
This is a new verse, same as the first.
Seconds tick by and anger bubbles up inside me. I am ready to yell at Mom. How dare she do this to me? After everything—she seemed like she was on my side.
I scan the post. There are a few minor adjustments, but I am still the focus of her life. The thing that keeps this whole engine running. She writes about life, the separation between the online and the real world. Fear for me, for having surgery. How this whole thing has weighed on her.
She heard me, I guess. But instead of cutting back like I thought we agreed, she made herself the subject of my life. Now it reads like I’m there just as a trial for her.
I don’t know if people try to talk to me on the way back to the Home because my whole body feels caught in sleep. Like walking anesthesia. I’m here, but time means nothing.
The bus pulls into the Home and I don’t wait for my friends, I flee. They hang back, clinging to one another and the last scraps of fun we had. My lungs hate me for taking the stairs, and I cough most of the way up the last flight.
“How was the trip?” Mom asks. She’s in bed, her dark hair pulled up in a messy bun. Concern covers her face as I let out a few more coughs. Serves her right.
“You wrote another post?” My words come out in a sustained hiss that instantly has Mom sitting up and setting aside her tea.
I ignore her calm, happy demeanor. Maybe this morning I thought we could find a new beginning, but now? I am angry. This was not the cap I needed on my otherwise good day.
“I told you I didn’t want you to write this anymore.”
Mom stands up. Good, we will have this fight on our feet. The press of her lips says she’s drawing the lines between us. Normally in the hospital they blur until we’re caught somewhere between parent-child and sister-friend. Usually I don’t mind this. It makes the long hours go by easier, but now she gets to draw the lines because she’s the adult, and I want to scream. These are her rules and I am just forced to play by them.
“There is so much we’ve done for our community, for other families—raising awareness, funds. You will understand when you are older.”
“It’s my life.” How many times has this been the excuse? But there’s not a brace, a test, or even a surgery that can justify what she is doing to my life.
“It is all of our lives, Eleanor.” And out comes my full name just to try to kill this conversation.
If she can ignore my direct request, so can I. “Right, because I ruin everyone’s lives.” That is a dead hit. Mom recoils like I’ve punched her. “Or what is it—I’m the hardest trial of your life.”
Mom covers her mouth with her hand as I spit her words back at her. They’ve been a poison in my system long enough; it’s time she got a dose. Anger dots her cheeks with red, and I know that I should back up. Take the warning for what it is.
I won’t stop. This is my life and I’m tired of the way she writes about me—like I’ve somehow irrevocably changed her life. Ruined it, even. And then she plays martyr. People cheer for her and they pity me. Tell me that I should be grateful for this, for what my mother does for me.
“That—I can explain.” She’s still caught in the emotional gut punch of her words, and I’m glad. Now she can live with what she’s written and realize how horrible it is.
“Sorry to have been such a burden to you.”
“Eleanor,” Mom says, her voice gaining that mother’s domineering edge, but I can see she’s fraying at the edges. “That is enough. When I wrote that it had been a long day and I was tired and alone.”
“So that makes it okay? To just tell the world how hard I make your life?”
Tears fill Mom’s hazel eyes and she fights them back, swatting angrily at them when they fall. “I was just—I shouldn’t have said it. I’m sorry.”
Her apology has no effect on me. What good are words when actions don’t follow? “But you never deleted it.” I swallow down the hot tears that threaten to break free. My life has given me ample opportunity to learn to suppress tears. Mom starts for me, like she’s going to hug me, but I bolt out of the room.
Wrapping my arms around myself, trying to hold everything together, I wander the halls. And then I remember Caitlin’s words: Come beat down my door. So that’s what I do.
I’m hiccuping back tears when she opens the door. Without even asking, she stands aside and ushers me into her room. I curl up on the twin bed, because standing isn’t something I can continue right now.
Her mom comes out of the bathroom.
That’s right—there’s no escaping parents here. We’re locked in with them. I’m worried she’ll make me go back, force me to face Mom again. Her shoulders drop and I see the concern on her face. I don’t know how to ask for what I need because there aren’t words. Instead I just thrust my phone at Caitlin, who sees the blog.
I just … can’t go back to my room. Not tonight. Caitlin curls into me, and her mom gives me a small smile before she ducks out of the room. Caitlin turns on a superhero movie and I fear I might cry all over again.
Caitlin doesn’t need to talk or ask questions. She just lets me be. I sink into her comfort, that she’s holding space around me so I can breathe.
Her mom comes back in with my toothbrush, jammies, and, most important, meds. “I’m gonna make up the trundle, Ellie,” she says to get my attention. “I talked to your mom. I said I thought it was best if you spent the night in our room.”
I get ready for bed, surprised at how easy this can be. Caitlin and I live too far apart to do the normal sleepover thing. But this feels okay, it feels safe in a way I miss about the Home and Coffman. I could just be hanging out with Brooke. Hospital or not, Caitlin is safe.
I wash my face and brush my teeth. I’ve never felt so alone. Everything I do seems to bring more people down on me. I crawl into the trundle and pull my legs up to my chest; I cough, turn onto my side, and let my lungs rest. Mom thinks that she’s a part of this.
Fine.
She can take the sleepless nights.
I’ll stick red-hot needles into her lungs and see how she likes it when they burn. She’s a part of this, but she isn’t this.
VATERs Like Water
This is the fallout
Age: 2 yrs, 8 mos. Entry #177
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There are lots of things doctors prepare you for when you have a child with special needs. Of course there’s the usual suspects—surgery, life expectancy, prognosis—but the one thing they can never really prep you for is what it’s like to go back to the real world.
To leave that safety of the hospital, where a team of highly trained specialists is prepared to save the child that you failed. They can tell you all the time that it’s not your fault this happened, that it’s just … the way the cells divide.
But they were my cells.
Mine.
All I wanted for my child was to make sure she had the best start to life and I couldn’t even do that.
Those are the things a doctor can talk to you about and probably will talk to you about. They should, and if they don’t—you may want to find a new doctor. It’s not a fun process and certainly not easy, but as I’ve said before, finding the right team for you and your child is priority number one!
This was just to be the hardest trial of my life. What no hospital or doctor could ever prep me for was going back into the world and what saving my daughter would do to my life.
Before Ellie was born I worked full-time in marketing. I had clients, went to the office—it was a whole thing and I loved it. Excelled at it. It was a relief some days just to do something that I felt good at—no, great. I had been warned—countless times—that being a working mom would be hard, and some even went so far as to suggest that once I had my baby I wouldn’t even want to look back.
But I was so excited to be a working mom. As much as I wanted my child, I loved my job. But nothing prepares you for this, having a child that’s not like other children. No book actually delves into how your life is about to be turned upside down and here’s how to prepare for it.
As you all know, Ellie required a lot of surgeries when she was little. Many of them were separated by only a few weeks. Enough time to get her well enough to go back under the knife. It ate up a lot of PTO. No matter how well I did at my job, no matter what I said to my boss, there was a choice to be made.
At least that’s how my boss phrased it. Because they couldn’t fire me outright, that I’m pretty sure is illegal, but he gave me a choice. I could take off for Ellie’s back surgery, which would take me out for at least a month between the prep, the procedure, and the healing time, or I could keep my job.
There was no middle ground.
No understanding of what I was going through, because so few could even consider what it was like to have a child who needed constant medical care.
I would like to say the choice was hard—that I was willing to be angry, to fight my boss … but it wasn’t and I didn’t.
I quit.
Or rather I was forced into quitting. I packed up my desk and never looked back.
You got this too,
Gwen