by Maggi Myers
“Another song?” I ask.
“Beth Orton, from the album Comfort of Strangers,” he replies. I shake my head at his inner catalog of music knowledge.
“Learn something new every day,” I shoot back with sarcasm. Max gives me an inquisitive look.
“Back at you,” he chuckles. “I never knew you were such a smart-ass.”
“Yeah, well, a girl’s got to have some secrets.”
Max orders his coffee and we grab a table by the window. My mind drifts back to my stranger and how I wish I knew his name—something.
“Thinking about Lily?” Max’s voice brings me back to the present.
No.
“Just wondering how she and Peter did last night,” I lie.
“I’m sure they were fine,” Max reassures me. “You can’t be there all the time.”
“I’m learning that.” I sigh.
“Good.” He sounds surprised. “You’re the most dedicated mother I’ve seen, Carolina, but you’re also the loneliest.” Of all the things that Max could’ve chosen to call me, that shocks me.
“Lonely?”
“You don’t let anyone in,” he says. “Strength is something you’ve got in spades, but you’ve got to let others be strong for you, too.” He regards his coffee for a moment and then lifts his piercing eyes to mine. “I’m worried about you.”
My response lodges in my throat and tears fill my eyes.
“Jesus, Max.” I sigh. “All I do around you lately is cry.” I laugh and try to make light of my waterworks, but Max is not amused.
“Did you know that in all the years I’ve known you, yesterday was the first time I’ve seen you cry since we met?” he asks. I shake my head and wait for him to continue. “I’ve watched you shoulder Lily’s care without so much as a heavy sigh. That doesn’t tell me that you have superhuman strength; it tells me that you are tuned out. That’s not living.”
“Max,” I whisper, as the tears streak down my face. He ignores me and continues talking.
“And I know that I’m supposed to be impartial with the patient’s family, but I’m so mad at Peter.” He shoots me a warning look when I try to interject. “Don’t. I get that you aren’t pissed, but I am. I’ve watched as you’ve given up everything for Lily, never taking anything for yourself. It’s not right.”
“Max, sometimes it isn’t anyone’s fault,” I plead. “Sometimes things just end. You just told me that I need to let others be there for me. Don’t you think Peter felt that way, too? I stopped seeing him; I was only focused on Lily. It’s not fair to just blame him.”
“You’re my friend, Carolina,” he says. “My loyalty belongs to you. Don’t expect me to sympathize with him. I can’t do it.”
I let his words take root in my heart. As misguided as his anger may be, it feels good to have someone on my side.
“I’m sorry about the scene in the hallway,” he goes on. “Peter didn’t seem too happy to see me there, and the last thing I wanted was to make things harder.” He shakes his head. “I just don’t understand how he could walk out on you and Lily.”
“You’re a good friend, Max.” I sniffle as I wipe my eyes. “I appreciate your standing by me, but blaming Peter isn’t the answer. It’s a hard enough adjustment for Lily without people mapping battle strategies.” I look down for a minute and consider carefully what I’m about to say. “I don’t know how to do this,” I whisper.
“Do what?” His concern is clear.
“Be a friend,” I start. “I mean a real friend, or a … Never mind, I don’t know what I’m saying.” I slink down in my seat as Max starts to chuckle.
“Caroline, you are a real friend, always have been.” He smiles and reaches across the table for my hand. “You were there for me when Nina left, bringing me casseroles to make sure I ate. Now it’s my turn.”
“You’re going to bring me casseroles?” I snort.
“Smart-ass,” he mutters, and shakes his head. “Let me be there for you. You need a sitter to go out with Paige? I’ll hang with Lily Love. You need to talk? I’m here for you. Okay?” He squeezes my hand and then leans back in his seat.
“Thanks, Max.” I smile and sip my coffee, unsure of what to say.
As if he can sense my thoughts, Max leans his arms on the table. “Look at me,” he urges, so I lift my eyes to his. “You’ve been in that bubble too long. This isn’t weird; it’s what friends do. So quit squirming.”
I stare in shock for a minute before I regain my composure. I haven’t had friends in so long it feels foreign to me. The friends I had before Lily fell into two categories: those who didn’t have children and couldn’t relate to what I was going through, and those who did and still couldn’t relate. I tried to make those friendships work, but it hurt to watch other parents and see their children breezing through the developmental milestones that Lily couldn’t quite reach.
I even joined a support group for moms of children with special needs, thinking that would be a better fit. It only made me more insecure about not having all the answers where Lily was concerned. They spent the bulk of our meetings talking about the newest therapies, diets, research studies—you name it. All I wanted to do was commiserate about how hard it was to still be changing diapers at Lily’s age, or how frustrating it was just to go to the grocery store with her. God forbid you disagreed with one of their methodologies. One mother had the audacity to chastise me for my choice in behavioral therapy for Lily, just because it wasn’t her choice.
“Applied Behavioral Analysis? Isn’t that monkey training?” she sneered. I was so shocked by her gall I was surprised I had the ability to answer her.
“Actually, ABA is the only behavioral therapy that’s based in actual science. It’s driven by individualized data, which is proven to be the most effective way of predicting and correcting behavior.” Monkey training. What a bitch.
After that meeting, I determined that I didn’t need support like that. It left me with the feeling that I was being judged as a parent, and that’s hard to shake when you feel like everyone’s eyes are on you and your child who’s different from everyone else. It became easier and easier to just shut everyone out.
“Jeez, you’ve got me all figured out, huh?” I laugh nervously. It’s uncanny how well Max knows me. He’s absolutely right, I’ve been in a bubble for far too long.
“Caroline I See You.” He smiles.
“James Taylor, from the album October Road.” I smirk when his eyes go wide.
“Well how ’bout that.” He beams. “There’s something else underneath the facade after all.”
“Ha, ha.” I roll my eyes and try to ignore the knot forming in my stomach.
The last person I felt really knew me decided not to stay. It’s equal parts scary and sad: Scary that letting someone know you means letting them near enough to hurt you. Sad that Peter was the last person I let get close at all.
fall apart today
The elevator in the Neurology wing feels like a tin of sardines and smells slightly worse. I’m sandwiched between a very tired-looking nurse and a man with a big bouquet of flowers. On each floor I step out and let a few more people off before stepping back inside. The Epilepsy Monitoring Unit is on the top floor, of course.
By the seventh floor the car has emptied enough that I don’t have to jump off and on. When the doors open, I don’t know what makes me look up, but I do. Standing in the hallway is my stranger and what appears to be a doctor. My stranger is facing me, but his eyes are shut tight, his fingers furiously working the bridge of his nose. My heart stops, the doors close, and I am whisked to the next floor—Pediatric Neurology: Epilepsy Monitoring Unit.
My stranger.
I see myself in him and his pain feels like my own. Kindred spirits moving on a parallel through the same myriad of emotions. It’s totally presumptuous. Ridiculous. Still, it feels like my heart senses his hurt, and all I want to do is hold his hand.
I wander down the hallway, replaying the scene in my head. The pain was etch
ed on his face. Even though I only saw it for a few seconds, the look is seared into my memory. Probably because it’s familiar. I can’t remember which department is on the seventh floor, but someone my stranger belongs to is there.
“Hi, Mrs. Williams,” the charge nurse calls as I approach the nurses’ station.
“Hunter, Audrey. My last name is Hunter now.” I smile sympathetically when she blanches.
“I’m so sorry,” she stammers. “I didn’t know.”
“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 Cadabby, 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.<
br />
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.
