Lily Love (4 page)

“I love you, Lily Pad,” I murmur as I run my hand down the back of her head.

“Bye, Mama, Mama, Mama,” Lily answers.

Before I can change my mind, before the voice in my head tells me that I’m a rotten mother for going, I leave.

When I reach the safety of my car, I lean against the steering wheel and try to process the day. Lily’s tests, Max, the stranger, and Peter all swirl around my brain in a toxic brew.

Mick Jagger wails from my phone, “Dance little sister, dance,” saving me from further self-deprecation. I can always count on my sister to make me laugh. She has a propensity for changing my ringtones. Last week she programmed my phone to play a dirty little ditty when she called. I’m positive she waited until I was in a public place to light up my phone with “I’m your pole and all you’re wearing is your shoes.” That’s my Paige, ever the comedienne.

“Hi, Paigey.” I force a chipper tone and try to hide my mood.

“Sweet Caroline . . . ba ba ba . . . ,” she sings off-key. My sister is crazy and I love her for it, but I’m just not in the mood right now.

“What’s up, sis?” I cut into her song.

“I’m checking on my little sister and my beautiful niece,” she answers. “How are you, honey?”

I’m so grateful for my sister. She’s five years older than I am, but at least ten years younger in spirit. She’s wild and carefree in a way that I admire but could never be myself. Even if my personality were similar to my bohemian sister’s, my responsibilities could never allow for that kind of life.

“Lily is with Peter,” I begin. “I’m headed home.” I hold my breath, trying not to cry. I don’t want Paige to worry.

“What do you mean, you’re headed home?” Her tone is laced with suspicion.

“I’m headed home, Paige,” I repeat. “I just need a break; I’ve been at the hospital since seven a.m.” My voice cracks, and fresh tears pool in my eyes. Paige’s silence on the other end makes me nervous.

“I’m coming over,” she says.

“What?” I sniffle.

“I said, ‘I’m coming over,’ ” she repeats with irritation. “I’m not going to let you wallow in misery the first night you leave Lily and Peter in the EMU without you.”

“I’ll be fine, Paige,” I promise. “I just want to be alone.” The last thing I want is for Paige to be wasting her time on my train wreck of a life.

“Right,” she smarts back. “That’s exactly why I’m coming over. You don’t need to be alone, Caroline. I’m your big sister, and I love you. Let me be there for you.”

“What if I can’t do it, Paigey?” I cry. “What if I can’t handle being away from her?”

“You can handle it, Caroline. You’re the strongest person I know. First thing you need is to get the hell out of that house for a while. Go get your ass in the shower, and I’ll pick you up in an hour,” Paige demands.

“Paige, I’m tired.” I’m mentally exhausted; I don’t want to go out.

“You need to eat, Caro,” she scolds. “I know you, and I know you don’t have shit to eat at home. Let me take you to dinner and then we’ll hole up and watch
Mallrats
.”

She knows how to play dirty.
Mallrats
is my favorite movie.

“Can’t we order in?” I beg.

“Caro, it will do you good to see something other than the inside of that house and the hospital,” she says softly. “You’ve got to get out, babe.”

I know she’s right, but the thought gets caught in my throat. I can’t breathe.

“Are you still there?” she asks.

“Yep. Here,” I sputter.

“See you in an hour, okay?”

“Okay.” I force myself to answer. It’s a small step, but something’s got to change.

when a heart breaks

I
t’ll do you good to see something besides the inside of that house.

Paige’s words cling like static as I step into the foyer.

I toss my keys into the bowl on the hall table, avoiding the framed picture of my wedding day, and head straight for my bedroom.

Paige is right: I need to get out of this house. In the stillness there is a quiet melancholy that hangs in the air, and I can’t remember the last time I was happy here.

Along the hallway wall there are photographs of Peter and me over the years, and of course Lily. Peter and me at our graduation. The trip we took to Asheville where he proposed. Peter in hospital scrubs, holding Lily the day she was born. The three of us covered in cake from Lily’s first birthday. Each moment preserved in its frame from the wear of time. I can’t bear to look long enough to put them away.

We were so happy.

My eyes fix on the photo of Peter, Lily, and me from her first birthday. My head is thrown back in laughter at Lily’s cake-covered hands holding Peter’s face. We were blissfully ignorant.

There isn’t a day that goes by that I don’t wish to go back to that place of ignorance: the morning before Lily’s evaluation at the Early
Intervention Clinic. She was just eighteen months old at the time and it’s the last time I remember really being happy.

It hits me like the shockwave from a bomb, sending me stumbling into my bedroom. Collapsing on my bed, I let grief filter through the memory of that day.

I start singing her favorite lullaby for the third time as I pull Lily from her car seat. It’s the only thing that has kept her happy since we left the house. She sucks furiously at her pacifier and crinkles her eyebrows at me. I laugh at the seriousness of her gaze. Her hazel eyes are focused on me, but they don’t see me. I can’t put my finger on it. I don’t know what it is; I just feel a disconnect. I have high hopes that the team of doctors and therapists will be able to help. Maybe some speech or occupational therapy. Peter and I convince ourselves it’s nothing major. In our naive confidence, we decide it’s not worth Peter taking time off for the appointment.

Our visit is set up in two parts: a team of early-childhood specialists observing Lily playing, while a developmental pediatrician asks me hundreds upon hundreds of questions.

“Mrs. Williams, I’m Dr. Miles.” The gentle voice of the doctor sends fear skittering across my spine. I hold my hand out for him to shake and allow him to escort me from the room to an adjoining conference room.

“I need to ask you a few more questions about Lily’s behavior.” His sympathetic eyes meet mine and my heart sinks.

“What do you mean?” I ask.

“Does she make eye contact with you?” His gaze is serious, and I fear what my answer will mean. I want to say that she looks me in the eye and smiles, like I want her to, but I can’t. I can’t lie, either, so I give the most ambiguous answer I can get away with.

“Sometimes.”

“Does she smile at you?”

Shit.

“Not really.”

“Does she have any rituals? Does she tantrum if you deviate from her routine?” He continues without hesitation, taking copious notes in the margins of Lily’s paperwork.

“I thought I was supposed to keep her on a steady routine. Has that changed? Is that bad?” I panic.

“No, of course not. It’s just that some children react more strongly than others. Some children will head-bang or rock rhythmically, detaching emotionally or overreacting emotionally. I just want to understand Lily better,” he reassures me.

I want to cry. I want to scream. I want to grab Lily and run. All of a sudden I don’t want to know. I just want a few more moments of blind ignorance. I’m not ready for the look that is crossing Dr. Miles’s face.

“There are no wrong answers, Mrs. Williams,” he says. “The more we know, the more targeted we can be with helping Lily. That’s all any of us wants, right?”

I want Lily to get better. She needs to get the right help so she can grow up and out of this hiccup in her development. Putting on my bravest face, I start from the moment I first noticed something was “different.”

“Not long after she started walking, she started to pace the length of the fence at the playground, staring through the chain links,” I whisper. “She wouldn’t play on the equipment or with the other toddlers. Trying to leave the playground caused really awful temper tantrums, so we stopped going.”

“How old was she when she started to walk?” His question takes me off guard.

“Oh . . . um . . .” I stammer, reaching into my internal Rolodex of Lily milestones. “Ten months. She got up and started running to keep herself from falling forward. She just kind of took off.” I smile at the memory of her little legs working frantically against face-planting in the living room.

“Did she crawl first?”

“No.” My heart races when he takes several minutes to scribble more notes.

“Did she ever willingly bear weight on her hands and knees?” He won’t look me in the eye. It terrifies me.

“No, she didn’t.” I swallow the fear clawing up my throat. “What does that mean?”

“It means she’s tactile defensive; she’s hypersensitive to sensory input,” he starts. “Lily definitely suffers from Sensory Processing Disorder. She is sensory-seeking in some areas and tactile-defensive in others.”

I try to process what he’s saying, but my own senses start to waver. Block out. Shut down. “I don’t understand.” My voice is thick with fear.

“We see Sensory Processing Disorder in many children with disabilities.”

I can’t breathe. This is not happening. This can’t be happening. I can’t speak, so Dr. Miles continues.

“Children with SPD live under constant stress, because their brains interpret even the most harmless touch as threatening. They can also be under-responsive to pain, heat, and cold. All of these factors make their environment a war zone.”

He keeps talking, but I quit hearing him. I’m still hung up on “We see this a lot in children with disabilities.”

Disabilities. Everything I thought I knew has suddenly become a mocking nightmare. Dr. Miles stops talking and looks at me quizzically.

“Do you understand what I’m saying, Mrs. Williams?”

“No,” I snap. “No, I don’t understand at all. I brought my daughter in to be evaluated for speech therapy, possibly occupational therapy, and now you’re telling me she has some sensory thing that ‘many children with disabilities have’ and I’m just supposed to ‘understand’? What are you trying to tell me? Please just quit walking on eggshells and tell me what’s wrong with Lily.”

“Mrs. Williams,” Dr. Miles begins, with a nervous shift in his seat. “Lily doesn’t fall into a singular category. She has global developmental delays, which means she is profoundly behind in every area of development. This doesn’t always come with a clear diagnosis; the best I can say for Lily right now is that we need to watch her development for the next year or so. In the meantime, we want her in therapies to get her caught up and see how it goes from there.”

“So with therapy, she will outgrow this. She’ll be fine, right?”

“Mrs. Williams.” The doctor reaches across the table and places his hand over mine. I squeeze my eyes shut, trying desperately to block out Dr. Miles’s next words.

“There are five areas that we look at: language, social-emotional, gross and fine motor, physical, and cognitive. While Lily’s development has been slow, she has progressed. Her cognition is lagging further behind the other areas.”

I yank my hand away. “She’s eighteen months old!” I cry out in shock. I don’t know what else to say or how to fight, to argue.

“Lily is still struggling with concepts like object permanence and recognition, among other things. Her deficit places her at a developmental age of around nine months old.”

I remember that I stared at Dr. Miles for a long time, unsure of proper protocol. I vaguely remember thinking that it would be rude to curl up in a ball on the floor and weep. Instead I signed more paperwork and nodded my head when Dr. Miles told me he would call to make an appointment to go over the official findings.

I don’t remember many other details about that day. I don’t remember pulling into our driveway, taking Lily out of her car seat, or walking into the house. I hardly recall our neighbor, Mrs. Brown, coming to the door to tell me that my car was still running. I remember only the way it felt as the kickback from Dr. Miles’s words struck me. They say when a bomb strikes the earth, your senses shut down.

No sound.

No sight.

The only thing you feel is the force of the blast rattling your body. All that is left is a crater where something stood before and a shockwave that flattens the surrounding area for miles. Every dream I had for my daughter, every plan, every single thing was flattened to the ground, and at the center was the crater where I had been.

comes and goes in waves

P
aige: Up off your ass. 10 min out.

Great.

I grab the first clean shirt I can find and throw on a pair of jeans. Honestly, as long as my clothes are clean, I’ll consider it a win. It would be nice to appear to have it together when she arrives, though, even if it’s just an act. For good measure, I put on some mascara, blush, lip gloss and call it good.

You’re not a hot mess. You are fine.

After a minute of self-talk, I hear Paige knock. When I open the door she takes me in with a genuine smile and an approving nod.

“Not bad, Caro. I’m glad to see your sense of humor is still intact.” She chuckles as she points to my shirt. “ ‘My Patronus is a Bookworm.’ Nice.”

I roll my eyes. It figures I would grab my Harry Potter T-shirt. I haven’t worn this in years. I haven’t read a book for enjoyment for longer than that.

“It was the first clean shirt I could find.” I shrug. “Go figure.”

“I like it. I miss snarky Caroline.” She wraps an arm around me and squeezes me against her. “She was a lot of fun.”

“Yeah, I miss her, too.” I sigh.

I really do miss her, and I will never be that person again.
Harry Potter
and
The Little Prince
have been replaced on the nightstand by
Breakthrough Parenting for Children with Special Needs
and
Reconstructing Motherhood and Disability
. The piano is an expensive surface for picture frames and knickknacks. These things that nourished my soul are just fossilized trinkets sitting on a shelf collecting dust, waiting for me to pick one up and say, “Remember when . . .”