Lily Love (12 page)

“It’s urine from a rare white shark species that can only be found off the Great Barrier Reef. Don’t belittle this man’s journey. He gave up everything for his son.”

“He gave up gainful employment, and thus the health insurance his child was covered by. Do you know what happens when you have a chronic illness and have a lapse in health coverage?” I don’t wait for her to answer. “You become uninsurable. How’s he going to pay for his kid’s insulin with no job and no health insurance? The guy is an idiot, not a hero!”

“He gave it all up to do what he thought was best for his son. I think that’s heroic. I thought you’d be inspired by his story.” She sighs.

“Inspired to do what? Go trek through the Amazon for the rare insect excrement that will cure Lily of a condition they can’t even diagnose?” Peter shoots me a dirty look across the top of the headlines. Nice—he’ll get upset over his mother’s honor but not mine. She started this ridiculous exchange when she e-mailed me the article’s link.

“Oh, for the love of Pete, Caroline, quit being so dramatic,” she snaps. I want to scream, but that would interrupt me as I bite through my tongue. “I thought this father was a good example to aspire to, that’s all.”

My lungs contract painfully, leaving me breathless. Silence crackles across the phone line as I absorb Geri’s barbed words.

“What are you saying, Geri?” I ask. I look over to Peter for a sign of support. He’s back to hiding behind the sports page. “You don’t think we’re doing enough for Lily?” The paper doesn’t move. I know he can hear my end of the conversation and still, he acknowledges nothing.

“I think there is never enough you can do for your children,” she says. “As parents, we have to be willing to make sacrifices in the best interest of our children.”

“What is that supposed to mean?” I throw my free hand into the air.

“Nothing, just that there’s always something more we can do as parents. If you’re doing everything you can, don’t you think Lily would’ve shown more progress by now?” She can’t possibly expect me to answer her. I’ve given up every single aspect of my life to care for my daughter: my job, my friends, my family, my sanity. All of it.

I can’t listen to another word. I place the phone on the table next to Peter, with Geri still chattering away on the other line. Her sour words pitch violently in my stomach. I barely make it to the bathroom in time before nausea overtakes me. On a mighty heave, the contents of my belly empty into the porcelain bowl.

I wish I could purge the conversation as easily, but all I can hear are my mother-in-law’s thoughtless words. From her perch in Sarasota, she castigated me with no consideration of the damage she’d inflict. She barely sees Lily twice a year on holidays, but apparently that’s enough to know that I’m not sacrificing enough for my child. Giving up my career and dedicating every waking moment to therapies and doctors isn’t sacrifice enough? It feels like I’ve given up everything in Lily’s best interest. Maybe I’m kidding myself, and there’s more that I could be doing. If Geri is right, then trying to accept Lily’s prognosis is as good as giving up on her.

My body hurts from the violence of my retching. Even after I’m empty, I dry heave until I can no longer hold myself up. I press my face against the cool tiles of the bathroom floor and cry.

There will never be enough I can do, and it will always be my fault.

After Alex Drake leaves, I tell Max the story of my mother-in-law and the shark piss. He laughs through some of it, and groans through most of it.

“Only you could make that story seem remotely funny.” Max chuckles.

“It’s a gift.” I wink. “What can you do if you can’t laugh?”

“Seriously, I want to know where that woman hides her horns and her tail.” He shakes his head. “Damn! That was just evil.”

“She just wants there to be an answer,” I defend. Why? I have no idea.

Max moves from his chair to squat in front of the exam table. “It’s not your fault there’s no answer.” His eyes plead with mine for acceptance of his words. I can’t.

“She just wants what’s best for Lily.” I drop my gaze to the speckled floor tiles.

“So do you,” Max returns. I know what he’s waiting for me to say, so he can vehemently disagree. He wants to set me straight, free me from the confines of my guilt. After listening to Alex talk about his son, I want to be. Free.

“She needs someone to blame,” I whisper. There it is. She needs someone to blame, and no one has stopped her from aiming at me. When I came out of the bathroom that day, Peter was outside with Lily. He never acknowledged the pain his mother caused me. Geri never mentioned our conversation again. She didn’t have to; I knew how she felt. How they both did.

Max’s hands lift my face, bringing us eye to eye. “It’s not your fault.” His gaze ensnares me with its stormy, sea-glass insistence. In the depths of my soul, I know that Lily’s disability is not my fault. It wasn’t the stroke, but part of me will always be angry that my body betrayed me. As a woman, I’m built to grow life in my womb. When I was finally able to conceive without miscarrying, I almost died in childbirth. For the longest time I felt no greater failure than that of my pregnancy. I didn’t know if I’d ever get over it; I’m still learning.

That self-loathing used to make sense to me, but now I think it just makes me sound like a delusional moron. Clinging to this false sense of censure didn’t make it any clearer. It only made me a martyr.

A martyr complex? Jesus, Caroline, you’re so much smarter than this. Get over yourself.

Then who am I, if I’m not a scapegoat? I have no idea, and I will never know if I don’t let myself move on. I’ve cleaved to my pain for too long, insisting it was a buoy keeping me afloat. Really, I’ve been drowning the whole time. Swimming with the fishes. Me, Jimmy Hoffa, and every other poor soul anchored to the sea floor by their concrete shoes. The only difference is, nobody’s going to come looking for a person who’s spent the last five years shutting everyone out. It’s up to me to save myself. To do that, I have to be willing to let go.

It’s not your fault.

A culmination of words from Alex and Max churn a funnel cloud in my mind. It swirls and spins wildly across the archives of my shame, lifting it from its confines to scatter like ashes.

The paper sheet shifts underneath me as I lean into the refuge of Max’s chest. He wraps me in a bear hug, sighing heavily.

“I wish you’d believe me,” he laments.

“I do,” I answer. The steady rise and fall of his breath ceases beneath my cheek.

“For real?” His voice jumps an octave with his surprise. My heart joins the ascent, growing lighter with each beat of acceptance.

“It’s not my fault.” There’s no hallelujah choir, the sky didn’t open and shine forth the light of heaven, but for the first time, I believe it. It’s not my fault.

bend and break

I
used to be an optimist. I could look at any situation and find a silver lining, regardless of how dire the situation. The first year Peter and I were married, a nasty storm split the Bradford pear tree in our front yard. Unfortunately, my Jeep was parked in the line of fire. I loved that car; she was my baby. Instead of lamenting my tremendous misfortune, I focused on the branches of the tree pressed against the front window. Just another foot and those branches would’ve been parked on the living room couch with me.

It can always be worse—or at least I used to think so. Maybe that’s what has my attention right now: the presence of my long-absent optimism, or perhaps its cautiously optimistic cousin. Regardless, the gentle pull of hope is as foreign feeling as the air cast on my right wrist. Both are exceptionally cumbersome, but oddly comforting.

“You have a hairline fracture of the distal radius, Caroline,” the orthopedic surgeon explains. “It’s a clean break and should heal nicely, as long as you take care of it in the next four to six weeks.”

The last few years have desensitized me to news like this. Between developmental disabilities and seizure disorders, a broken arm is easy. Listening and absorbing the details of how to care for my broken wrist, I am consumed with only one thought:
Thank God it’s already my bum
hand.
Not that I would ever wish to break anything else, but if I had to break something, at least it’s not my dominant hand.

Don’t call it a comeback.
LL Cool J raps a loop in my brain as Dr. Haren goes over my discharge papers and a prescription for pain. I smile and nod, thinking I’ll never fill that script. There’s no way I would ever take something that could limit my ability to get up with Lily in the night. She barely sleeps for six hours, if she stays asleep. Most nights I’m up at least once to guide a sleepwalking Lily back to bed.

Once the good doctor has gone through his spiel, Max and I gather my papers and head out. He holds the door open for me, and as I walk by he plucks the prescription out of my hand.

“Hey!” I reflexively grasp at the paper.

“I’m taking this to the pharmacy to make sure it gets filled,” Max says. “You’ve got that look like you’re considering Motrin and an ice pack for that break.” The steep arch of his eyebrow dares me to argue.

“You got me.” I shrug. “I’m not being stubborn, I promise. I just can’t take those and care for Lily. She’s not a sound sleeper, and those will knock me out cold.”

“Then maybe Peter should keep Lily,” Max casually suggests. It wouldn’t be an issue if it were that simple.

“It’s not that easy, Max,” I defend myself. “Lily has her routine, and after what happened today, she deserves to reap the comfort it brings her. Changing things up will likely cause another tantrum—and we need that like we need a hole in the head.”

“So Peter is just going to go back to his apartment and let you wing it?” I hear the irritation in Max’s tone.

“I don’t know what Peter’s going to do. You’ve been here with me this whole time; when have I had the chance to fill him in? What I do know is Lily’s looking forward to seeing her aunt Paige tonight, because that’s what I’ve prepared her for. She will be thrilled to be going home, because she’s comforted by what she knows. Peter’s place is too new for her to know. Her going there would be a disaster.” I explain the best I can, but no one really understands until they’ve seen Lily go off the deep end.

“Can Paige spend the night with you?” Max asks.

“No, she flies out to meet a client early tomorrow.”

“Can Peter stay at the house on the couch or something?” Poor Max; sometimes there’s no easy answer. Besides, this isn’t my first rodeo.

“
No
, he can’t,” I say with more force than I mean. “I’m sorry. I know you’re trying to help, but it’s complicated, okay? Peter can’t stay at the house. It won’t be fair to Lily when he leaves again.” It won’t be fair to me, either, but I don’t say that. I’ve just started to grow accustomed to my life without him; I don’t want to fall back into bad habits. I don’t want to be lulled back into complacency because it’s familiar and comfortable. So are old shoes, but that doesn’t mean they don’t stink.

We round the corner into the elevator bay, where Max presses the call button. “Then I’ll stay with you,” he offers, leaning against the wall and folding his arms.

“Max, you’re not staying with me,” I argue. I cross my good arm over my sling, and we stare each other down. Pride coils tightly, like a diamondback ready to strike.

“Why is it so hard for you to accept help?” He sighs in frustration.

His exasperation deflates me. Why am I being such a hard-ass? It’s not like I
can
do it on my own. I do need someone with me; Lily’s needs are physically taxing.

“I’m sorry. I’m just used to going it alone. I don’t mean to sound ungrateful,” I say.

“Then don’t be, and accept my help,” Max replies.

“
Ouch.” I laugh nervously. “I guess I deserve that. Thank you for helping.” Saved by the bell—the elevator doors open and I step inside.

Max holds the door open and gives me a Cheshire Cat grin. “Have some faith, Carolina.” He shakes his head. “The three of us will have fun, I promise.” He takes a step back and waves as the doors close between us. “Text me when you’re leaving the EMU!”

There’s no way I’m texting him when we leave the EMU.

mercy

T
he doorbell rings in perfect unison with Lily’s bolt for freedom. My butt hits the floor with a resounding
umph
as I lose my one-armed grip on my wet and squirmy child.

“Lily, wait!” I plead, as I watch her bare bottom disappear around the corner. The only thing covering her is the hooded end of her towel. Terry-cloth pig ears perch proudly on top of her freshly scrubbed head, while the rest flows behind her like a giant pink cape.

“Ah ah ah!”
she shrieks as her footfalls trail off down the stairs. The telltale jingle of the chain on our front door sends me scrambling to my feet, cursing myself for not having engaged the deadbolt. I fly down three steps at a time, racing to make it before she takes off outside.

“Lily, no!”
I yell. “No nakey outside.”

Whoever’s at the door, they’re getting the brunt of Lily’s full frontal right about now. Turning the corner, I’m grateful to find that Lily has attempted to drape herself in her towel. She’s giggling up at Max, who’s smiling at her from the doorway. She flaps her hands and turns her mischievous smile on me. I’ve come to accept the hand flapping and toe walking as a part of Lily’s personality, not her disability. An occupational therapist gave me several sensory explanations, but learning to see it as a part of Lily and not just a therapy goal brought me closer to
my daughter. She hand-flaps when she’s really excited, not just when she’s looking for sensory input. She toe-walks when she’s agitated, not just when she’s being tactile defensive. Don’t get me wrong; therapists have helped Lily tremendously. However, they’re appointments that we work into our life, not a life lived inside of them.

“Maxy bring pizza, Mama.” Lily beams. Max gives one of the pig ears a gentle tug as he greets my girl, but shoots me the hairy eyeball through his periphery.