by Susan Haas
My memory before age two is a different story. It’s not a totally blank page, but it’s pretty close. What I do “remember” from before age two is mostly fake: stories my family has told over and over until they seem real.
One is about the morning after I was born. It was early spring in Charlottesville, Virginia. While my parents filled out discharge papers, my five-year-old brother, Tucker, stole my hospital bassinet. He drove me—a yellowed, wrinkly, and seriously uncute newborn—around the maternity ward like he was a NASCAR driver. A nurse ran after him saying, “That’s not safe, young man!”
For years, this was the only story I ever heard about my birth. There were plenty of stories of the other kids, my four older siblings. When we sat around the dinner table and my parents talked about our earliest days, there was documentary-level information about everyone else’s births. Just not mine.
I had one other fake memory. This one was about Luke, the yellow lab we had when I was a kid. Luke was the only dog I’ve ever known who had his own pet, a cat we affectionately named The Cat. I was only a year old when Luke got his cat, but my family told that story so often I could picture it.
We were visiting my grandparents in Georgia when Luke found a pile of greasy wrappers behind a dumpster. He sniffed the pile—and it jumped. The wrappers fell away, uncovering a tiny gray kitten. Luke lay down and licked that kitten top to bottom. The kitten must have decided that Luke was his mother because he pushed his paws back and forth on Luke’s belly and tried to nurse. From a dog. A boy dog.
Mom was not a cat person, but even she couldn’t say no to their sweet friendship. When we left for home the next day, the kitten came too. After a couple of days, Luke had licked away the kitten’s buttery coating. When that was gone, he completely lost interest.
The kitten grew into a cat. By the time my memory came in full-on a year later, The Cat was a cranky little monster with mommy issues. He spent most of his day outside hunting mice and terrorizing neighborhood birds. But when Luke came back inside from a walk or pee break, The Cat would race inside behind him. He would try to nurse, and when that didn’t work out, he’d find a spot nearby to watch Luke. The Cat was a stalker.
He was also awesome for Active Nonremembering. From my beanbag chair I would make a game of trying to find his green eyes peeking out from behind the TV stand or under a tent of old newspapers. It’s impossible to pay attention to other stuff when you’re hunting a Ninja cat. One hundred-percent impossible.
I wish I could say that the fake memories of The Cat and NASCAR Tucker were all my memories from my first two years. If they had been, everything would have been fine. Chances are, there would have been no Epic Reasoning Fail and no Year of the Buttered Cat. But they weren’t the only ones.
I also had a random collection of broken memories, short snippets of life that for some reason stuck in my brain. And it was three of those memories that started all the trouble.
Snippet #1: I’m lying naked on an exam table in some -ist’s office. Mom’s trying to diaper me, but I’m flipping and flopping like a fish on a boat dock. Finally, Mom throws down the diaper and covers her face with her hands.
A nurse hugs her and says, “Don’t worry. She might catch up.”
Snippet #2: I’m on Mom’s lap, and my family is singing me the birthday song. Dad holds up my cake so I can see the single candle stuck in the middle. My body twists the opposite direction.
My sister, Hannah, says, “Make a wish, Lexi!” and Mom starts to cry.
Dad leans in and whispers, “She will catch up! I promise.”
Snippet #3: I’m propped on pillows on my parents’ bed. Dad is playing his guitar, strumming a jazz tune, “Summertime.” He reaches out and picks up my hand, which pulls back hard to my chest. He gently shakes my arm, and my muscles relax. He pulls my hand forward and strums his guitar. Three times. As my fingers brush the strings he sings, “You’ll. Catch. Up.”
By the time my total-recall memory came in when I was two, no one was talking about catching up any more. It didn’t matter. These broken memories had lodged in my brain, taken root, and grown to a ginormous oak. Don’t worry. I’ll catch up.
If I had had a little brother or sister to watch, maybe I would’ve figured it out sooner, but I was the youngest. I had no idea how a kid learned to move or talk. Maybe everyone started with a body like mine. I just needed to be patient and wait for the delivery of my fully operational body. After all, my memory had magically appeared. My body would too. Obviously.
My body was coming. Soon. It would be arriving any time. Epic. Reasoning. Fail. And I could not let it go.
CHAPTER 3
Age 4, Discoveries
For three years, I waited for the delivery of my body. It did not come. Then the winter before I turned five, I discovered I had a second unusual talent, and for a little while, my focus shifted from something missing to something found.
Twice a week, I went to an “inclusive preschool”—a school that combined kids who walked and talked with kids who were “developing at their own pace,” as they liked to say. But now it was time to start thinking about kindergarten. To help my parents understand our choices, two ladies from the state came to our house to test me.
That morning, Mom let me pick my outfit. I chose sparkly red cowgirl boots and a hand-me-down Spider-Man costume. When you have an older brother who’s bananas for action and fantasy and magic, you get loads of characters and costumes handed down.
When our guests arrived, Luke bolted onto the porch with his tail wagging. The ladies stood up stiff and straight.
“Oh, aren’t you … big,” said one of the ladies.
I tried to wave, tried to move only an arm up and down like I practiced in therapy, but the excitement was too much. My whole body jerked. My leg kicked hard, and when it did, one of the boots flew off, sailing onto the porch. The ladies stared at it, sparkly in the morning sun.
“Please. Come in,” said Mom.
She recovered my boot, then whistled for Luke. He trotted in with The Cat close behind.
The ladies introduced themselves as Roxanne And Betty From The State.
Betty looked me over. “Well, aren’t you the cutest little … Wonder Girl!”
Wonder Girl? I flailed, and my other boot flew off, hitting Betty in the chest. She smiled thinly, handed it back to Mom, and smoothed her blue, wool skirt.
“Spider-Man,” Mom corrected. “She wants you to know she’s Spider—”
But the ladies had already wandered into the den.
Mom blew a strand of auburn hair from her face and positioned me in my beanbag chair. Luke plopped at my feet.
“Are you ready for some special tests, Lexi?” Roxanne asked.
I stuck out my tongue. The ladies flinched.
“Oh, sorry. Tongue out means yes,” Mom said.
Betty smiled her thin smile.
“She came up with that herself,” Mom offered.
“Shall we get started then? You’ll want this in place before summer.” She took out a notepad for herself and handed one to Roxanne.
“First, let’s talk about skills. Preschoolers develop at different rates, but normally by Lexi’s age they can answer questions and follow directions. They run, hop, kick …”
A streak of gray fur darted behind the couch. A second later, a pair of green eyes peeked around the corner. As my imagination heated up, my arms began to tingle.
Green Goblin! I’m sure he’s up to no good. Sorry, Roxanne And Betty From The State. I need to check this out.
If I can fire my web-shooter at just the right angle … Thwak!
Yes! Ceiling fan carousel! Yahooo!
Dismount in three … two … one … now! Double twisting backflip and I’m on the couch, easy peasy.
Green Goblin leaps towards me. “You’ve spun your last web, Spider-Man!”
“Not so fast!”
Thwak!
Betty smacked her notebook against her palm, jolting me from my fantasy. S
he paced the room, stopping every few steps to tug at her skirt or scratch her leg.
“Please understand, Ms. Haas. This coming year is crucial to Lexi’s development. Her motor skills are severely lacking. Her preschool teachers report that she doesn’t interact much with her peers. If you ever want her to be included in school—in life—you need to accept the severe deficits she’s dealing with. The district can’t simply …”
You know you want to scratch your butt. C’mon, Betty, scratch it. Go ahead, Scratch. Your. Butt.
I was working on my telepathy, like Professor X from the X-Men.
I didn’t care one nickel what Betty From The State thought I needed. A few weeks earlier Mom and I had made one of those closed terrariums from an empty jam jar. We put in dirt and moss and stuff then sealed it up. We didn’t have to add anything to that jar, not even water, and everything in it was growing—thriving, Mom had written with me in a notebook.
Well, it was thriving until Luke chased The Cat, and The Cat knocked it off the table and smashed it to smithereens. Anyway, my house plus my family made my terrarium. They were all I needed to thrive.
“I think Lexi can read,” Mom blurted.
“What?” Betty asked, blinking.
“Read. I think she can read.”
Betty walked over and stared at me, like she was peeking inside an abandoned house to see if it could be salvaged, if it was worth saving.
“What makes you think that?”
Mom pointed to an old metal cookie sheet filled with plastic magnetic preschool letters. Before I was even a year old, if Mom held my body tight and my wrist steady, I could drag letters around that sheet and spell. It was my favorite game, so we spent hours every day learning new words.
Betty picked up the cookie sheet. “Lexi, can you spell your name for me?”
I stuck out a shaky finger and slid Lexi to the bottom.
“How about cat?” asked Roxanne.
cat
I smiled. Bring on those special tests.
After a few rounds of baby words, Mom interrupted. “Lexi, spell ‘there’ as in ‘There it is’.”
there
“Spell ‘their’ as in, ‘This is their ball’.”
their
“How about ‘they’re’ the contraction?”
theyapostr
“Whoops! You’ve got off track. Let’s try again!” Roxanne said, and she reached toward the letters.
Mom stopped her hand. “Let her finish.”
theyapostrophere
The ladies frowned. Mom separated the letters a little.
They apostrophe re
“Umm … no punctuation in the starter set,” Mom said, smiling.
Betty closed her book, crossed her knees, then uncrossed them. She tapped the notebook with her pen. “Ms. Haas, we don’t have proper tools to measure this child’s intelligence, but clearly she is very, very bright.”
“Special,” I wanted to say, but I could only grin and drool.
“It’s highly unusual for a typical child to have language skills like these at her age,” Betty said. “But for a child who can’t talk, a child with such obvious physical deficits …”
C’mon, Betty. Go ahead. Scratch. Your. Butt …
That evening as I lay in bed, I could hear the soft hum of my parents’ conversation in the room next door. Over the years, I had learned to pick up classified information by listening through the wall. Most nights, all I heard was Dad strumming his guitar before bedtime, but once in a while, I heard more. I was proud to be the first kid to know our grocery bill was gonna put us in the poor house, wherever that was. And the time Tucker tried to bring home a neighborhood cat, I was first to know that thank God it turned out to be our neighbor’s fully vaccinated house cat.
And that night, after the kindergarten transition meeting, I overheard Mom say, “With her skills, I just don’t think regular school is an option.”
Soon after, I started homeschool.
All my siblings had been homeschooled at some point or other. Most homeschooling families in Charlotte wanted a Christian education that they couldn’t get in public schools. But that wasn’t us at all. Mom always said we just needed other stuff we couldn’t get in public schools.
Kali and Kasey had eventually gone back to regular school, but Hannah and Tucker were still at home. Adding one more kid at the kitchen table wasn’t a big deal. School was easy for me, and by summer vacation that year I was ready for second grade.
I started the summer of my fifth year overflowing with confidence. This would be the year my body would be coming in. Obviously. My memory and language skills were my super powers. Once I got my body and my voice, life would be amazing. What could go wrong?
CHAPTER 4
Age 13, 22 hours until surgery
I’m gonna let you in on a secret. There are times that I’m glad people can’t understand me. And this is one of them.
New nurse has tried eight times to hit the vein for my IV. She started with my right hand, and now she’s fishing around in the left. I’m huffing out curse words every time she shifts the needle. She has no clue I’m swearing.
Dad snorts, because he knows what I’m saying. Mom usually gives me the stink eye when I curse, but this time she doesn’t. She holds my arm steady, and I can see her grimacing.
Finally, she closes her eyes and says, “Please go find someone who can hit her vein.”
New nurse pulls out the needle, mumbles an apology, and disappears around the curtain.
Dad holds up his phone. “So, do you want to answer Claudia in New Hampshire?”
Mom pulls out my old cookie sheet. Yeah, that cookie sheet. It’s mega embarrassing, but when I’m wiped, I can’t talk any other way. Back home, I have a computerized communication device, but I still don’t have enough muscle control to use it for talking.
Mom sits me up and holds my wrist. I extend a shaky finger and drag letters until it reads: My real friends will understand.
That’s all I can manage. I slump onto her shoulder.
Dad’s phone pings so I know he sent the message.
Dad is my “official” social media liaison. Six years ago, before my first surgery, Mom and I were away a lot with appointments. Dad had to stay in Charlotte to work and watch my brother and sisters, but here’s the thing—my dad is not a bystander. He had to do something, so he set up my website and Facebook page.
Soon after, the media started. I was the first person ever with my condition to have this procedure, and the world loves firsts. There were stories in the local news, then the national news, and before long, there were thousands of people all over the world following my progress.
The thing about this procedure is that it unfolds slowly, like a lopsided three-act play.
First act is surgery. It has nearly all the drama, but it’s over in a day.
Second act is recovery from surgery. Ten days with fading action.
Third act gets most of the stage time, but it’s the part where you fall asleep and then clap politely when it’s over. Act three is programming the stimulator so it sends the right set of instructions to my brain. Changes are made a little at a time, so this part can take months—even years.
The totally insane thing is that even after waiting years for the curtain call, my audience never left. My Facebook “friends” have continued watching and cheering me on. Usually, my social media … ummm … presence—yeah, I guess that’s the word for it—usually, it doesn’t bother me, but sometimes, I just want to be a regular kid. Even a regular disabled kid.
A different nurse pokes her head into my cubicle. This one doesn’t have a needle in her hand, and she doesn’t make a move in my direction.
“I just wanted to give you a head’s up. There’s a delay for the MRI. We have a baby with a CVA who’s been triaged, so sit tight. We’ll keep you posted.”
The nurse leaves, and Mom shakes her head. “A baby with a stroke!”
At stroke, I jump. Gus shifts to
hold me down.
“How heartbreaking for those parents! At least they’re in good hands.” She pauses then adds, “They can’t hit a vein, but this hospital knows how to butter the whole cat.”
Dad and I laugh because we know what she means is, “This hospital goes above and beyond.”
I stare into Mom’s eyes and open my mouth wide.
“I’m sure you’re hungry and thirsty. As soon as we’re done, you can get whatever you want from the cafeteria. But you know the hospital rules.”
I know, I know. Nothing to eat or drink before they knock you out.
They’re gonna put me to sleep to take pictures but keep me awake for surgery. How messed up is that?
“Why don’t we text the kids and let them know what’s going on,” Dad says. “What do you want to tell them?”
I know he’s trying to distract me by messaging my brother and sisters, but I won’t bite. I stare at him with my open mouth.
He types something then reads it out loud. “‘The MRI is delayed because of an emergency. Lexi wants you to know she’s starving.’ Is that okay?”
I stick out my tongue.
After a few minutes, Dad’s phone pings again, but this one is a little different from the Facebook ping. Dad is a gadget freak and has worked out different tones for texts, emails, and Facebook messages. And this one is the text ping.
He holds the phone so I can read it.
It’s my oldest sister, Kali: Sorry, Lex! That stinks!
Another text pops up. This time, it’s my second oldest sister, Kasey: Bummer! Make Mom and Dad get you a nice lunch to make up for skipping breakfast!
Now one from Hannah: Try to think about something else. Any cute male nurses on the floor?
I laugh at that and wait for the fourth ping. And wait. Always late to the party.
After a few minutes, it finally comes. Tucker has sent two pictures. The first is of his breakfast of eggs, toast, and fruit. The second is of him, eating it.