by Maggi Myers
“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
One 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.
“Right.” I watch her face fall as the sarcastic bite of my word penetrates.
She shakes her head and sighs heavily. I almost feel bad. Almost. She ignores my attitude and continues explaining. “My daughter, Jenny, is nine years old and has Rett syndrome. I do understand and I have been where you are.”
Okay. Now I feel bad. “I’m sorry,” I mutter, ashamed.
Why can’t she just be a bitch? Being angry is so much easier than being hurt. It makes me feel like a warrior, and I thought that’s what I needed to be. I only ended up fighting the truth and the people who could’ve helped me accept it.
“Don’t be,” she says. “I just want you to understand that I am not your enemy. I’m here to help.”
I think back to what Max said about letting people in and allowing them to help shoulder the burden. Pushing everyone away can’t change Lily’s prognosis, and yet that’s what I’ve been hoping for. I doubt I would’ve pushed away anyone willing to tell me that all the doctors were wrong, that Lily would be fine.
“Will you leave me your card, too?” I want to ask a million questions, but not in front of Lily. I want to know how this woman can mention her daughter’s disability and not burst into tears or throw something across the room. I want to know how to stop hating other people for their perfect children. I want to know how to move on. I want to know how to live, when the life I was supposed to have was ripped away from me.
“Of course,” she chirps, clearly happy at my change of heart. “We can set up a time to talk in the next few weeks, if you’d like.”
“I would.” I take the card from her and pretend to study it. Not looking at her is keeping me from crying. “It would be great to have some guidance on all of this.” Maybe she can teach me, like a wise shaman, to find my inner Zen mama. To tackle the anxiety of the unknown and weave flawlessly through the maze of social services for Lily.
“Anytime, Caroline.” She smiles. “I mean that. You can call me anytime.”
I nod. If I say anything, I won’t be able to stop the tears stinging the back of my eyes. She gives a small wave to Lily, who is oblivious and focused on the iPad. Once Ms. Nix is gone, I let the tears fall. Careful not to let Lily see me, I hide in the bathroom and weep. No matter how hard I try to deny the limits of Lily’s capabilities, the vast reality of her condition is barreling toward me like a speeding train. One that’s going to come off the rails the second it hits the station, wiping out everything in its path.
“Caroline?” My head snaps up at the sound of Audrey’s voice. The tissue in my hand is long past its usefulness, so I wipe my face on my sleeve.
Great. Just effing great.
“Come on, now,” Audrey clucks at me like a mother hen, gently gripping my upper arm and tugging me to my feet. “I gotcha.” I watch silently as she takes a washcloth from the shelf and wets it in the sink. With gentle hands, she wipes my face; it’s been a long time since anyone has taken care of me like this, and her tenderness only makes me cry harder.
“Sweetheart,” Audrey coos, “why don’t you take a break and let me play with Lily?”
“Thanks, Audrey.” I sniffle. “But I’m all right.” I lie, because I’m ashamed. I should be able to handle myself without falling apart. Audrey puts the washcloth down and takes my face in her hands, forcing my chin up and my eyes level with hers.
“I insist,” she says firmly. “Besides, Lily needs to catch me up on this iPad thing.”
This isn’t a battle I’m going to win, so I let Audrey straighten me up, hand me my purse, and point
me toward the elevators. While I’m waiting, I can’t help but think about what’s happening on the seventh floor. Still, scary-splotchy Caroline isn’t the friendly face I want to present the next time I see my stranger. I want to be someone he can talk to, not someone he wants to run from. Until I can figure myself out, I’m not much use to anyone else. Whether I want to be or not.
talk
The hum of lunchtime activity in the cafeteria keeps my feet moving away from the noise and toward the doors to the patio. Sunlight shines between the towers of the hospital, casting a single pocket of warmth on a lone picnic table. A beacon for my refuge. I take a seat and pull Cameron James’s business card from my purse.
Cameron James
Parent Advocate / District Liaison
Exceptional Education for Exceptional Children
The thought of finding placement for Lily without assistance is far more frightening than calling this person—and yet, I find myself terrified.
Why? What are you afraid of?
I flick the card against my fingertips while I go through a mental rundown. I knew the day would come when Lily would have to start school and we would have to make a decision. I just never thought we’d have so little choice. The reality is, Lily isn’t suited for a general-education setting. I know this, and yet I have avoided discussing it at all costs. In fact, it’s not something I have ever talked about with anyone.
Not Peter.
Not Paige.
No one.
Talking about it makes it real.
Therein lies the problem: I’ve separated my head from my heart, to rationalize what I’ve done. In my head, pretending nothing is happening is just stupid. It’s not like I’m keeping some big secret; everyone who knows us knows that Lily has special needs. But in my heart, formulating the words and expressing my fears makes everything all too real. Instead of addressing the conflict, I just keep hiding from it.
Who do you think you’re kidding?
No one.
I dial the number at the bottom of the card and wait anxiously while it rings. I run through a hundred different things I could say and am about to hang up when someone picks up.
“James,” says the voice on the other end.
“Uh… um…”
“Hello?” he says.
“Sorry, wrong number,” I mumble, and hang up.
Idiot.
I throw my phone back in my purse and tap my forehead against the cool metal of the tabletop. Next time I should practice what I’m going to say. At least I didn’t give my name.
“That bad, huh?”
I yelp, startled by the voice. I snap my head up and find my stranger standing on the other side of the table. I pray for the floor to open up and swallow me whole.
Oh, God. This isn’t happening.
“Hey, there, stranger.” I want to crawl under the table and hide. My knack for the ridiculous is a curse. If something’s embarrassing or laughable, more than likely I’ll be front and center.
He tilts his head and eyes me carefully. It makes me laugh nervously.
“Hi, Caroline. You all right?” He furrows his brow in confusion. It’s so adorable and I am so flustered, I can’t stop the maniacal giggle-snort from escaping.
Oh, for the love of Pete. Just kill me now.
“Peachy,” I mumble, burying my head in my hands. There are no limits to my ability to mortify myself. Here I was thinking I’d take some time to collect myself before offering him a friendly ear, and in he walks, into the middle of another meltdown.
“Did you just snort?” he asks, incredulous. Smart-ass.
“Don’t mock me.” I bury my face in my hands again. “I’m dying over here.” I lift my face and circle it with my index finger. “See the tomato face? Proof of my discomfiture.” There’s no point in pretending I’m demure or sophisticated. I can only hope that he’s not repulsed by my lack of refinement. His warm eyes twinkle when he smiles, flashing me a set of heart-stopping dimples.
Oh, my swoony stranger. I am an utter and hopeless mess. Please take pity on me.
“No mockery here,” he promises. “Wait… have we actually met?” His smile is sweet and distracting.
“Actually, no.” I crinkle my nose. “I don’t even know your name.”
He sits down across from me and holds his hand out. “Hi, I’m Tate Michaels.”
I place my hand in his and our eyes lock. “I’m Caroline Hunter,” I say with as much confidence as I can muster. “Nice to meet you, Tate.”
“Likewise, Caroline.” His hand is warm and strong where it grips mine. It feels nice, and I wonder if that’s because of Tate or because I’m that starved for human contact.
“Sorry about that; you caught me in a moment.” I clear my throat and look away.
“I came out here to just breathe for a minute.” He sighs and lets go of my hand. “I stepped outside and there you were, banging your head on the table.” His smile returns and I feel my cheeks warm.
“You got me.” I shrug. “Head banging is the shtick I employ to charm unassuming strangers.”
His laughter reverberates throughout the concrete confines, giving me a keen sense of accomplishment. It’s nice to know that I made him smile, after seeing him so pained earlier.
“You’ve got an interesting way of saying things.” He studies my face like he’s trying to read my thoughts. It makes me squirm. “You must be a writer or something.”
I can feel my eyebrows jump to meet my hairline. It’s been a long time since I’ve been anything other than Lily’s mom.
“Or something,” I say. “I’m a dabbler.”
“A what?” He cocks an eyebrow at me.
“A dabbler. I dabble.” I try to explain. “I dabble with writing and with music. I’m proficient in both, but not gifted enough to make anything of it.” I feel silly as soon as the words come out of my mouth.
Why are you telling him this?
It took a long time for me to accept that I was never going to find that something I’m really good at. I spent a lot of time wandering in college for that reason. When I finally did find my passion, it was for other people’s writing, not my own.
During my senior year, the editor of the literary magazine recommended me for an internship with a small publisher. I spent the summer reading thousands of query letters from aspiring writers. If they pitched something that sounded interesting, I passed it up the chain, where it would be graded again before even making it to an editor’s desk. It fascinated me how one person’s opinion could make or break someone else’s life’s work.
Lo and behold, I was finally good at something: I had a knack for weeding out the potential from the crap, and in the fall I was hired as an assistant to the acquisitions editor. When the company expanded a few years later, I was promoted to acquisitions editor myself. Not bad for a girl who had so much trouble making up her mind.
I had a husband I adored and a career that I loved. My job was my solace when Peter and I started to have trouble conceiving. It was a place where I could get lost in someone else’s story and not be sad while I was there. That’s what I missed the most about it, when I had to quit to focus full-time on Lily’s needs. There were no more stories to hide in when I could’ve used them the most.
“I can’t imagine you’re not gifted.” He penetrates me with those warm eyes. “With that sharp wit of yours, I’m sure anything you write is brilliant.”
“Wow.” It’s all I can come up with. He takes my monosyllabic response in stride and gives me that dimpled smile. I haven’t thought about writing in years, and I’m surprised to find that his compliment strikes such a chord within. Just the thought of putting pen to paper again awakens an old yearning I’d given up on long ago.
“Are you hungry?” he asks, unfazed by my slack-jawed expression. He pats his stomach and says, “I’m starved.”
“Sorry?” I urge my brain to catch up, but it’s still stuck back there at “I’m sure anything you write is brilliant.”
/>
“Food.” He pantomimes spooning food to his mouth. “Eat. Tate hungry.”
No mockery, my ass.
“Are you trying to tell me that you’re a Neanderthal after all?” I smirk. “Because I’m pretty sure they were pre-utensils.” I copy his gesture of spooning food.
He beams at me. “I like you, Caroline. You’ve accomplished an impossible feat by making me laugh on a perfectly crappy day.” And just like that, the playful banter ceases. He tries to keep smiling, but the warmth fades from his eyes as he wavers.
Helplessly, I watch as his face falls and he reaches to pinch the bridge of his nose the same way he did earlier, and it breaks my heart. I grasp his hand before it makes contact with his worry spot. His sad eyes search mine in confusion.
“Do you want to talk about it?” I ask, as evenly and matter-of-factly as I can. I want to be careful to keep my personal feelings in check. If he wants to share, I want him to feel comfortable. Nothing was worse for me than having to deal with someone else’s emotions when I could hardly deal with my own. When I told my mom that Lily had been diagnosed with a developmental disability, she was devastated. She didn’t go to my father, my sister, or even my brother to be consoled; she brought all of her emotions to me. I could’ve used my mother’s support; I desperately wanted someone to listen. Instead, I ended up comforting her.
He’s hesitating, and I don’t blame him. He may like me, but he hardly knows me. Then again, maybe that makes it easier. Who knows.
“Listen,” I suggest. “You said you were hungry, so I’m going to go grab us a couple of sandwiches from inside. You sit here and think about it. When I get back, I’m not going to say anything. You decide what we talk about. No harm, no foul.” He nods slowly, still contemplating. I give his hand a good squeeze before I let go. “I’ll be right back.”
From the line inside, I can see Tate’s back through the window. He’s slumped forward, elbows to table and hands in his hair. I think about all the times I’ve been exactly where he is, digesting whatever crap news the doctors have doled out that day. How nice it would’ve been to have had someone to talk to after that first appointment, before I made a habit of keeping it all to myself.
