Books: Off to the Park - Stephen Cheetham; Before I Leave - Jessixa Bagley; Ida, Always - Caron Levis
Song: Sing to Me - Jhene Aiko
...
APRIL
It's not a good day for Moonie.
I've been lying in bed with her since before the sun came up, bearing witness to pain I have no control over. I've been doing my best to massage her limbs and lessen the tension in her legs, but it doesn't seem to be helping. In fact, I might even be making things worse.
"Hurts… it hurts, Mommy," she sobs.
Her legs have been spasming for the better part of two hours, jolting the covers as they jerk and twitch. Her feet are cramping, toes curling inward to the point of being crunched.
"I know," I whisper. "I'm so sorry."
Her back arches as she bends her neck, pushing my arms away when I try to wrap them around her. Her lips are chapped and so are her chin and cheeks, the skin in those places having been overwhelmed with saliva for the past handful of hours. I can't wipe it away faster than it comes out, and I'm worried about her getting dehydrated.
"Honey, let's get a drink of water," I say.
There's no chance of her holding her own sippy cup today, at least not right now. So, I grab a pink one from the nightstand and hold it to her mouth. She parts her lips, but as soon as she closes them around the nozzle, her muscles clench and a huge wave of tension rips through her, which forces the sippy cup out of my hand and onto the floor.
I reach over her to grab it, then try again.
"No," she says, twisting her neck away so I can't reach her mouth. "Stop. No!"
"You need water, baby," I say.
"No," she says again, writhing in the opposite direction.
With a heavy sigh, I place the cup back on the nightstand and worry. Worrying is all I've been doing for the last however-many hours this has been going on.
Jackson left before sunrise. He'll be home around dinnertime, not too late, but I wish he was here now. I felt too guilty to ask him to stay this morning, but that was before I knew how hard today would be. Now that he's gone, there's no chance of getting him back. A hard day isn't an emergency. I can handle this; I've done it before. It's just easier when he's here.
"Maybe we should read a book," I say, sitting up.
The books we've collected for Ramona have been carefully cultivated. After she was diagnosed, we got rid of a lot of our stash - the books with plots like 'little girl comes across an obstacle / little girl perseveres / little girl overcomes.' Because we learned that persevering isn't enough for every little girl. We thought that Ramona deserved stories that were more well-rounded. Stories she could actually see herself in.
So, in this instant, I pick out 'Off to the Park' by Stephen Cheetham, which she loves because she can flip the pages easily and it includes a lot of tactile, bright and shiny aspects.
"Look!" I say, trying to sound excited while Ramona fusses beside me. "Off to the park. Can you flip the gate on the first page?"
She throws her head to the side and smacks me right in the mouth, the back of her skull coming into contact with my bottom lip. She doesn't see what she's done, she doesn't even notice, but the pain starts instantly for me with a dull, heavy throb. My jaw drops, but I don't say anything. She doesn't have to know. It wasn't her fault.
"Ramona, can you flip the gate?" I ask again, gingerly touching my lip with my fingertips. It's already getting puffy, but that's fine. I can live with a swollen lip.
She doesn't answer. Instead, she cries and forms unintelligible words and sounds. I put the book down and try to maneuver her stiff, uncooperative body, but it's difficult. When her muscles go rigid like this, it's hard to get them back. There's no way to force it.
She ends up with the top half of her body cradled in my lap and her legs hanging off the bed, straight out. In this position, she starts bouncing her legs in tandem, up and down, up and down, until she finds a rhythm that soothes her. Instead of pinched and tight, her face goes placid, and her features smooth out considerably. She stares at the ceiling, breathing shallowly, and continues to bounce.
She's done this before, a handful of times. It always calms her down. I'm not sure what it is, maybe it's the repetition, maybe the suspended weight, but I'm just glad for the relief it brings her.
I pick up the camera and switch it on, focusing it on her bouncing legs. "This is something that Ramona does to make herself feel better," I say. "We all have things that make us feel better, and this is something she likes. She also likes ice cream, when she's feeling good enough to eat it. Right, Moonie?"
I pan the camera towards her face, but she doesn't even register that I've spoken. Her eyes are glued in the same spot on the ceiling, and drool has pooled on her chest and neck. She's in the zone, that's for sure, which isn't unusual. I flip the camera off and pet her hair away from her face, giving her another repetitive motion to focus on instead of the pain shooting through her muscles.
I'm not sure how long we stay like that, but her legs don't stop. Mine, on the other hand, get sick of being crossed on a tiny bed, so I decide it's time to get up and go for a walk.
"Should we get outside, Moon?" I ask, then lift her from the bed.
In contrast to how she felt a few hours ago, all stiffness and rigidity, she's now a limp noodle. This isn't exactly strange, either. Her muscles can't regulate themselves, so on bad days it's either one or the other - sometimes, both.
She flops in my arms as I find a good position to hold her in, and I wipe her mouth with my sleeve. "Let's go outside," I say, then kiss her cheek. "The sun's out."
I carry her sideways, her head facing me while resting in the crook of my elbow and her feet swinging limply from my other arm. When we walk out the door, she directs her eyes up towards the sky and the birds and the tops of the trees, but doesn't say anything out loud.
I've gotten good at reading her mind, though, and looking up when we're outside is one of her favorite things to do.
"See the birdies?" I ask, looking up myself. "See them all flying?"
She blinks, still tracking their movements as I start our path around the block. She doesn't tear her gaze away from the sky or the birds, no matter which direction I go in.
We've been walking for about twenty minutes when we pass one of our neighbors' houses, Mrs. Green. She's on the porch, watering her flowers, when she spots us walking by. "What a nice day!" she calls out.
"I know," I reply. "Beautiful."
She walks down the steps and meets us on the sidewalk, where she looks at Ramona with a soft smile. "She's gorgeous," she murmurs. "Just gorgeous. And such a fighter. I know that she's going to pull through this and get better in no time."
I don't know what to say. I'm at a loss for words. Small, stuttering sounds come out of my throat instead of sentences, but all Mrs. Green does is pat my arm and tell me and Ramona to have a good rest of our day. Then, she retreats back to her porch and leaves us to our walk.
My pace has significantly slowed now. Mrs. Green's words make me think of the countless comments we get under our YouTube videos, comments like:
You can do this, Ramona! Have faith!
If anyone can beat Krabbe, Moonie can.
You're so strong, Ramona! Keep fighting!
She seems healthier than in the last video. Keep your chin up, Mama.
Getting better every day! Pretty soon Krabbe will be a thing of the past!
If anyone can appreciate the positive messages, it's me. But in circumstances like Ramona's, it's hard.
The truth of the matter is that there is no coming back from Krabbe. There is no fighting it, there's no getting better, there's no overcoming it. And the onslaught of these comments from people who don't know any better only rubs salt in the wound of knowing that it's untreatable and unbeatable.
I never respond to them, because I don't know what I would say. Just like I didn't know what to say to Mrs. Green. What can you say? Don't wish my child well, because it's not worth it? That's horrible. I would never say that. But still, their misplaced hope makes me want to lash out and force them to come to terms with the fact that Krabbe is here to stay. Why should they feel hopeful while I stare down the inevitable every moment of every day?
…
When Jackson gets home, Ramona and I are still outside. We're in the hammock, her body overtop mine, the back of her head resting against my sternum. I keep her close with both arms wrapped around her waist, as she's still floppy and limp. At least she's relaxed, though. We've been watching the leaves and listening to them rustle for over an hour.
"Hey," Jackson says, untucking his work shirt as he comes to meet us. "I looked for you guys inside. No wonder you're out here, it's a nice day."
I smile as I turn my head to look at him. He bends at the waist and drops a kiss to my forehead, then Ramona's. "You're home," I say.
"Your lip," he says, touching it carefully. "What happened?"
"She bumped me, it's fine," I say. "We had a hard morning."
"Geez," he says, ghosting his thumb over it again. "Did the day get any better?" So we're at eye-level with each other, he sits on the ground next to the hammock.
I shake my head no. "If anything, it got worse," I say. "I was going to try and have her make a finger paint project for you today, but she wasn't up for it. So, I did it."
I pull a sheet of paper from beside me, the paint now dry. With my finger, I painted a big red heart and scrawled J + A as neatly as I could in the middle of it.
He chuckles as he takes it from me. "Thanks," he says. "It's great. I love it."
He looks at it for a while - admiring what, I don't know. I crafted it hastily in under a minute, holding a catatonic Ramona with one arm and using the other to paint. I wanted at least something to come of this day, even if it was something as small and silly as a finger paint picture made by an almost 30-year-old.
"So, today… what happened?" he asks. "I'm really sorry I wasn't here to help."
"It's fine," I say, stroking Ramona's hair. "We made it through."
He reaches over and dabs Moonie's chin with his shirt, cleaning the drool off. At this point, my skin and shirt are wet too. I'll have to change when we go inside.
"This morning, she was having really bad muscle spasms. She was crying, sometimes screaming, there was nothing I could do. I felt awful, Jackson. It was really awful." He nods sympathetically, eyes cemented on his daughter. "The only thing that helped was the leg thing. You know, her leg bounce thing?" He shakes his head, so I say, "You don't remember? She's done it before."
I find the camera that was under my back and pull up the video. I hear the sound of my own voice and watch the screen as it plays what I saw in real-time earlier. Ramona lies there, staring upwards, bouncing her legs up and down in her own personal rhythm. Jackson watches the camera pan to her trancelike expression, and he looks troubled. His eyebrows are knitted together with concern.
"It's the only thing that would calm her down," I say. "She found it on her own."
His face still reads strangely, and he doesn't respond. His eyes are still on the camera even though the screen is black now.
"What is it?" I ask.
"I don't know," he replies. "Just… there's something not right about that. Something's off."
"It's fine," I say. "She was soothing herself."
He shakes his head again, his lips forming a firm straight line. "I don't know," he repeats. "Her demeanor completely changed. You said she's been like this all day? Ever since then?" He glances at Ramona where she lies on me, boneless and content - or so I thought.
"Yeah," I say. "But she gets like this some days. Tomorrow will be better. Jackson, you're not here all day with her like I am. She has days like this."
He chews the inside of his cheek. "Something's wrong," he says.
"How do you know?"
"I don't," he says. "But are you sure that something isn't wrong? April, look at her."
"I've been looking at her all day!" I say, trying to keep calm. I tighten my arms around Ramona and pull us both up to a sitting position, then a standing one. Jackson gets up, too.
"Has she eaten? Gone to the bathroom?"
"I changed her Pull-Up an hour ago. Would you like to check again?" I snap, then hear the sound of my voice. "I'm sorry," I sigh, throat constricting with the onset of tears. "I tried to give her water this morning and she wouldn't take it. It took until 3pm to get an ounce of food in her."
"It's okay," he says softly, cupping my jaw for a moment. "Let me take her. You need a break, baby."
"No, I'm fine, I-"
"April," he says. "I can take her for half an hour, I promise. Go upstairs, take a shower, get in your comfy clothes."
With a trembling lower lip, I hand Ramona over and she settles against Jackson's chest much in the same way she'd been settled against mine. "Okay," I murmur, kissing our daughter's cheek once Jackson has her. I sniffle and look at him, wiping beneath my eyes as I do. "You think we should call the neurologist?"
"Yeah," he says quietly, eyes on Moonie's face as he speaks. "I think that's probably a good idea."
…
Ramona's neurologist, Dr. Capezio, gets us an appointment the very next day. It turns out, the leg bouncing wasn't Ramona comforting herself. It was seizure behavior.
Dr. Capezio explained it to us calmly and as simply as he could. Seizures aren't uncommon for kids with Krabbe, which we knew. But we hadn't seen it coming. I cried and said that it was silly not to see it, but he assured me that I was wrong. With Krabbe, it's impossible to know what's around the next corner.
Ramona was prescribed anti-seizure medication, which we pick up in silence from the pharmacy after the appointment. I glance at Ramona in the rearview mirror, and she's watching the pharmacist through her window as she talks to Jackson. She's more alert today - not chatty, but present. A little fussy, thanks to the little amount of sleep she got last night. Because she barely slept, we didn't either. Which means that none of us are in the best mood. That fact only perpetuates the thoughts swimming around in my head.
Yesterday, of course I knew that she was suffering during the spasms. But she had a seizure in front of me and I didn't even notice. I thought that her behavior was positive. Jackson noticed, and he doesn't witness the effects of Krabbe half as much as I do. How did he see it, but I didn't? I can't help but feel like I let her go through it alone. I didn't even know it was happening.
"Hey," Jackson says as we pull out of the drive-through lane. He sets a steady hand on my knee and gives it a squeeze. "She's okay."
I nod shakily, without much conviction. I stare at his hand, the veins along the top that I always trace, and he squeezes again.
"She is," he says. As if to prove it, he looks in the rearview and says, "Moonie, you good?"
"Hi, Daddy," she says, thumb in her mouth.
"Hi, honey," he says, then reaches back to pat her calf. "She's okay," he whispers to me, then kisses my cheek. "We're all okay."
I keep my head low and watch teardrops fall onto my jeans, creating dark little circles every time I blink. "This wasn't supposed to happen," I say quietly.
The seizures, the suffering, Krabbe. None of it was supposed to happen. But the bigger truth of the matter is that this - this in general - wasn't supposed to happen, either. I wasn't supposed to be able to get pregnant, thanks to endometriosis and scarring from surgery I had when I was 20 to remove excess tissue. It was never supposed to happen for me, but it did.
FOUR YEARS PRIOR
I never stop thinking about the baby growing inside me. The baby I was never supposed to be able to create, let alone carry. But me and this little thing have been together for more than 12 weeks now, which is something.
Termination did cross my mind. I have to admit that it did. But given the fact that my chances of getting pregnant again are so slim, the last thing I want to do is get rid of this baby - this miracle child who I never thought I'd see. I've always wanted to be a mom. Just because it's happening a little unconventionally, with a guy I barely know, doesn't make it any less magical.
I've known Jackson for less than six months. We slept together the day after we met outside of my townhouse and started dating shortly after. It's undeniable that we have insane chemistry, sexually and otherwise, but chemistry doesn't make good parents. I have no idea what kind of a father he'll be, or really what kind of a mother I'll be when it comes right down to it. I have no idea about anything. The only thing I know for sure is that I'm having his baby, and we're stuck together now. At least, for the next 18 years.
We may not have known each other for very long, but he does know what I like. He knows I love the spring and he knows I love Winnemac Park, which is why he took me here today. I'm wearing my favorite blue dress with the little flowers, and I took my shoes off as soon as we got to the water.
I pull him towards the stream and dip my feet in, smiling as he follows me. "You're getting in, too?" I ask, the water only reaching my ankles. In the past, my previous boyfriends would never do stuff like this with me. They'd watch from afar, sometimes laughing, but never join in.
"I'll follow you anywhere, you know that," Jackson says, which makes me smile.
When I found out I was pregnant, I didn't wait long to tell him. I waited about five minutes, actually, because I was in shock. He was, too, for a while. I think we probably still are. It's not something we talk about often, but I'm guessing that will change as soon as I start to show.
"The water's freezing," I say, going a little further as it reaches my shins. I head towards the middle, where the current is strongest, and sway as I slip on a patch of moss. "Whoa!"
"Careful," he says, closing the distance between us in no time at all. He picks me up around the waist and I bend my knees to lift my feet out of the water, giggling as he spins me around and sets me back on dry land.
"Race you," I say, leaving my shoes where they lie on the bank.
Before he has a chance to answer, I start running. "To where?!" he calls after me. I'm too far ahead to do anything but laugh, though. "April!" he shouts.
"You're falling behind!" I taunt lightly, picking up speed as I sprint through the grass, headed towards the bridge.
He doesn't respond. A moment later, I feel his arms latch around my waist to stop me in my tracks. He swings me upwards into a cradled position and I throw my head back, laughing so hard that I can barely catch my breath.
"Got you," he says.
"Cheater," I breathe.
He sets me down and kneels to tie his shoe, but when he's done, he doesn't get up. I stand there watching him, and he watches me, and I don't know what's happening until the moment is directly upon me.
"April…" he says, and his eyes are sincere and so full of feeling. "I know we're doing things a little differently, but I love how different you are. I love how you make me feel. I love you." He takes a deep breath and pulls a small velvet box out from his jeans pocket. "Will you marry me?"
A part of me wonders if he's asking because we're pregnant, maybe because he feels like he has to. Because the thought crossed my mind, too, when we found out.
But I don't let that negativity linger. I brush it away as I brush my hair out of my eyes, and I tell him yes.
PRESENT
When we were at the neurologist's, he did a few other tests on Ramona and discovered something else - her eyesight is getting worse. We have an appointment with the optometrist next week where we'll increase her prescription, but I'm not stupid. I know this will only keep progressing, and one day the effects will reach a speed that we can't keep up with.
I pencil the appointment into the family calendar on the wall and listen to Jackson talk to Moonie as he makes dinner. "Should we read a book while our pasta cooks?" he asks. "I think we got one in the mail from Gamma Cat today."
"Daddy can read," Moonie replies, which makes me smile. Such a simple sentence, but it's the longest she's strung together in two days.
I wander into the kitchen and sit at the counter next to the high chair. Jackson leans forward onto his elbows, making quick eye contact with me before he starts, and I listen along with Ramona.
"This is called 'Before I Leave' by Jessixa Bagley," Jackson says, opening the brand-new book. "Should I start, Moon?"
"Start," she says.
"I found out we're moving," Jackson says, eyes on the page. "Mom said I needed to pack. She said you can't come with us. And I don't want to go without you. Before I leave…"
I intertwine my fingers and crack my knuckles - hard. Jackson's breath stutters a bit, too, but he continues.
"Let's play!" he says. "One last time, like nothing is changing. I'll miss my old home, but Mom says our new home will be great. I'll miss you and the fun we have together."
He turns the page, clears his throat, and shows Moonie the pictures.
"I'm scared to go," he says. "But you say it will be okay, and you'll see me soon. But I'm not so sure."
"He is moving?" Ramona asks. I'm so happy to hear her voice, I'm so happy that she's talking, but right now I can't look at her. Why would Catherine send us this book? Did she read it before she mailed it? Does she have any idea what it's saying to Jackson and me?
Jackson nods, and continues. "You seem so far away," he says, flipping the book to show Ramona that the little hedgehog unearthed photos and drawings of his best friend. "Until I unpack. And there you are!"
Jackson closes the book and forces a curt little smile. Moonie asks, "Again?"
I pull the book close, though, and tuck it under my armpit. "I don't think I like that book very much," I say. "Maybe let's read 'Dear Zoo' or 'Rainbow Fish.'"
I expect Ramona to object, but she doesn't. Instead, she says, "Okay, Mommy."
…
Later that night, I'm in the bath with Moonie, which is her favorite place to be. Her little body is slippery against mine, and I have her cradled in front of me while I sing her favorite song - our song, the one I've been singing to her since the day she was born - Sing to Me by Jhené Aiko.
"Moonie girl did you know that you used to live in my tummy… Moonie girl did you know, I'm in love with being your mommy…" I sing quietly, my cheek pressed to the side of her damp head.
She leans against me as I continue to hum and wash her hair, completely calm and serene. I hope she'll stay this way and get a good night's sleep, because we all need it.
After Ramona is clean and dry, wrapped in one of my big, pink towels, I set her on the bathroom counter and hand over her toothbrush with a drop of toothpaste on it. Brushing her own teeth is usually something that she takes pride in, but as she lifts the brush up to her mouth tonight, she struggles. Instead of placing the brush in between her lips, it hits her cheek and smears toothpaste there.
She tries again, and the same thing happens. After the third try, she starts to get frustrated and in order to avoid a meltdown, I take her wrist and gently guide her movements. "It's okay," I whisper, making sure to get every last baby tooth. "It's been a long day. You're just tired, Moon."
I carry her out of the bathroom cradled in my arms and dress her in pajamas, then tuck her into bed. Luckily, tonight, there's no fight - not from Ramona's physical body or anything else. She falls asleep as soon as her head hits the pillow, and after I set her hearing aids on the bedside table, I tiptoe out of her room and head into mine and Jackson's.
"Out like a light," I say, crawling into bed beside him. He has the laptop open and is staring at the screen intensely, reading. When I peek over his shoulder, I see that he's looking at an article about Krabbe. "Jackson…" I say, averting my eyes. "They tell us not to google."
"I know," he says, tearing his gaze away. Reluctantly, he shuts the laptop and turns towards me. We both lay down and face each other, and I can read the look in his eyes just as well as I'm sure he can read mine.
"Jackson," I whisper. "It might not be that long before she can't see."
He closes his eyes for a long moment and takes a deep breath. "I can't talk about it right now, Abey," he says, using the weird little nickname he's called me for almost as long as we've known each other. It started as Abey-Baby, then became anything else he can think to morph it into.
"I know," I say back, just as softly. "I'm sorry."
"I don't know why my mom had to send that book," he says. "I was going to stop reading, but I didn't want her to know something was wrong. I mean, the subject wasn't right on the nose, but… I just… it made me think about…"
I scoot closer to rest my head on his chest. "I know," I say. "I didn't like it, either. Let's just donate it."
"Okay," he says, wrapping his arm around my shoulders
I rub his stomach and feel how his breath trembles as he inhales and exhales. I know he's close to tears, so I try and pull him away from that. "Remember the day she was born?" I say, searching for something, anything, to get his head out of the space that I know it's in. "Remember when her head was coming out, and you thought that all that hair on her head was mine? Because I was freaking out that I hadn't shaved?"
He laughs softly, just a little, which I'm glad to hear. "Yeah," he says. "You made such a big deal out of it. She surprised us, you didn't get to trim."
"Not like I could've reached, anyway," I say with a smile. "I was huge."
"You were cute," he says. "I loved that belly."
"I did, too," I say, trailing my fingers in circles around his rib cage. "Remember when we held her? How it felt to actually have her out in the real world?"
"Yeah," he says. "Of course."
"She's the best," I say, reaching for his hand. Once I find it, I twine our fingers together and hold tight.
We spend a while lying beside each other in silence, thinking but not speaking aloud.
…
The next morning, I'm in Moonie's room as she wakes up. She slept in for a long time - it's past 9am - and Jackson is home with us today. He's making a big breakfast, which is everyone's favorite meal, and the house is filled with wonderful smells.
The doorbell rings as I'm picking an outfit for her, and I look up. She's lying on the floor with her legs out straight, feet twitching. It's a normal foot twitch, though. It's a foot twitch I'm used to.
"Should we go get the door, Moon?" I ask.
She doesn't look at me, and it takes me a second to figure out why. I haven't put in her hearing aids yet. I hurry to grab them, then carefully put one in each ear. She blinks when I do, like she's waking up all over again, and I ask the same question.
"Doorbell?" she repeats.
"Someone rang the doorbell," I say. "Let's go see."
I lift her onto my hip and head downstairs to see that Jackson is already standing in the foyer with a package in his hands. "Another one from Gamma Cat," he says. "It feels like a book again."
I look at him over Moonie's head as he unwraps it. He shows me the front - it's called 'Ida, Always' and it has a picture of two polar bears on the cover.
"Let's read the back," I say, and Jackson hands it to me. "Gus lives in a big park in the middle of an even bigger city, and he spends his days with Ida. Ida is right there. Always. Then one sad day, Gus learns that Ida is very sick, and she isn't going to get-" I stop reading suddenly and set the book on the bench near the door.
"Mommy keep going," Ramona insists. "Not done."
I blink hard and ward off tears. Jackson is staring at the book where it sits with a dazed look in his eyes. I don't know what to say, so I break the silence with the only thing I can think of.
"Who's hungry?" I say, trying and failing to sound excited. "I think Daddy made breakfast."