Every once in a while Sophie would shout something unintelligible during church. No, shout’s not the right word—more like interject. She interjected while the pastor was talking or after the singing was done and people settled into their seats. She may have thought she was contributing, or maybe responding to something she needed to respond to. Maybe it was purposeless, a coordinated release of intention directed at no one and for no reason that I could tell. I adjusted her blanket and gave her my hand to squeeze; that usually soothed her.
Sophie always liked holding my hand.
“You should have another one as soon as you can,” my mother told me when we finally found out what was wrong with Sophie. She didn’t wait to hear the doctors’ prognosis, what her prospects might be, best and worst case scenarios and all that. She said, “I know you and Josh aren’t thinking about it right now, but, sweetie, it’s the only way to move on.” Then she told me about a friend of hers whose first child had had muscular dystrophy, the bad one, the one where they don’t live past their teens, and how it wasn’t until they had their second child a couple years later that they finally had hope again. “Sophie’s beautiful, honey,” she assured me. “She’s a blessing from God, sent to strengthen your faith. And we’re all gonna love her just like any other child. But you’re just gonna grieve and suffer with her until you have a normal one to pour your love into.”
Sophie was a few months old when I got that advice. She cried all the time and all the earnest suggestions everyone had given us as new parents—car rides, gentle rocking, singing, you name it—didn’t do anything. We knew something was wrong pretty early on, the way her limbs bent and swayed unnaturally, how she choked all the time when I fed her, her glossy eyes that never caught mine or anyone else’s, even for a moment. I always watched when other people baby talked or cooed to her, hoping someone might get through, find a reaction, anything.
It doesn’t have to be me. I’ll take anything, I told myself. And I would have.
When she turned ten, all I wanted was for her to get to thirteen. It didn’t make any sense, of course. I mean, what did the length of her life matter? She wasn’t going to unlock any dormant abilities, start walking and talking all of a sudden. But the number loomed there anyway like a terrible and needed prospect. I suppose it was that thirteen was a teenager, a big girl, and they said she wouldn’t last past three or four. So it was like an accomplishment I could hold up to God, or the universe. Whatever. I could say See, I got her this far. Now you get her back, but she was here for thirteen years with us. With me. Don’t you forget that. But it wasn’t even God by then, to be honest, just some passive listener in my head, like when kids talk to themselves.
Sophie didn’t make it, though. She died a week before her thirteenth birthday. Her little soupy lungs that never quite gave her all she required finally petered out as she lay on her side with her eyes closed, the NG tube indenting a groove into her hollow cheek, her hand folded into mine in a one-sided clasp.
Early on, I learned to speak the language of impairment. I made sure I could catalogue her symptoms and conditions, using the scientific terms and translating dutifully when I got a blank stare. But eventually the need to do that waned and I started clipping my explanations to just the basics: “She’s got a bunch of genetic problems” seemed to get it across well enough, and hardly anyone pressed for more.
What more could they want? I remember thinking. It was obvious that our daughter’s blueprint was incomplete, rearranged; did the actual culprit matter?
Sophie hardly ever smiled.
When she did, it was more of a sly smirk. The word for it is hypomimia, but by the time I learned it I was far past the stage of wanting to use it. Josh and I called it her poker face; we joked that she’d slay in Vegas. She was happy, we thought, or at least content, though she regarded the world most of the time with a thin-lipped nonchalance and her eyes, usually behind glasses, rolled over it all seemingly unstirred. Her daddy could make her laugh sometimes with his goofy looks and tickles, but mostly what she appeared to register, at least to me, was dispassion.
People said things like “She’s such an old soul,” or “You can’t fool Sophie.” Someone told me once “It’s like she sees us all for what we are.”
Good grief I thought under my smile. Any other hidden gifts I should know about?
I wonder what my face looked like when I heard people exalt her like that. Because we knew, Josh and I knew, what was likely true and what was not and could not ever be true. I mean, what hidden wisdom or discernment could she have when the tests all came out the same: low IQ, minimal language, deficits in nearly every area they had a name for? But that didn’t matter; people saw and projected what they wanted all the same. They took their lessons as though from a mountain top sage and walked away better for the encounter, having been given perspective, I assume, while Sophie took on their good intents and wore them like an invisible laurel.
St. Sophie the Redeemer, she became. Sophie the teacher.
We did end up having more children. Sophie’s two sisters arrived soon after her, as if they had to, as if they ballasted the vessel that was our family and had received such a jolt right after embarking. And they did dull the sting and move us forward, just as my mother said they would.
I could never bring myself to tell her she was right. But really, I didn’t have to. She could see it clearly enough every time our other children lit up my face with their reciprocity: their natural, effortless response to being loved. At first I tried to keep my mother from noticing that joy. I felt guilty that it was there. I played peek-a-boo with Kiera on the sly, held my full laughter in when Brianne babbled and trilled to my playful faces. But I gave up hiding it eventually. Their normality was simply too wonderful and soothing to witness, and Sophie’s lack and stuntedness too profound. Who wouldn’t notice the difference? I told myself. It was like night and day.
We thought Sophie was content behind her usually stoic face, and maybe she was. But, goddamn it, the poor girl couldn’t catch a break.
Her bowels never worked right, even with the daily MiraLAX and probiotics, and her struggles only worsened as she learned to dislike the act of releasing them. We resorted to running a bath every few days and just letting her shit in the warm water. And although she was as flexible as a contortionist—her hypermobile knees and ankles could extend her cross-legged pose pretzel-like so her feet nearly folded up onto her thighs—she strained and snapped with the brittleness of an old woman. There were so many, too many, wraps and casts through the years, especially for a girl who never propelled her one and only body headlong over the terrain of childhood like other kids. I remember the pink cast right now, swallowing her wrist after the baby gate didn’t close one day and she fell down the short flight of stairs going into the family room.
For a while the doctors and OTs talked up the prospect of leg braces and we all swelled with hope. Then when they couldn’t hold her up for more than a few seconds, the experts encouraged a walker, though in more guarded tones this time. “It’s best to manage expectations,” one of them advised.
Christ, I thought, I should’ve tattooed that on the back of my hand after we left the hospital with her.
I still have a picture of Kiera helping her big sister stand with her brand-new walker. Kiera was so excited to show her how, cheering her on with all the zeal of her four years. She helped Sophie every day for a week, getting on hands and knees to stabilize her ankles, sliding her unwieldy feet across the carpet, but soon Sophie’s legs began seizing up, her face contorted with pain and effort, and her wheelchair became the only option. Kiera put stickers on it and they painted the wheels together, but I could sense disappointment in her, my second child, or maybe it was her first taste of resignation, as though she understood even then in her tiny mind what I couldn’t keep from her: that if there is a god, he might very well give, but then he takes, and he takes, and he takes.
Why is she here? I asked as much to myself as to anyone else.
The thought hovered around me more often than I would admit to anyone, even Josh. He never questioned it, at least out loud. For him, it seemed enough to scoop Sophie up and hold her with her head curled into his neck, telling her he loved her, that she was his angel. She liked to sit on his chest and quietly scratch the words or pictures on his t-shirts while he lay on the carpet, gazing up at her and smiling.
But I wasn’t satisfied. I begged the question, perpetually: For what purpose?
When Sophie was around six or seven, a fellow mother at the church we were still attending sent me a well-meaning email with a YouTube video attached. There was a middle-aged man with strong arms and a determined jaw pushing the wheelchair of his severely disabled son, a man in his twenties, past the cheering crowd at a marathon finish line, triumphant music soaring. It went on to show the duo competing in an Ironman, the man pulling his son’s rubber raft with a harness like a commando storming the beach, then it cut to an interview with the father sitting at home in his study surrounded by photos and mementos of their efforts. “He gives me purpose and strength,” the man said to the interviewer, his eyes glistening. “I’m just loaning him my arms and legs when we’re out there; he’s the one racing.” I closed the video and thought of a Dostoevsky novel I had read in college—another cherished enjoyment of mine that I’d never get to share with my first born—and I vaguely recalled a young character, an invalid of some sort, epileptic or crippled, maybe, and two men arguing whether the girl had been stricken merely for the edification of all who saw her, a kind of born instructive example. I took the book down from the shelf and thumbed through it. When I found the passage, I realized that I’d misremembered it. The debate was over a different question: whether a child could be tortured to purchase the world’s happiness. I closed it with the word “torture” still in my mind.
Maybe that’s what stuck with me, I thought. Maybe that’s why I remembered it wrong.
I watched absently as Sophie was admitted to the hospital the last time, as if it were a scene, a production that had once carried immense weight but now could unfold with or without my participation—without my existence even. Most of the staff knew us by name, some from as far back as the beginning, before surgeries and overnight tests became as regular as parent-teacher conferences. This time it was her heart. We were there to get an ICD put in to check its increasingly irregular rhythm. I half-listened to the surgeon go over it all once again.
All I could think was something cynical like The clock’s been ticking since she was born; wonder how many hours this will add?
Sophie squeezed my hand and moaned evenly as they wheeled her to the operating room, then squeezed it again when she woke up. Her eyes found me first, then her father and sisters as we all ringed her bed, speaking to her in turn: “Hello, sleepy head… There’s my brave girl… Look, Soph, I brought you your mermicorn squishy…”
She never left her bed after that.
First it was an infection—most likely iatrogenic because, like I said, that was her luck—then slow organ failure. No one could quite explain it, although they tried. I’ll give them that. On good days Sophie could sit up propped by pillows, cross-legged in the same position she assumed at home in front of the living room sofa, watching us all with that inscrutable expression of hers. The NG tube was eventually added and oxygen stayed on all the time now. I couldn’t do anything except lie beside her night after night in that hushed room, close enough to hear the cannula’s steady and gentle hiss filling Sophie with life that wouldn’t last while her own spark, precious and singular, diminished.
I knew it was coming this time. I could sense whatever it was—as certain then as I am now that it’s nothing at all—closing in to snuff out the faltering, muffled light: a light that never beamed as most others’ do, that never had a chance to.
The next morning, Josh and the girls packed up all that would be going home with us. I wasn’t good for much, could only sit in the green vinyl chair with the hard cushion and stare at the whiteboard next to the door. During the night or early morning, someone had adorned it with a drawing of several hearts and a pair of angel wings in a farewell message:
“Sophie is now home in heaven,
It was intended, I supposed at the time, to lift my remaining girls’ spirits. They’d tried to stave off sadness in the last days by telling each other how happy their big sister would be once she was finally free of her body and at peace. I recall the nurses encouraging and commiserating with them while I looked beyond the vertical blinds to the parking lot below.
I was the last one to leave the room. On the way out, the bottom of my fist made its way to the whiteboard as I passed and erased the words one after another: “heaven,” “home,” “Sophie.” Then I pressed my index finger to one of the bubbly red hearts, tracing it carefully until it vanished.