The Space Between Lost and Found, page 1
To my mom
Also by Sandy Stark-McGinnis
Extraordinary Birds
CONTENTS
Chapter One
Chapter Two
Chapter Three
Chapter Four
Chapter Five
Chapter Six
Chapter Seven
Chapter Eight
Chapter Nine
Chapter Ten
Chapter Eleven
Chapter Twelve
Chapter Thirteen
Chapter Fourteen
Chapter Fifteen
Chapter Sixteen
Chapter Seventeen
Chapter Eighteen
Acknowledgments
1
This morning I make Mom breakfast, shaping Ritz crackers as close to dolphins as I can. The fins—dorsal and pectoral—and the fluke are hard. The rostrum is, too. I use some Easy Cheese for an eye and for the spots. The dolphin will be a pantropical spotted dolphin. Mom loves dolphins, and she loves Easy Cheese, so there are lots of spots, as many as I can fit.
“Do you want coffee or water? Or do you want something else to drink?” I ask, grabbing a cup from the cupboard.
“Something else.”
I open the refrigerator. “We have milk and root beer.”
Mom pushes one of her fingers into a single swirl of cheese, lifts it out, and looks at it like it’s some strange, new thing before sticking it in her mouth. “That’s good.”
On the counter, I line up the gallon of milk, the twelve-ounce bottle of root beer, and a glass of water so she can see all her choices. “Mom, do you want water, milk, coffee, or root beer?” I ask again.
“I’d like something else,” she says.
Mom’s doctor explained her illness to Dad and me like this: “Let’s say you’re trying to connect two pieces of paper together with glue. The pieces of paper are brain cells. On the spot where you need to attach them, there are patches of sand and dirt. And when you try to glue the papers, they don’t stick.”
Another way to explain it is that between my mom’s brain cells, fatty tissue has grown, and that fatty tissue prevents the brain cells from connecting.
At the beginning, there were lots of signs she was getting sick: forgetting where she put things, not being able to follow a conversation, not being able to see to the side of her when she drove. One day, she pulled out in front of another car and caused an accident. No one was hurt, but a couple of months later, she quit her job and turned in her driver’s license.
She said she was afraid she was going to hurt someone. She said, “What if I hurt Cassie taking her to school?”
I decide to give Mom root beer and start eating my breakfast, peanut butter on toast.
“Bottlenose dolphins can swim up to twenty miles an hour.” Mom bites half a cracker. “They can travel almost eighty miles in a day … The ocean really is beautiful.”
She’s staring out the window when she says this, and I’m not sure whether she’s mistaking our desert for the ocean, but if she is, it’d make sense. Both are open, deep, and filled with the unknown. Humans are like that, too.
If I had to compare my mom’s sickness to either the ocean or to the desert, it’d be more like the ocean. The ocean is an abyss. Like, I could picture myself getting lost in the desert and finding my way back (our desert, at least), but if I ever got lost in the ocean, it’d be harder to find a way home.
The abyss is Alzheimer’s disease, and Mom has what’s called “early onset.” Most people with Alzheimer’s get it when they’re the age of grandparents or great-grandparents, but Mom is still pretty young, and the doctors say the loss of memory goes faster when it starts early. So time is a big deal. That’s why I give Mom root beer and make her Ritz with Easy Cheese for breakfast.
“I wish I could swim in the ocean right now.” She eats her last cracker.
I take my plate to the sink. “How ’bout swimming in a pool?” Later, I’ll ask Dad if we can take her to the fitness center and let her swim.
She turns away from the window, back to me. “No, the ocean. You can swim with me. But you don’t like to go in deep, do you?”
I take Mom’s plate. “No, but I’d go with you, and I might try.”
“We’d swim away.” Mom grabs my hand, a little too tight. I know she doesn’t mean to.
If Dad were here, he would say, “No, you don’t want to swim away. You want to stay here at home.” He’s good at not giving in to Mom’s sickness. That’s how he keeps going. But I think if imagining herself swimming in the ocean takes her to a different place, somewhere other than here, where she’s losing pieces of her memory every day, then that’s okay. It gives me comfort in a weird way. It means she’s not thinking about what’s happening to her.
I put away the Easy Cheese and peanut butter. When I close the cupboard, I hear the front door open. It can’t be Dad; he’s still getting ready for work. And Mrs. Collins usually yells, “Good morning,” as soon as she comes into the house.
I look over at the table, and Mom’s not there.
She’s reached the sidewalk by the time I catch up to her. “Where are you going?” I ask.
She takes a drink from the bottle of root beer. “I’m just taking a walk,” she replies. It’s a normal thing to say, the most normal thing she’s said in a long time. “I just feel like walking.”
So that’s what we do. We walk down the road. The mornings are still cold, and I realize I didn’t have time to grab a jacket. Neither did Mom. Or she didn’t remember. “Are you cold?”
“No,” she says. “Are you?”
“A little.”
“We can walk faster so you can get your blood flowing a little more.”
When we get to where the road ends and the desert begins, Mom stops and looks out at the space and the mountains. She folds her arms in front of her chest and takes a deep breath.
“Dolphins,” she says, still thinking about the ocean, “can remember sounds. If one of the dolphins from a pod has gone away from the group and doesn’t return for years and years, the others will still recognize her sound. They’ll remember. Scientists used to think it was elephants that had the longest memory in the animal kingdom—besides humans—but they discovered dolphins can remember even more.”
If what she says is true, maybe Mom should go to the ocean and join a pod of dolphins. She’d live with them for so long, she’d turn into one, and maybe her memory would get stronger again.
She steps off the road and onto the desert floor, walking a few steps forward. “Is it supposed to snow?” she asks.
“It could. It snowed in April last year.”
“It feels like it will soon.” She glances at the cloudy sky.
“Should we try to touch the mountains today?” I ask, because this is the question she’d always ask me before she got sick. From here, the mountains have always looked closer than they actually are. We reach out and try to touch them. Our hands, together, floating in the air, is another moment of normal. She smiles. Her eyes are far away, though, which is a reminder that things aren’t really “normal” at all.
“The desert’s beautiful,” she says. It is.
She turns back, staring at me like I’m the sky. “I know you’re my daughter. But I can’t remember your name.” She holds my face in her hands and presses her forehead against mine, staring into my eyes, searching for “Cassie.”
She’s been forgetting names of things a lot lately. Like, she’ll know a brush is used for fixing your hair but can’t remember the word to identify it. Last week, she asked me, “What is that thing you use for writing?”
I found a pencil and a pen. I held up the pencil and said, “This is a pencil.” I held up the pen and said, “This is a pen.” Mom chose the pen, and then I helped her make a grocery list for Dad.
When she can’t remember the name of something, she describes it to me. “It’s a vegetable. It’s green. It looks like it has short, dark green hair.” Broccoli.
My name is like “pen,” “pencil,” “broccoli.” Except it’s not.
I almost say, “This person loves art. She loves to go on hikes. She loves you.” But I don’t. I can’t.
“I’m Cassie.” I barely get out the words.
Cassie, I think. You used to say how beautiful it was. You used to tell me all the time. And now she can’t remember it.
A tear rolls down my cheek. The wind, shaking sagebrush across the desert floor, feels colder. My throat hurts. It’s trying to hold the sadness away, sadness mixed with anger, mixed with a wide-open feeling that there isn’t anything I, my dad, or even the doctors can do to stop my mom from losing herself. Her memory is like the desert in front of us, formed by tiny particles of mountain broken down into smaller and smaller pieces, becoming sand, then pieces of sand breaking down so tiny, they don’t exist anymore.
Except, in the desert, it seems like there are always more pieces of sand to replace those that are lost. Once Mom loses a memory, it sometimes doesn’t come back. So the chances of her ever remembering my name again aren’t good.
“Isn’t it beautiful?” she says again.
No. Nothing is beautiful. How can she say that when she can’t remember my name? My name is beautiful, remember? She’s the one who gave it to me. How could she forget?
I want to scream across the “beautiful” desert, but I have to remind myself that Mom can’t help what’s happening to her.
I take a deep breath,
“See.” I press myself against her and feel her warmth, erasing the cold wind for a second.
I’m hoping she’ll read the word, but instead she takes a last drink of her root beer and kisses me on the nose. “I love you.”
That should be enough. I love you.
But on the way back to the house, I can’t help but repeat “Cassie” over and over again, the rhythm of my name dictating our steps.
Saying it out loud probably won’t help her remember my name. But I need to hear it. Sometimes I need help, too.
“Cassie.” Dad’s waiting for us inside the doorway. “Where did you go?”
Mom slips under his arm into the house and leaves the empty root beer bottle on the porch.
“Mom wanted to go for a walk, and I followed her.”
He doesn’t like that answer. “I’m going to tell you again. We can’t let her walk out the door on her own. It makes our lives harder. Okay?”
I nod. I agree that Mom escaping and going outside does make our lives harder, but I can’t blame her for wanting to escape.
I get that he’s afraid. I am, too. But our fears have different degrees, different angles and values when it comes to Mom. I’m afraid we won’t have time to do and say everything we need to before we have to say goodbye.
Sometimes Dad’s fears really have to do with how people would react to Mom if we did take her places, but he says he’s just focused on keeping her safe.
This is the complete opposite of our life before Mom got sick. We would go places all the time, hiking, camping, taking trips to the beach.
“We just went for a walk, Dad. That’s all. I stayed with her the whole time. Everything was fine.” I grab the root beer bottle and go to my room.
I shove the bottle and my math book into my backpack. “Cassie,” I whisper. “It’s Cassie.”
On a shelf, there’s a container with small plastic dolphins that Mom gave me last year for Christmas. I grab three, not caring what kinds of dolphins they are, and shove them inside my jeans’ pocket.
There’s a knock on the front door. “Good morning!” Mrs. Collins says.
It’s not a good morning.
On the way to school, it starts to rain. The radio plays; Dad’s listening to the news. I swear I hear the newswoman say, “Up next, a story about a woman who can’t remember her own daughter’s name.”
Mom was the one who used to drive me to school and pick me up. I miss my rides with her. She was good at making the twenty minutes fun.
“So,” Dad says, “do you want to have spaghetti for dinner tonight?”
“That’s fine.”
“Spaghetti’s your favorite.”
“It is.”
From the car window, I can see the mountains. They’re a shade of red, like the ones Georgia O’Keeffe painted. I’ve been saving my money to go to Santa Fe and visit her museum. It would be nice to get lost in her red cliffs and The Lawrence Tree or hide behind cow skulls or inside one of her sunflower paintings.
Dad pulls up in front of Desert Valley Elementary School. I get out, lift my too-heavy backpack from the back seat, and close the door.
“Cassie?” He says my name like a question. He’s been doing this a lot since Mom got sick. I get it, though. I feel unsure about a lot of things now, too. Questions and the unknown are our new normal.
I lean against the open window.
“Is something wrong?”
“No.”
“Okay.” Of course, Dad knows there’s something wrong, something besides just Mom, and he says okay because he thinks if he doesn’t pressure me about it, I’ll be more likely to tell him. But I don’t want to say anything. He has enough to worry about.
“Have a good day,” he says.
I wave goodbye. A “good day” would look like this: walking through the door when I get home and Mom saying, “Cassie, did you do your homework?” or, “Cassie, please
clean up your room,” or, “Cassie, will you take out the garbage?”
Or just, “Cassie.”
SWIMMING THE ENGLISH CHANNEL
The wind is perfect, and we’re the only ones on the beach.
“You ready to run?” Dad asks.
Mom gives me the reel. “You’re ready.”
But I know how much she loves to fly kites. “You first.”
“Together.” She grins and takes my hand.
Behind us, Dad holds the kite in the air. “You’ll go on three.”
Against my feet, the sand is cool. I usually look ahead and try to listen to Dad give directions, but Mom runs with her eyes on the kite. I don’t know how she does it. Lots of practice, maybe? Or a trust that her feet are going to land where they’re supposed to, even if she isn’t focused on planting them with each step.
“Let’s give it some slack, Cassie,” she says.
I roll more string out from the reel and try to look up at the kite, too. My feet stumble a little, and I fall, letting go of the string on my way down. Mom holds on and keeps running.
“You okay?” Her voice travels down the beach.
“I’m fine.” I am, except for a little taste of sunscreen in my mouth. (Mom says, with our pale skin, we need to be extra careful.) I don’t bother getting up and open my eyes to the sky. There’s no sun to shield them from, and I can watch the clouds. They’re moving fast today.
Pretty soon, her shoulder is right beside mine. “Okay, what ocean animals do you see?” She points up at one of the clouds, to the left of the kite, still flying. “That’s definitely a stingray.”
I can’t make out the outline of a stingray at all. “I don’t see it.”
“Keep looking. It’s there.”
I try to find it but can’t. “You know, the truth is, I usually can’t find half the things you say you see in the clouds.” I laugh.
“Well, Cassie.” Mom raises up on her elbows, leans over, and gives me a kiss on the cheek. “The truth is, I make up half the things I say I see in the clouds.”
I smile. “I know.”
She lies back down, grabs my hand, and sets it over her heart, while her other hand holds the reel. “I guess it’s not exactly telling the truth, is it? It’s nice of you to play along.”
“It is nice of me, huh?”
Mom giggles. “I do it for a good reason, and I suppose you know what the reason is, too?”
“Maybe because you want to keep the game going longer?”
I wait for her to tell me whether I’m right, but Dad walks up. “You want me to take the kite?” he asks.
“No, I got it.” Mom stares up at the colors. The kite bobs and weaves with the wind, but for the most part, it stays steady.
Last year in math class, Mrs. Jones, my teacher, asked us if we could identify characteristics of a kite. They’re different colors and different shapes. That’s all I knew. When she started talking about adjacent and perpendicular lines, I understood what she was teaching us, but I didn’t want to think too much about it. Because I like to think of kites the way Mom does: an extension of our arms. With them, we can touch the sky.
“Dad, do you see a stingray in the clouds?” I ask him, pointing to where Mom did earlier.
Mom laughs.
“I know that trick,” Dad says.
The reel of the kite drops onto her stomach, but then the wind scoots it across the beach toward the ocean. All of us get up and run after it. By the time we reach the reel, the kite has tumbled onto the sand, the tide washing over it. Mom picks it up by the frame.
“Not much use now,” I say.
“I don’t know.” She shakes the kite gently. “Let’s dry it out and see what happens. It’s always worth a try.”
“It’s not going to …” Dad stops himself from saying “work” because Mom’s giving him a look. It’s one she gives me when I’m about to complain about getting a B on a math test.
I know what she’s going to say next. It’s her answer for pretty much everything, and she says it in a soft voice that sounds even quieter compared to the waves. “Let’s go get some ice cream. We can talk about how we’re going to get this kite back up into the air over a sundae.”
