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.

The Break-Up

nest hand002 — By Beth Hannon Fuller www.studiofuller.com

By Dorothy O’Donnell

It wasn’t as if I hadn’t been dumped before. Or ended my share of relationships that had disaster written all over them. But this particular break-up hit me harder than most, even though, technically, I wasn’t the one being dumped.

It happened at my eight-year-old’s school on her first day of second grade, the hottest day of the summer. Seeking shade while I waited for the screech of the bell to release her, I headed for the courtyard with the big oak—the one the kids called The Barney Tree—by her classroom. The mother of Sadie’s closest friend was already sitting on the wide, tile-studded concrete planter that surrounded Barney. I smiled and sat down beside her.

I liked Janet. I considered her my friend. We made small talk—about the weather, our husbands’ annoying habits—as we had so many times before while we waited for our girls.

That summer, they’d spent hours bouncing on the trampoline in my backyard, dissolving in peals of laughter as they played a game they called “Butt War.” They dressed up like Hannah Montana and danced around my living room belting out “The Best of Both Worlds.” They went to day camp together and called each other B.F.F.

Just before the bell rang, Janet turned to me and sighed. “I need to let you know what’s been going on,” she said.

My stomach clenched. I was pretty sure I knew what was coming.

She told me that during their last playdate, Sadie kept punching and pinching her daughter, Amy. It wasn’t the first time this kind of thing had happened, Janet confided. Sadie had even kicked her in a fit of anger.

“I’ve never seen anything like it,” she said, her eyes wide.

I stared at the tawny oak leaves scattered on the asphalt and pushed them around with my foot.

Sadie was diagnosed with early-onset bipolar disorder when she was five. Frequent mood swings—including extreme irritability that can be triggered by something as innocent as a playmate saying “hi” to someone else—are symptoms of the illness.

Usually, she saves her explosions for home. It’s where she feels safe to lose control. Maybe all the time she’d spent with Janet and Amy made her comfortable enough to reveal her ugly side to them, too.

When the girls first became friends, I expected each playdate to be their last. Although she’d never physically attacked another child before, Sadie’s explosions had pushed most of her few other companions away. But as the months rolled by and their get togethers continued, I made myself believe everything was okay. I was desperate for my daughter to hold on to her one good friend. And Janet never mentioned any problems.

I’d told her about Sadie’s condition, although I’m not sure if she understood it. And I get that. It’s easy to see my little girl’s outbursts of rage as bad behavior. Or the product of poor parenting.

I wouldn’t want Sadie to play with someone who hurt her, either. But that knowledge didn’t soften the blow when, as the classrooms’ turquoise doors swung open and chattering kids flooded the courtyard, Janet said she thought our girls should “take a break.” It wasn’t hard to read between the lines: I knew their friendship was over. And so was ours.

I broke the news to Sadie as gently as possible on the drive home. She kicked the back of my seat and pummeled it with her fists. She shrieked that she hated Amy. But by the time I pulled into the driveway, she was sobbing as the realization of what her behavior had cost her began to sink in. Inside the house, she grabbed paper and crayons from a kitchen drawer to make a card.

“I’m so, so, so sorry!” she scrawled beside a giant purple heart with a sad face and a jagged line severing it in half.

I squeezed her tight and told her I was proud of her for taking responsibility for her actions. But I warned that the card wouldn’t magically fix everything. She said she wanted to give it to Amy anyway.

I wish I could say that I handled the situation with as much grace. I didn’t. I’d expected my child to be destroyed by the break-up. I wasn’t prepared for how devastated it left me. I missed talking to Janet, who, like me, was an older mom with one child. I missed our occasional outings to the beach, barbeques, and dinners at the girls’ favorite pizza parlor.

Like a scorned lover, I obsessed over every conversation I’d had with my former friend; I tried to pinpoint the exact moment our relationship had soured. Was it the afternoon when she’d called me a soft touch when it came to discipline? Or the evening I showed up at her house to pick up Sadie and she’d hesitated a second too long before answering when I asked how the playdate had gone?

“Great!” she’d said with a strained smile, peering over my head into the dusk. “Everything went just great!”

The more I kept hitting the rewind button on our relationship, the more bitter I became. I went out of my way to avoid Janet at school. One day at pick-up time, I saw her walking toward me as I sat in the car line waiting for Sadie. She was holding hands with Amy and another girl I recognized—a docile creature, who, I was sure, never lost her temper or hit anyone. As I slouched in my car and watched the happy trio cross the parking lot, a wave of envy and anger crashed over me. How could they move on so easily with their lives after leaving such a gaping hole in ours?

I hit rock bottom a few weeks later. I was walking my dog in our neighborhood when a blue minivan chugged by. The driver lightly beeped the horn to say hello. I recognized docile girl’s mother behind the wheel. I gripped Max’s leash tighter, wondering if this woman lingered in Janet’s living room to chat after playdates the way I once had.

From the back seat, Sadie’s ex-bestie and her new sidekick turned to grin and wave at me. I feebly wagged a few fingers in return. What I really wanted to do was flip them off. Because I so wished that my daughter was crammed in the back of that van with them. I ached for her to have a normal childhood, for me to be a normal mom. As the van disappeared around a bend in the road, it felt as if the life we were supposed to have was vanishing with it.

I yanked Max’s leash and turned for home, ashamed of the jealousy and self-pity churning inside me. Janet had every right to protect her child. That’s what mothers are supposed to do. It wasn’t her fault that Sadie is the way she is. It wasn’t my fault, either. A gray river of fog tumbled through the valley below the street where I was walking. I imagined it washing away the anger and pain I’d been lugging around since the break-up.

That night, I clicked on the website of a local support group for parents of kids with special needs. I’d thought many times about going to one of the group’s monthly coffees but always found an excuse not to when the day came around.

The following Friday, I printed out directions to that morning’s coffee and drove to the house. With a trembling hand, I pressed the doorbell. A woman with long black hair and a kind face opened the door and welcomed me. She led me into her living room where a dozen or so other women sat on a cream sofa and dining chairs, nibbling blueberry scones and talking. No one looked shocked when, after introducing myself, I told the story about Sadie hurting her playmate. They just nodded or flashed sympathetic smiles.

The next time I saw Janet heading across the school courtyard in my direction, I didn’t look away. I said, “Hi,” and asked how it was going as we passed each other. It still stung to know that she and Amy weren’t part of our lives anymore. But I was finally ready to start moving on with mine.

•••

DOROTHY O’DONNELL is a freelance writer who lives in the San Francisco Bay Area with her husband and daughter. Her stories and essays have been featured on greatschools.org, brainchildmag.com, mothering.com and NPR. She is currently working on a memoir about raising a child with early-onset bipolar disorder. You can find more of her writing at dorothyodonnell.com.

No Cars on the Road

boy on floor — By Gina Kelly www.ginakelly.com

By Nicole Matos

My three-year old son and I are on the floor. Bless his occupational therapist, but her daily home-based tasks are killing us. I place blocks in a line and run a car over this road. “No!” Alex charges between me and the blocks and tries to rip the cars from my hands. “No! You don’t! I tell you!”

“Well, you can play your way”—I point to his pile of blocks—“But I will play this way. We can play differently.”

You and I are different, we are different people. His therapist (the “feelings” one, not Speech or OT) pushes me to say this, after I have explained the hairdryer battles, the sign-he-saw-that-I-didn’t-see, his new insistence that I have a penis, although he was fine before with me and my vagina for babies to be born out of. Babies like Alex? Did it hurt? Did we do it in a hospital?

But now his fears and his tantrums have settled around the truth that he and I do not always match. Over and over he tells me that I have a penis—I TOLD YOU, I TOLD YOU, as if his insisting on it will make it so. When I try, “We are different,” he goes crazy: “No! Not different! Not different! No! Please!” I reassure him that I love him, nothing is changing, we are already different, we are, after all—a bizarre sort of Platonic evidence I pull out of my ass—not always in the same place at the same time.

But the cars: “Alex will accept adult variations in his play.” He seems to know that this is an object lesson, a battle of reality paradigms, a showdown. “No! No! I’m so mad at you! I want to poke you in the eye [and does], I want to hit you [and does]!” And I hate my whole life. I hate every imaginary parent who has ever played cars with their imaginary child. I hate all my other imaginary children: those twenty eggs I saw on the ultrasound that month he was conceived. Nineteen other possible Alexes, but none of them here to help us, now.

Why? Why? Why no cars allowed on the road? And yet, the next day—“I want to play cars, Mommy”—he lines up the blocks, runs the car over the top, and eyes me carefully. “This car needs to wait his turn. Uh-oh! We can solve the problem! Look, relax and solve the problem!” Trying again. Showing me. So, what can we do to get second-day Alex on the first day? How do we beat down first-day Alex so second-day Alex can live, live, live?

If I had another child in my house, a child that picked up the car and ran it on the road, easily, heedless, I would backhand that child. I would sink my teeth into his shoulder and suck.

I tell my husband that, in my secret evil angry head, I call the therapy programs that are saving our lives—saving our son, by line items and inches—the Ghetto Where What You Wished Wouldn’t Happen Happened. That when I see the words “Special Needs” (especially if they are surrounded by rainbows or smiley faces), I think they should be renamed “Outrageous Needs.” That is how I think of Alex’s needs, on those days when he is just a bleat of screeching irrational anxiety—“Give me my blanket! No blanket! Take off my sock! No sock! [Hits me.] Mommy, I’m sorry! Mommy don’t go!” Outrageous needs!

And, I tell my husband, I am scared I have a worn spot in my mothering now that just won’t go away—a worn out, sagging, trampoline spot that other parents have time to patch up because it isn’t so often used, so outrageously. And it is holding—it has to hold, I have to make it hold. But what if it breaks? What if my love somehow leaks out?

The next day there is third-day Alex—not struggling, not overcompensating for having struggled, but just himself, total, complete. We have a great time at the park. We ride the swings and the slide and play pretend in the way that feels safest to him, in exaggerated fake voices, with the reminding anchor, “This is just pretend” sprinkled throughout. An old woman gives him a huge lollipop, spontaneously, and I let him take it, not thinking how close it is to Speech.

I spend the ride setting it up: “We will need to say goodbye to the lollipop, for Speech, but I promise it will be in the car when you get back.” And he does it voluntarily, giving it up, even waving the lollipop bye bye. But then he can’t hold it together. He lies down on the sidewalk, telling me with his body, I am overcome. He doesn’t want me to hold him, but I say I love him, touch his hand, and we count to ten and to ten again, calming.

After Speech, his therapist says, “He actually did great today—he used a big word, ‘promised’!” We look at each other, my son and I, co-conspirators.

Back at the car, the lollipop is waiting, and I grind it in for next time, the prophecy I’m determined, through all my human resentment and selfishness, to make true. “If Mommy promises, I will only promise when it is true. I will only promise if I am certain.”

And he says, sincerely, “Thank you mommy Alex promise.”

•••

NICOLE MATOS is a Chicago-based writer, professor, roller derby girl, and special needs mom. Her work has appeared in such publications as Salon, The Classical, The Rumpus, theNewerYork, The Atticus Review, Monkeybicycle, THE2NDHAND txt, berfrois, Chicago Literati, and many others. Follow her on Twitter at @nicole_matos2.