Lily Love (7 page)

“It’s okay. Hey, what’s on the seventh floor?”

“Seventh?” Audrey repeats. “That’s Neurosurgery. Why do you ask?”

The image of my stranger standing alone in the halls of Neurosurgery has me swallowing a knot in my throat.

God, I don’t even know his name.

Once upon a time, that was Peter. He stood in the hallway while a surgeon explained how he would seal off a bleeding blood vessel in my brain with a tiny coil inserted through my groin. I was blissfully unconscious, but poor Peter was alert and present for the entire thing.

I wish I could jump back on the elevator and see if my stranger is still there. Instead I plaster on a happy face and answer the nurse.

“Oh, I thought I saw someone I knew getting off on that floor.” I quickly change gears. “How was Lily’s night?”

“We got some really great readings from her EEG.” Audrey smiles encouragingly. What she is really saying is that Lily had several seizures during the night. I’ve gotten good at deciphering medical speech.
Idiopathic absence seizure
: We’re not sure why Lily’s eyes roll into her head, while her head lists forward, multiple times a day.
Encephalopathy Unspecified
: There is something indefinitely wrong with Lily’s brain, but we have no idea what.
Pervasive Developmental Disorder Not Otherwise Specified
: We have no effing clue what’s causing Lily’s disability, but we have to call it something.

“Enough data to shorten our stay?” I ask hopefully.

“Dr. Baker should be by soon, and I’ll be sure she’s aware of what we have so far and ask how much more we need.” Her tone is as gentle
as her manner, and I find myself so grateful. Her compassion and patience make the time here manageable.

“Thanks, Audrey, you’re the best,” I call over my shoulder as I head down the hall to Lily’s room.

The door is cracked open and I can hear the cartoons playing on TV. When I push the door open, Lily is watching
Daniel Tiger’s Neighborhood
through half-mast eyes and Peter is passed out on the bed next to her. They look like two peas in a pod, with their matching strawberry-blond hair and fair skin. My beautiful and broken family.

“Mama, Mama, Mama,” Lily chants, waking Peter.

“Hi, Lily Pad,” I whisper, and lean in to kiss her forehead.

“Hey.” Peter rubs his eyes and gives me his sleepy smile. It’s the first time I’ve seen it since he left two months ago. It still makes my heart flutter, but only for a second. Those automated responses I’ve grown accustomed to are slowly fading. A heart flutter when he smiles, a kiss on the lips to greet him, an “I love you” when he leaves. The knee-jerk reaction has stilled, but I feel its absence like a phantom limb.

“Hey,” I whisper. “Did you sleep at all last night?”

“Not really.” He yawns. “I was in and out. You know how it goes.”

Do I ever. The hospital provides a “sleep chair” that reclines into something resembling a cot. It’s a hard and uneven torture device. Barely passable as a chair, let alone a bed.

“Why don’t you go home . . . uh,” I stammer, “to your apartment, I mean . . . that’s home for you now . . .”

Shut up, Caroline.

“I knew what you meant,” he interrupts my rambling. “I want to wait for Dr. Baker.” I nod and focus my attention on Lily. She’s smiling and singing along with her favorite show.

“Grown-ups come back.” She sings the same line over and over again. I know somewhere in the recesses of her mind, she’s processing my return. She likes to piece together dialogue and songs from her favorite shows to communicate with me. She finds the words she can’t articulate herself by quoting the things she knows.

One day, after she used my mascara as lip gloss, I said, “Lily, what am I going to do with you?” Her response was from something we’d just heard Cookie Monster call himself. “Me-nima.” An enigma. My little echo has her mama’s sense of snark.

I unplug Lily’s EEG monitor from the wall and plug it into a portable battery pack, careful not to tug on any of the wires glued to Lily’s scalp. The two of us take a walk to the playroom and give Peter a little time to clean up. Immediately upon clearing the threshold, Lily makes a beeline for the Sesame Street play set she adores. She plops down on her bottom, with her legs bent away from her body in a position her occupational therapist calls the “W” sit. He’d be having a coronary right now, insisting that I encourage Lily to sit “crisscross-applesauce” to help strengthen her core muscles. Once upon a time, I would’ve engaged in that battle with Lily. She would end up crying, and I would end up a sweaty heap on the floor beside her. She’d still be sitting in her “W” and I’d be seething with frustration. I’m learning to choose my battles very carefully. I’d much rather be sitting next to my girl, going over our cast of characters.

“Who is this, Lily Pad?” I hold up an unfamiliar pink fairy. “Is this Zoe?”

“No, Mama.” Lily giggles. “Zoe orange, not pink!” She snorts, and it sends me into my own fit of giggles. My baby girl is so much like me. Poor thing.

“Is it Rosita?” I tease.

“Mama,” Lily scolds, wagging her finger at me. “That’s Abby Dabby.”

“Of course! How could I miss Abby Cadabby?” I gently articulate
Ca
-dabby, to encourage Lily to copy me.

“Abby Dabby,” she repeats. I smile and let it go. She’s focused on the figurine in her hand and has blissfully tuned me out. When I lean forward to check out who she’s got, I narrowly miss getting pelted with Kermit the Frog. He whistles through the air and hits the far wall with a loud crack.

“
No Kermie,
” Lily bellows; she doesn’t understand that Kermit is a double agent. He doesn’t exist in her vision of what Sesame Street is. He is an interloper on The Street; there will be no rational conversations about how a Muppet can be on two shows.

“Lily.” I speak with the soft but firm voice the behaviorist taught me to use to de-escalate Lily’s tantrums. Her fits were appropriate when she was two, but they’re scary at five. Some of Peter’s and my biggest arguments were over how to handle them. He wanted to draw a line in the sand, show Lily who was boss. I knew that engaging in a power struggle with her would end with no victors, just more wild behavior. You can’t just tell Lily not to do something and expect her to listen. She has to be walked through everything piece by piece. It’s very hard not to throw your hands in the air and scream, “I give up!” So often that’s what it felt like Peter was doing when it came to parenting Lily.

“We don’t throw toys. You can hurt someone that way.” I hold out my hand and meet her frustrated gaze. Her eyes are swimming with unshed tears of betrayal over a misplaced frog.

Fucking Kermit
.

I take Lily’s hand and guide her across the room to where Kermit’s corpse lies facedown on the worn carpet. In Lily’s world, she likes things predictable and safe. It brings her comfort to have a certain amount of monotony to rely on. Anything that deviates from her personal ideology is a threat to her balance; something like a Muppet out of place can send an entire day off its axis.

“Where does Kermit go?” I ask her, hoping that giving her freedom of choice will make her feel empowered over her loss of control.

“In-a twash.” She sniffs. Poor Kermit.

“What if another little boy or girl wants to play with him? They’ll be sad that he got thrown away,” I reason. Lily huffs as she grabs the toy off the floor and stomps over to the bin marked “Misc.”

“You shame, Kermie,” she screeches while casting him to the box of mismatched toys.

No mercy for you, frog. That’ll teach you to ruin my kid’s day
.

“No, play more,” Lily whines.

Getting Lily to clean up the mess is a battle. I have to walk her through—placing my hand over hers, picking up each thing she played with. In moments like these it’s hard not to resent other parents who can simply say, “Go pick up your toys, Johnny,” and be done. I’m exhausted and it’s not even noon.

By the time we get back to the room, Dr. Baker is there. She’s a short woman with a big heart and an even bigger personality. She is the antithesis of every neurologist we’ve ever met. She has a gentle bedside manner and limitless patience when it comes to getting Lily on board and compliant during our visits. She never makes me feel stupid for asking questions, and she takes extra time to make sure that I understand everything well. She is a treasure and I absolutely adore her.

“Hi, Lily.” She greets my daughter with a warm smile and ushers us into Lily’s room. She shakes hands with Peter and me, and then gets straight to the point.

“We aren’t seeing a lot of difference with the pattern or the location of Lily’s seizures on the EEG. The MRI report isn’t ready yet, but preliminary findings are negative for abnormalities.” She sighs heavily. “While I’m happy that there is nothing overtly wrong with Lily’s brain, it doesn’t help us solve the puzzle of why all this is happening. I know how frustrated you must be.”

She has no idea, but I appreciate her acknowledging the effect it has on us as a family, and not just Lily as her patient.

“We will know more in a couple of weeks, when you come back in for the follow-up. For now, I’d like to keep Lily here for another twenty-four hours, so we have a basis of comparison between yesterday’s EEG and today’s.” With that final comment, any hope I had for progress is dashed. She takes a few minutes to play with Lily, making her giggle with delight, and then moves on to her next patient.

Once again we are left with more questions than answers. I’m really starting to doubt that there will ever be answers. Peter packs his things into his overnight bag and kisses Lily on the cheek as he heads out.

“I have to work tomorrow, so I won’t be able to see her until after six,” he reminds me.

“It’s okay. Paige is going to swing by tomorrow, and I’ll call you when they discharge us so you know whether to head here or back to the house.” I’ve got it covered. I always do.

“Bye-bye, Daddy.” Lily smiles and then turns her attention to me. “Mama, snakes,” she says, pointing to the electrodes on her head. When I look up, Peter is gone. That’s how it happened in our marriage: one minute my eyes were on Lily, and the next he was gone.

gotta figure this out

O
ne thing about being the mom of a child with special needs: you get to see the world in a way few others do. I’ve watched other parents take for granted the way their children catch a ball or swing from the jungle gym. I watch their children and see the things that Lily has to go to occupational therapy to learn how to do. Some of those things will never be options for Lily: the jungle gym, a bicycle, even a swing without a harness. Until we can get her regulated, the risk of Lily having a seizure and falling off is too high.

For now we work on things in small steps, fun games with hidden value. Today Lily and I are curled up in her hospital bed, working on motor planning with the iPad.
Fruit Ninja
is my weapon of choice. In clinical terms, we’re working on bilateral and eye-hand coordination. In layman’s terms, she’s learning to hold the iPad with one hand while she slaughters fruit using the pointed index finger of the other. I’ve learned to appreciate the little things. Most people would see a kid playing a video game; I see the triumph of Lily enjoying a game that other kids her age also like. We’re just conquering a frenzy level when there is a knock on the door.

“Ms. Hunter? Lily?” A wisp of a woman enters, pushing reading glasses up the bridge of her nose as she reads Lily’s chart. I’ve never seen
her before; it sets my nerves on edge that a stranger is scouring through the doctor’s notes.

“Hello,” I reply warily. “Can I ask why you have my daughter’s chart?”

“I’m Patricia Nix.” She grins, unaffected. “I’m a social worker here at University Hospital.” She reaches out to shake my hand. “I’m here to make sure that your family is connected with all available resources in our area. I’m just checking to see if anything has changed since Lily was admitted.”

“You could’ve asked me if something has changed. It’s a little unsettling to have a complete stranger poring over Lily’s chart notes.” I attempt to sound reasonable, but I know I’m failing miserably. I sound defensive and, frankly, rude. I just don’t want some social worker coming in here, trying to label Lily when we don’t really know what’s going on.

“Actually, what I’d like to do is get you in contact with someone from Exceptional Education for Exceptional Children; they are a parent-advocacy group that can help you find the best placement for kindergarten this fall.” She pauses to pull a business card from her purse. “This is Cameron James’s number. He’s a really wonderful parent advocate, full of lots of great information about the Gaston County School District.”

“Thanks, Ms. Nix, but isn’t this is all a little premature until we can figure out what’s wrong?” My voice shakes, betraying my fear. I thought Lily would’ve developed more before she started school. Our goal was to have her ready by kindergarten, but Lily barely knows her colors, the alphabet, how to count to ten. She’s nowhere near ready.

“Of course,” she concedes. “The last thing we want is to jump the gun, but Lily will need to start school in the fall, regardless of whether she has a diagnosis. The school district will do some assessments to see what class will best suit her.”

I stare at her blankly. I have successfully avoided kindergarten registration. I can’t fathom what next week will look like, let alone the
coming school year. I can’t register Lily, because I can’t let go of the dream I have of her attending our neighborhood school. The best one in the district, the one we chose when we were buying our home. PTA bake sales and book fairs; I was going to be the soccer mom cliché. In light of everything else going on, it seems silly to be holding out for that. Still, something about letting it go feels like a finality that I’m not ready for yet, and I will be damned if this pint-sized pixie forces me into it.

“I understand what you’re going through,” she says.

I feel my body flinch, like the words have physically struck my face.
Like hell you do! You don’t know an effing thing about it.