Burden of Love

lifelovehope
By Gina Easley www.GinaEasley.com

By Maggie Thach

It was 2:12 a.m. I woke up to what sounded like a stick being ripped across a wooden fence over and over again. My muscles tensed but soon settled when the familiar sound sunk in. I looked over at Mike sleeping next to me. My brother’s croaking hadn’t woken him yet.

Ghandy was wide awake, and the cacophony emanating from him proved it: his open palm driving his bottom row of teeth to collide with the top, his teeth clicking in rapid succession, his knee slamming against the hollow wood floor. All these tics had the paradoxical quality of making him feel comfortable in a new setting.

My mom and brother slept on an air mattress in the living room ten feet away from our bedroom. My dad was on the couch. In my hundred-year-old apartment with no proper doors to separate the two rooms, a typical scene played out between my parents. Since Ghandy was born with brain damage twenty-seven years ago, they have always argued about how to take care of him.

“Don’t force him to go back to sleep,” my mom said. “Just leave him alone.”

“He was too hot,” my dad said. “You should have taken off his long-sleeve shirt before he went to sleep.”

“He’s awake because he had a wet diaper. You gave him too much water before bed.”

“Godammit.”

My family was in town visiting. And like a good Vietnamese daughter, I invited them to stay at the apartment I shared with my boyfriend.

The noises didn’t bother me. I had learned to sleep through them a long time ago. But a pulsating feeling filled my stomach, like my heart had slid out of its proper place to a spot right behind my belly button. Even though I was in my bed in my own home, I had the feeling that my family and I were being stared at and judged. Ghandy waking up in the middle of the night was nothing new for my family, but having Mike there caused a tension that I didn’t know how to quell. When it comes to Ghandy, my parents’ attitude is that Ghandy comes first, and everyone else can adjust. I felt like my family had just become a huge imposition on not only Mike, but our upstairs neighbor, who I was convinced could hear all the commotion as well as we could.

This made me feel like a helpless little girl again. When people used to ask me, “What do you want to be when you grow up?”, I replied with what I thought they wanted to hear. “I want to be a doctor or a lawyer.” But what I really wanted to say was, “I want to be normal.” Growing up, my family was different. We were the only immigrant family on our street. We were also the family with the retarded brother. People looked at Ghandy like he was an animal.

Ghandy’s noises grew louder. Mike was now awake. He wrapped a pillow around his head, though it was useless.

“What’s wrong with your brother, Maggie? Can we do anything?”

“He just woke up. I don’t think he’s going back to sleep.”

“I didn’t realize how loud he could be.”

“I know.”

“I just feel bad for our neighbor upstairs.”

I didn’t reply, just turned my back to him and pulled my knees up to my chest. In that moment, what I had feared for the entirety of my adult life was impossible to ignore. My parents will pass away one day, and Ghandy will need someone to take care of him. As the oldest, I knew this responsibility would most likely be my inheritance. I had promised my parents that Ghandy would never end up in an institution or a home. But it was scary to think about what this responsibility would hold me back from. Would it keep me from traveling? From having my own family? Would Mike be willing to take on this burden with me? Would anyone?

•••

My brother was named after Mahatma Gandhi. Just like mine and my sister’s before him, Ghandy’s namesake was a world leader whom my father admired. I was named after Margaret Thatcher and my sister after Golda Meir. Ghandy is a name that my brother has never been able to say himself, a name that holds significance he will never understand. Throughout my childhood, my parents referred to Ghandy as sick. I only came to the term “cerebral palsy” after accompanying my parents to numerous doctor appointments.

As the oldest sibling, my instinct to protect Ghandy was especially strong. My dad took us to the doctor once, and records showed that Ghandy and I needed some vaccinations. I wanted to be brave and go first. Still, I was scared. I had the urge to pull up my legs, which hung lifelessly a foot above the ground, and make myself into a tight ball. The nurse lowered the needle to the taut flesh pinched between her fingers. My breathing quickened, and I had to look away as the needle punctured my skin.

“See, that wasn’t so bad.”

“That kinda hurt,” I said. “I think my brother’s gonna cry a lot.”

I looked at Ghandy, took his hand and caressed it. He had the cutest hands—soft skin, portly fingers, chubby palms; the only blemish was a wart by the knuckle above his left-hand middle finger. The wart bothered me. I picked at it, hoping it would fall off. Ghandy reacted as he usually did, looking around the room like voices from different directions were calling his name. I stopped obsessing about the wart and started to sing his favorite Vietnamese nursery rhyme. He smiled and laughed.

“There. All done,” the nurse said.

“All done?”

I learned something in that moment. What worries me doesn’t matter to Ghandy. The beautiful thing about him is that he doesn’t know fear. He only knows what it is to be loved. Since he was born, he has been the center of my family. It is an unspoken truth that my brother will always be taken care of.

This truth has been too heavy to bear at times. It feels like an impending sentence, ominously lurking somewhere in my future. I never know when it will happen, only that it will. To soothe this anxiety, the only remedy that I’ve come up with is to avoid what is inevitable. But as I get older, I know I can’t keep putting off this reality. Ultimately, this is the thing I’m scared to face: that when I become Ghandy’s sole caretaker, his life will eclipse mine, and whatever I have done or accomplished in my life will mean nothing.

I want to be a wife. I want to be a mother. I want to be a writer. I want my own life. Having a brother like mine, does wanting these things make me selfish?

This was the question that circled my brain since Ghandy woke up. As morning approached, Ghandy’s croaking turned into cooing. Still, it was enough to keep Mike up. Around five a.m., Mike got out of bed, put on some headphones, and did some work. I didn’t know if he was mad or not. I was afraid to ask.

My brother was able to sleep well for the rest of the trip, although that first night had planted a seed of dread that grew for the remainder of my family’s visit. After they left, I knew I had to talk to Mike.

“Mike, can I tell you something?”

“Yeah. What’s going on?”

“I don’t know what’s going to happen in the future, but I know I’m probably going to have to take care of Ghandy one day. I’m really scared because I don’t know if I can do it alone.”

My eyes fell to the ground. There was a possibility Mike would give me the look that said, This is a big responsibility. This is asking a lot. I wanted to avoid that look if possible. I didn’t expect the next thing to come out of his mouth.

“Maggie, you’re not going to have to do it alone. Me, you, your sister, and her husband—between the four of us, we’ll figure it out.”

After all that time wondering what would happen if Ghandy were to hijack my life, this was all Mike needed to say to make me feel that this fear was conquerable, that he would help me find a way to make it work. That I wouldn’t be alone.

•••

On a typical Wednesday morning, Mike and I woke up the way we always did. I was barely cognizant of his alarm going off. He threaded his arms through mine and buried his face into my neck. We always say how this is our favorite time of the day. We’re not watching TV, or eating, or doing something else. We’re just together. I told him everything that had been on my mind that I was too exhausted to tell him the night before.

“There was this article I read yesterday about how little women know about their fertility,” I said, half-awake. “At thirty, your fertility is affected. At thirty-two, it goes down significantly and then at forty, it can be pretty hard to get pregnant. I mean, I have a couple years, but it’s just a lot of pressure.”

“Then let’s get married soon.”

“Okay. Sounds good.”

“No, really. Will you marry me?”

“Yeah, of course,” I reflexively mumbled. I forced my eyes open when I realized what he was actually asking. I turned around to look at him. “Wait, seriously. Are you proposing to me right now?”

“Yeah. I don’t have a ring or anything, but, yes, will you marry me?”

“Yes. I would marry you a thousand times.”

After we kissed, I pressed my face into his chest and took a deep breath. I was overwhelmed. He rested his chin on my head and held me while I cried.

Since then, some people have asked me about his proposal, anticipating some kind of get-down-on-one-knee, ring-hidden-in-a-fancy-meal story. Sometimes I feel bad that I can’t deliver the story they want. When you get engaged, you feel there are certain expectations you need to meet. I’ve learned things don’t always go as expected, though. The life I will eventually have won’t be what I envisioned when I was younger, but acknowledging all the obstacles that might lie ahead makes them easier to face.

When I go home, I am in awe of how my aging parents take care of Ghandy. They change his diapers, apply lotion on his face, feed him every meal. And yet they never complain. My dad hauls Ghandy in and out of the shower and shaves the small patch of hair on the left side of his chin. My mom pats Ghandy’s back before he goes to sleep and gets him ready for school in the morning. This is the easy stuff.

What’s harder for me to deal with are the stares that Ghandy attracts in public. The same protective instinct that drummed through me as a little girl is still as strong today. This sets off a perpetual preoccupied state of mind. I get angry, I get defensive, I feel shame. And then I just want to disappear. I can’t be in the moment because these feelings are cycling through my head. But Mike often reminds me that this is family, and you can’t change your family; you can only accept it.

I know taking care of Ghandy will feel like a burden at times. I might revert to that self-pitying mindset that engulfed me when I was younger: looking at people who I think have perfect lives and wondering why I was given the heavy load. But just as my parents have had each other to lean on in caring for my brother, I, too, will have someone to help carry the load when it seems insurmountable. Mike has lifted that looming dread that has afflicted me for so long. In its place has come acceptance and the reassuring knowledge that Mike will be there to help me, no matter what our future holds.

•••

MAGGIE THACH is a writing and literature teacher living in San Diego. Before she received an MFA in creative nonfiction from the low-residency program at UC Riverside Palm Desert, she was an award-winning sports journalist at The Salt Lake Tribune. She was recently selected as a 2015 Peace Writer for the Joan B. Kroc Institute for Peace and Justice. In this position, she will be paired with a female human rights advocate from around the world and document the advocate’s story of living in conflict and building peace in her community and nation.

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The Dance: Dad’s Lead

bethbride
By Beth Hannon Fuller www.studiofuller.com

By Sarah M. Wells

“What song do you want to dance to, Dad?” I asked, scrolling through lists of popular father-daughter dance songs.

Nothing seemed right. No Michael Buble or Paul Simon or Stevie Wonder would cut it; this, after all, was my father—my flannel-shirt-and-faded-blue-jeans, muddy-work-boots, calloused-hands, five-o’clock-shadow, “fetch-me-a-Miller” father. What qualified as “our song?” Maybe “Feed Jake.” Maybe “Friends in Low Places.” Maybe “Act Naturally.” Maybe “There’s a Tear in My Beer.” Hank and Garth and Buck and the Pirates of the Mississippi sang about misery, friends, beer, and mama; they didn’t sing anything about their daughters.

By the day of our wedding, Mom and Dad had settled on a song. “It’s a surprise,” they said.

Four months earlier, I had come home from college graduation with my boyfriend who they liked well enough but were still warming to, and an engagement ring. Brandon had asked my dad’s permission first, of course, out of my hearing the day before, and Dad had said yes—he hugged me extra-long before I left, cap and gown still on.

In the early planning days, Mom and Dad offered to write us a check instead: big party vs. down payment on a house. We waffled for a day or two, but in my head were visions of a white dress and a man in a tux waiting for me, dreams of dancing and spinning under a spotlight, all of our friends and family clapping and celebrating.

It was my day to plan, along with my mom, who navigated the wedding planning with me like she was my maid-of-honor. Mom and I picked the flowers—sunflowers and blue delphinium—the same that decorated the cake display we chose. We taste-tested the catering, got weepy-eyed over my bridal gown and veil, and designed the party favors together. The reception venue was our decision, too, even as my soon-to-be mother-in-law raised her eyebrows and said, “Really, a barn?”

After the father-daughter dance to whatever song Mom and Dad had picked, Rhonda and Brandon would get the party started. Rhonda’s choice for the mother-son dance was easy: Louie Armstrong would sing “What a Wonderful World” for thirty seconds, then the record would screech to a stop. Brandon and his mom would look confused for a second until Lou Bega’s “Mambo No. 5” would begin to play. It fit them perfectly.

I wrote the order of music and communion and rings; I designed the program and inscribed a poem; I recruited our friends as musicians. Brandon and I selected most of the songs and all of the Bible verses for the ceremony. We picked the pastor and the bridal party and the style of music to be played at the reception. We determined the flavor of this wedding, and this wedding would taste just like us.

The guest list: that was their decision—the parents—and it grew, and grew, and grew, until we all silently stared at it sitting on the kitchen counter. Who could we possibly cut? No one. Maybe there were a lot of other commitments that weekend, and the guest list would just… trim itself. Maybe in true Father of the Bride fashion, we could declare, “Well, cross them off, then!”

Also their decision: the alcohol. We toyed with the idea of a dry wedding for about a twelve-hour timespan because Brandon had just gotten a job at a new school, and we weren’t sure yet exactly how conservative they were. A few of his new employers made Round One of the guest list. It hadn’t been decided if they’d make the Round Two cuts.

“You want a what?!” Dad asked, his voice rising steadily. “We are not going to invite all of our friends to a wedding and not have alcohol. What kind of a party is that?”

“But, Da-ad,” I said. “We just thought, you know, the school… and maybe…” but it was no use. My excuses were weak, anyway; it wasn’t like Brandon and his family and our friends and our relatives never kicked back and drank a glass of wine or a can/ six-pack /case of beer, so why pretend otherwise and ruin a good time? Besides, it was Dad’s call. Dad’s decision. Dad’s lead.

So, okay, beer and wine, Dad. And yes, invite all of those people, even those people I won’t know when they come through the receiving line, and I’ll look at Brandon and he’ll look at me, and we’ll both smile and shake their hands and give them hugs and thank them for coming. And, okay, yes, pick our father-daughter dance.

•••

Down the aisle we went, Dad in his black tuxedo looking sharp, no John Deere hat to cover his balding head or shadow his features. His hand was tight in mine, tense against a few hundred sets of eyes that watched us while we two-stepped—left-together, right-together—our paces matched, the Fugman stride slow and easy like a mosey.

I saw only my future husband at the end of the aisle where Brandon waited for me. When we reached the pastor and he asked, “Who gives this woman to be married to this man?” Dad answered gruffly, “Her mother and I.” I turned my gaze back to him for just that second and wrapped my arms around his neck, and he held on, squeezed and squeezed, then released me to my groom, taking his seat in the sanctuary while I remained standing.

Later, after the bridal dance ended and I parted with a kiss from my new husband, our spunky blue-haired emcee called Dad onto the floor. Dad had donned his Father-of-the-Bride ball cap as soon as the wedding ended and wore it now as he met me for our dance. The bubbles from the bride and groom dance settled and popped on the dance floor. A slow piano, slide guitar, and light percussion played.

The cut-time of Mickey Gilley singing “True Love Ways” carried us along the hardwood, Dad’s calloused palm in my manicured hand. I smiled, even though the tune was unfamiliar to me. I guess it went to number one on the country charts in 1980, the year my parents started dating. Dad would sing it to her in the car as it played on the radio. So romantic, Mom says later. But this was our dance, our slow turn under the spotlight. It didn’t seem like the right fit—know true love’s ways—but what would have been?

Earlier in the afternoon, Dad gave me over, his daughter, his only daughter, his dazzled blue-eyed daughter grinning with confidence over the man she had chosen. I came into the sanctuary my father’s daughter. I walked out of the sanctuary my husband’s wife.

How long had I dreamed of becoming Mrs. Anyone? A boyfriend, a boyfriend, a boyfriend: I wanted one, as long as he would stay around. And then another one, and then I wanted that boyfriend to become a fiancé and that fiancé to become my husband, so I could become Mrs. Anyone. In college, that was the title that mattered: I wanted a partner. I wanted someone I could pour my heart into. That’s what I thought you did after high school and certainly after college. My mom and dad had grown up across the street from each other; she was nineteen when they married and twenty when she delivered her first baby: me. Today it’s ill-advised to marry young, trouble from the start, they don’t know what they’re getting into, a whole life ahead, plenty of time for that, but from where I stood, I felt behind already.

Yes, I also earned a bachelor’s degree. I sought out opportunities to lead and to stretch and to achieve, to do more, earn praise, perform. Dad always said Fugmans aren’t afraid of work, Fugmans are hard workers. He instilled this drive. He was the man who had been my guide. But Brandon was the man I had chosen to walk with me out of the sanctuary, the man who would walk beside me from the altar forward. He brought me a different sort of pride. We had weighed and measured our potential, considered our compatibility, discussed the ways we would raise children, established our priorities. In him, I had found a worthy Scrabble opponent, someone I could adventure with, a man who could say “I’m sorry,” a man who would forgive me, too. For all of that and more, I had chosen him.

Now, Dad held the hand and waist of Mrs. Brandon Wells as we danced. Far in the past, a little girl crawled across his chest and stole his John Deere cap, blue eyes grinning into the face of the camera. She asked for Hooper Humperdink at bedtime again, and now we can all recite it from memory—Pete and Pat and Pasternack, I bet they come by camel back! Back there, too, she watched her mom and dad spin slowly in the living room to “If We Make It Through December,” not knowing then the depth in that melody, not knowing then the weight behind eyes connecting and smiles, what it means to make it through December, together. He taught that little girl the cast of a rod, the slow click and reel after the bobber plunked onto the surface of the water, how to bait a hook with a squirming night crawler. He coached the in-and-out of orange construction cones for hours until she mastered how to parallel park before her final driving test. Whether intentionally or accidentally, he had been preparing me.

Now, we turned slow around the dance floor, each sway a step closer to the last note in the song. Gone was the night we stared up at the cloudless sky on the hill by the old maple and waited for the meteor shower. Evenings swaying in front of a fire pit, turning front ways then back to warm our bodies as we talked about God and faith and family and regret, until the coals flashed red and black, flames dying, then walking slowly into the house to bed. There would be no more creasing wrapping paper in the dry heat of the excavator’s shop on Christmas Eve with him, no more Dad topping off and lifting my bushel basket of corn from the end of a row and spilling it with ease into the bed of the red pickup truck, Dad gunning the accelerator of the snowmobile through the fields with me clinging to his coat toasty in my snowsuit and helmet, Dad showing me the slow slide of a cue stick between thumb and index finger and then the thrust that sent the cue ball breaking against the racked triangle of billiard balls.

All of life before that day squeezed between his dusty calloused hands and mine, a slow turning, slow turning until the end notes began to play. My fingers are my father’s; long and lean, rough along the palms from a summer shoveling mulch, tough where a pen had rubbed and formed a writer’s bump. They were made for work; they were made for pouring your sweat into the thing you loved.

Even over the black tuxedo, fresh trim, and aftershave, I could breathe him in when we embraced, the scent of sweat and sun and earth and oil, “I love you, Sare,” he said.

“I love you, too, Dad.”

“It is a beautiful song,” Mom tells me later, “and we chose it for a beautiful girl.” Sometimes we’ll sigh, sometimes we’ll cry, and we’ll know why, just you and I… Maybe it was perfect. As Mickey Gilley lulled a final “…know true love ways,” Dad spun me out, then pulled me back in, my white dress billowing, the bill of his father-of-the-bride cap shadowing his smile.

•••

SARAH M. WELLS is the author of Pruning Burning Bushes and a chapbook of poems, Acquiesce. Poems and essays by Wells have appeared recently in Ascent, Brevity, The Common, The Good Men Project, New Ohio Review, Poetry East, Puerto del Sol, River Teeth, and elsewhere. Sarah’s poetry and essays have been honored with three Pushcart Prize nominations. Two essays were listed as notable essays in the Best American Essays 2013 and 2012. Her memoir-in-progress on dads, husbands, and the girl between is tentatively titled American Honey. She is the Administrative Director of the Ashland University MFA Program and Managing Editor of the Ashland Poetry Press and River Teeth. http://sarahmwells.blogspot.com.