Capable Magazine

By Rebecca Evans

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I curled around my disabled toddler in his tiny bed. I’d slept with him since his seizure-like episodes revved to several times a week. His skin grew gray and I grew terrified, aware, in the morning, he, lying next to me, might awaken cold. Still. Lifeless. 

Zach’s body, ten pounds and fragile for an almost-two-year-old, convulsed. Soft, bubbly-foam trickled from his mouth without warning. After, his eyes glazed, his mouth sagged. He seemed “out of it” for ten minutes. Maybe twenty. I documented the “events” in a notebook I carried. ALL THE TIME. When you parent a special needs toddler who uses a communication board and sign language, coupled with a high threshold for pain, you are not just a mommy.

     You are an advocate. 

     You are an interpreter. 

     You are a medical interventionist. 

     You are alert. 

     You are also worried.

*****

We hand out hearts, often on Valentine’s Day. We buy them, candy-coated or sweet-tart-ish with aphorisms stamped into chalky sugar. Be Mine or Forever Yours or True Love. We hand over our hearts on other days too. Not the ones stenciled on red and purple construction paper. Our emotional-hearts. And I wonder the scientific correlation between feelings and the cardiac organ. Why isn’t the brain part of this equation?

*****

Following months of inconclusive tests, we finally met with a pediatric neurosurgeon, Dr. B, and before we could settle in, he said, “Though seizure-like, these are not true seizures.” 

    “They seem like seizures,” I said. I had done my research. I knew the risks and results. Cumulative seizures impact cognition and alter brain structure, causing significant deficits and impairment, including behavioral abnormalities. At this point in Zach’s life, thirteen surgeries plus hospitalizations, I had learned that early intervention was key, preventing future suffering.

    “They look like seizures. They act like seizures. The way you describe them, they even sound like seizures,” he said. “But I’ve not seen one of these ‘activities.” (Yes, he quoted his hands.) “I’m telling you, he’s not having seizures,” Dr. B barely looked at me. 

    “There’s something terribly wrong,” I said, and quieter, “I have this bad feeling.”

    “I’m telling you, when it comes to the brain, I’m God. There’s nothing wrong with his brain,” he said.

    “I’m telling you,” I stood, stepped towards him, our eyes met. I ached to poke his chest, wanting his attention, wishing I could shake him awake. “When it comes to my kid, I’m mom,” I said. “I trump you. If something happens...you’re accountable.” 

    I carried Zach from Dr. B’s office, both of us crying, though Zach’s tears were most likely sympathy-weeping for me. Or absorbing my fears. Or both. After a few days, I secured an appointment with Zach’s cardiologist, Eloisa. A heart doctor with heart. 

*****

“I get that they don’t think these are seizures, but look at him,” Eloisa said. Zach resembled a retired old man; ashen-skin, purple quarter-moons beneath his eyes, shoulders slumped.

    I nodded. 

    “His color...” I said. I held him closer.

    “I agree. Something’s wrong. Let’s get a plan,” she said, and I loved her for all of time. 

    She swung round on her rolling chair, ordered a heart monitor and a neuro-monitor. 

    “The difficulty in capturing one of these is that you’ll need to press the button almost before they happen,” she said. “That’s how we’ll know the cause.” 

    The staff attached numerous electrode-leads, his sweatshirt concealed wires tangled across his chest and abdomen. His head swathed in gauze to cover cables. A small backpack stored the monitors. He didn’t mind. He walked on his deformed feet with that pack like he owned the universe. I still have a picture of him like this, cruising down a sidewalk, his back to me, the path curving before him. His determined steps pushing beyond man’s limiting beliefs. 

    It took another month before I “caught” a seizure.

*****

Zach sat arms-length across from me, his legs splayed, frog-like. I rolled his ball, half his size, and he placed hands on top, “catching it,” squealing. I looked up and his eyes stared beyond me. 

I reached. 

Grabbed the remote. 

Pressed the button. 

He seized. 

I shuddered. 

I cradled him as he rolled, pulling him into my arms, his body twitching. I spoke, hoping to calm him, hoping he heard me.

    It’s all right.

I promise.

We’re going to figure this out.

Mommy’s here.

I got you.

    Then he stopped. I checked his pulse. He had one. Barely. I checked again. I pushed the button a second time, indicating this moment as the “end” of the event. I remembered to record the time in my notebook. 

*****

In third grade, I’d opened my Valentine’s holder, made of Paper Mache, much like a worn paper lunch sack bled through with pinks and yellows. It was mostly empty, and I discovered that Troy Browning, the cutest guy in the entire school, hadn’t bothered to sneak a special card to me. I swear it felt my heart had stopped or slowed significantly. My crush crushed. 

*****

“Bradycardia,” Eloisa told me.

    “What’s that?”

    “His heart slows to the point that his body defribs itself, like Electrical Cardioversion.”

    “I don’t know what that means.”

    “He needs intervention,” she said, and the whirl-of-schedule-beyond-coordination began. 

We’d fly from Idaho to the Chicago Children’s Hospital. 

We’d leave the next day. 

Zach and I would stay at the Ronald McDonald House. 

This would be my second stay at an RM. My first time; Zach’s first six weeks of life, I lived at the RM in Boise, across the street from St. Luke’s NICU. Across the street from all that mattered. 

*****

Bradycardia, a condition when the heart beats too slow, can be serious. The doctors’ concern involved the risk of blood supply, or lack of, to Zach’s organs, especially his brain. The doctors in Chicago still wanted to rule out any true seizures. Upon arrival, we’d visit a neurosurgeon. 

Again. 

    “I don’t see any concerns regarding his brain. My suggestion is to place a pacemaker, monitor him a few days, see if that stops these events,” he said. 

I agreed, unsure if I should feel relief or worry.

He continued, “so I’ll leave it to those in charge of the lesser organ, the heart. We’ll get this scheduled first thing in the morning.”

    The heart was the lesser organ. 

I thought the heart held it all. 

Apparently, without the brain, nothing works. 

Maybe not even our emotions.

*****

There’s a flower-crowned skull, allegedly belonging to St. Valentine, on exhibit in the Basilica. I find it interesting that, though St. Valentine is considered the saint of courtly love, he is also the patron saint of epilepsy. 

*****

The night before surgery, Zach remained at the hospital and I returned to the RM House to shower, to change, to get my bearings. I needed distraction, so I planted myself in the community lounge. The couch’s arms worn as much as the seat, most likely from concerned parents scratching in their fingernails, much like I found myself. Shortly, a black man, probably mid-thirties, joined me. I nodded Hello. He did not. He wore crinkled jeans, tennis shoes, and a plain white tee. He could have lived in those clothes for days (like me), or freshly donned them this morning. As soon as he sat, he began sobbing, unabashed, his shoulders heaving. I didn’t know what to do, though I felt like I should offer an embrace of some sort. I waited.

    “You Okay?” I asked once he quieted.

    “My son. My boy,” he spoke in whisper-breaths.

    I maintained silence, afraid to hear what his heart needed to say.

    “It was a headache, man, that’s all it was,” he said. “He had a headache and I was an ass about it.”

    I nodded. 

The man watched his feet and kept talking. 

I kept listening.

    “He woke with a headache six weeks ago. I thought he was trying to get out of school or something. He was only eight. Eight years old,” he said. “I made him go to school. I told him to be a man. What kind of dad tells his eight-year-old son to be a man?”

    He continued, “I got the call at work. An aneurysm. It wasn’t a headache. He stroked.”

    He sobbed. 

I sobbed.

    “We pulled the plug today. Just an hour ago,” he said.  “He’s been dead this whole time, but my wife, she just didn’t want to pull it. Don’t get me wrong, I didn’t want to either, but I couldn’t watch him lay there, already gone, and our other kids, home, without both of us. I should’ve listened to him. I should’ve taken him to the doctor for that stupid headache,” he cried, holding himself, rocking himself. I moved to the chair next to him, my arm around him, crying and rocking with him. My son’s heart condition seemed small in comparison.

*****

Valentine must have known. The brain holds the most power.

*****

Zach’s surgery was uneventful, which meant success. After, the nurse escorted me to him, and I held his hand. He woke and, while in recovery, still on the table, he had an “episode.” I watched the monitors, watched his heart stop, the beating dropping to nothing. I watched my son die. 

     It didn’t work. 

     Something inside screamed. 

     No. 

     Not now. 

     Please. 

     Don’t go. 

     Don’t leave me. 

     Please. 

     Please. 

     Stay. 

     Stay here. 

     Stay now. 

    I don’t know how, but time slowed, the brain moving like molasses. Maybe because the heart moderates blood flow, limiting oxygen. As you move in this state, you sink into a decelerated cadence. Maybe even odor drifts in reduced rates. Senses restricting the body to protect the psyche. Time does stand still.

    A whiff of stainless steel mixed with anesthesia. Metal and medicine. The lights, dimmed for a calming post-op environment, blasted into blinding fluorescent. I wondered if the team would launch into CPR in front of me or if I would be asked to leave. 

I would remain. 

I would insist. 

That pacemaker jumped. Rescued him. His body ceased twitching. The medical team cheered. I couldn’t tell you what they did while he was dying. I don’t remember much as that room shrank and then grew. After, I hugged someone standing beside me, a nurse, a doctor, I’m not sure. My knees weakened, my pulse steadied, and I knew we had an accurate diagnosis. We forget medicine is a practice, imprecise.

*****

The night following Zach’s surgery, I ate the worst lasagna. I rarely consume lasagna, it’s a tough meal for a kosher-keeping Jew, picking meat out of cheese, swallowing mostly noodles. The meal, family-style at the RM House, was prepared by a group of college students. I felt obligated. Perhaps this was my only community, the kindred parents with medically ill children, gathering for a meal like a family would. 

Because we were.

    The staff pushed together tables, creating a long last-supper look. More students than families collected around, and you could tell who was who, not because of age, but wear and tear. Images of me at the time look haunted: dark-plum-shading beneath my eyes, my hair tangled, and the same sweater-jean combo for days.    

    When you live at the RM, you forget to eat, forget the world moves without you while your existence stays static. You feel abandoned. 

These students thought of us, our plights. 

Kindness at the core of the human heart.

    “What made you decide to make a meal for us?” I asked one student.

    “It’s Thanksgiving.”

    In this space of medical survival, there is no calendar, no star light reflecting the day’s end. 

*****

Since my third-grade crush, I’ve fallen in love 33 times. Okay, that’s a lie. It’s just that 33 is my favorite number and when I try to add up my loves, I confuse myself, wondering what, or who, determines “love?” Teen idols? Celebrities? The brown boy across the street in Cedar Lake, Indiana? Girl crushes? The camp counselor from fourth grade at least 20 years my senior? 

The thing about my heart is that it has steered clear of proximity. I’ve fallen for the impossible; the distant and unavailable people. If anyone expressed attraction to me, I bolted. Or napalmed them.

*****

The “de-briefing” following Zach’s heart surgery:

• Keep him clear of microwave ovens.

• Keep him clear of power tools.

• Don’t allow him to stand near a metal detector longer than necessary.

• No MRI’s, meaning Zach’s pituitary cyst would no longer be tracked.

• Avoid powerful magnets (what does this mean?).

I carried this list home. They prescribed a monitor linking my house phone, “reading” Zach’s beat, transmitting data to his surgeon in Chicago from the edge of Idaho. A Metatronic card, much like a credit card, was also given to me. I handed this to airport security, allowing my son past detectors that risked throwing off his pace. Or stopping it.

*****

Today, my heart beats fifty times per minute, as if it might lose energy, as if it needs less fuss to maintain a pump. I believe we exist with a limited number of heart beats. Maybe my heart doesn’t want to waste any. Or maybe my heart is crinkled like my Valentine made from sticky paste and crunched-up paper. The one stamped, Hope. Valentine’s a Christian saint, and despite my Jewishness, I celebrate this day, making heart-shaped pancakes sprinkled with M&Ms for my family, giving Zach an extra helping. 

*****

On the plane trip home three days after Zach’s heart surgery, he walked around in his stitched-chest, cleaning surrounding seats with hand-sanitizer wipes, the ones I packed to prevent exposure to infection. He swiped the arm rests, saluted the elderly gentleman two rows behind, curtsied the flight attendant. He made friends. He gestured me numerous “thumbs up,” as if I got things right. I felt I did. My face flushed with blood, my heart working better, and Zach’s color no longer slate, his flesh-tone returning. Life returning. My own heart less heavy, if the heart holds weight at all.

I believe mine did.

​

It still does.

​

Sometimes mountain-weight compresses against you when your child, the human once inside you, walks around on the outside of you and there is little you can do to remove crippling fear, that terror of their absence the next day, the next hour, the next moment. All you can do is contain it, hold it in your heart, hold it all together, unthink the worse, all the while, willing your brain to keep telling your heart to beat.