The road to joy

We are congregated in the living room of our souped-up, double-wide manufactured home. It sits on the edge of our family farm on the outskirts of town. We are watching, with minimal interest, our usual evening show, Andy Griffith. Cartoons coming from the other room provide our usual background noise. The whistling theme song blares loud enough to put us off, accommodating my dad, Bruce’s, hard of hearing.

Baley’s steps heave across the floor, making distinct thuds for such a tiny person. At first glance she appears short and breakable-looking, but her steps are tense and strong. She is pigeon-toed but she walks with purpose. Her fair, unblemished skin looks as though it had maintained itself since birth. She is so small that you can see the outline of her spine protruding from her back. You can run your hand down it and feel the notch of every vertebrae like running your hand across the black keys of a piano. She tops out at eighty-five pounds, only if we can get her there. She eats solely through a feeding tube that connects to a “button” on her stomach. The button-sized piece of plastic is barely visible, sticking out of her midsection through her t-shirt.
Her t-shirts are hand-me-down from her younger, but much larger by comparison sisters. Her around-the-house outfit is complete with an adult diaper that completely swallows her tiny legs and stomach.

She has hazel eyes and dark brown hair — just like me. I often look at her and try to see myself. I can’t help but wonder if we would look more alike had she been born normal. Lauren and I only share similar noses. Lauren is tall, blonde, moderately athletic, easily outspoken, and type A. I can’t relate, so I look to Baley for the what-ifs. If there’s anyone who can give you a case of the what-ifs, it’s Baley.

A near attachment of her dainty hand is a webbed green ball, a toy made for infants, about the size of a softball. She curls her fingers tightly around the openings, clinging to it for dear life. She will only release it for one other toy, Buzz Lightyear, for reasons we don’t worry about trying to understand. She is constantly restless, pacing from her room to the living room and back. She paces. She stops. She sits for a moment. She paces again.

She reacts sporadically to our laughter or general loud-ness. We talk to her like you would a baby, knowing that she may or may not acknowledge our existence. We often talk to one another about her and she cuts her eyes and smiles at us for half a second. It’s as if for that moment only, she may know what we are saying. This is the ideal Baley. This is our safe place — our long-awaited promise land after a treacherous journey through the wilderness.

Between the three of us there were five faces. Baley’s was always the same, but Lauren and I each had two. One face for Mom’s house and one face for Dad’s. Lauren is exactly thirteen months and six days older than me. Growing up, she was my walking and talking how-to-do-life manual. I was her shadow by my own will. If she jumped, I jumped. If she joined band and played the flute, by golly, I joined band and played the flute. She was the filter I put every situation through, with only one exception. Lauren wanted so badly to be the apple of our dad’s eye. I tried it a few times, but quickly realized neither she nor I would ever beat out the man’s love for Bud Light and freedom. She persisted.

His extended family has a deer camp. It’s a few miles away from my granny’s house. We always went there on his weekends for the sake of his freedom. His explanation was that it allowed us to see Granny and Grandpa. He wasn’t wrong, but his motives simply weren’t that pure. There was a house my dad rented that was only twenty or thirty minutes from where we lived in Malvern with our mom. Rather than going there on his weekends, he insisted on taking us two and a half hours away to El Dorado, Arkansas. God forbid he be solely responsible for our wellbeing for two whole days.

Lauren liked the deer camp when we were younger. She was a small, agile girl that could easily play along with whatever games my older cousins came up with. She liked to hunt and shoot guns — she fit in for the most part. I was not agile, small, or good at any games. I didn’t hunt, nor did I want to shoot a gun. I couldn’t find interest in football games or any other activities that went on there. Lauren may not have genuinely liked any of those things, but she was good at playing the part for them, so she got along well. I learned quickly to stay in the house.

At the house there was TLC or HGTV on the television, the company of my proper and poised Granny, and Baley, who needed to be taken care of. It wasn’t where I wanted to be, but it was the best bet — indoors, safe, not being made fun of by my older cousins. During the day when Lauren wasn’t there no one wanted to change Baley’s diapers, so I did it.

At home, my parents would lay her on the bed to change her like you would a baby. I was smaller than her or of equal size (depending on the year), so I had to figure out a different way. I would take her to the bathroom and pull down her pants and pull-up, sit her on the toilet, discard the pull-up, clean her, replace the pull-up, and put her pants back on. Simple and easy.

For everyone else, there was always an excuse. My actual dad thought it was actually weird to change his disabled daughters’ diaper. My granny was too old. My twin-aunts either didn’t want to or they had to be convinced. My sister did when she was there, but again, she was usually with Dad at deer camp trying to win him over, hoping it would make him change. I don’t blame her for trying, he actually could be a decent guy when he didn’t drink.

At home we had a routine. We weren’t expected to take care of Baley, and we certainly weren’t trying to convince a parent to do us right. At home, Mom and Bruce took care of everything. We played, did our homework, a few chores, and went to bed by 8 pm. We could relax our minds and act our age, which often meant acting up.

Lauren was the terrorizing older sister that beat me with my own baby doll and blamed me for her wrong doings. I was the smart-mouthed back talker to my parents, and I tested Lauren’s authoritative personality as often as possible. At Dad’s, we had to be on the same team. We understood that bad things might happen, and we would have to lean on each other. We had to play pretend in the worst possible way. It was us against severe alcoholism and irresponsibility.

As we got older, Lauren and I started to pick up on the level of manipulation my dad and his sisters were trying to achieve. Our aunts would tell us bad things about our mom, either made up or dug up from her past.

“You know your mom’s a pill popper,” they said, “and she drank, too, when her and your dad were in college.”

We didn’t care, true or not. My aunts failed to realize that Lauren and I had two ears, two eyes, and a brain to pick up on all the little things they did to try and wreak havoc on our lives. We could clearly see the difference between how we lived at home versus there. With our young and observant minds, we knew that home was better.

Our aunts disliked me more than Lauren. I was severely unimpressionable on their attempts to sway me and blatantly disinterested in trying to please them. Lauren was, at the very least, polite. I didn’t just roll with the punches. I had strong opinions on what was right and wrong and knew that their actions were wrong. Lauren knew it too, she just cared more about keeping the peace. I slightly enjoyed making them mad. I couldn’t control a lot about my situation, but I could definitely control how much they enjoyed their time with me.

Our dad always drove a bright red, four-door, Chevy Silverado. One day, we met up with him like normal. We got all settled in the truck and Mom and Bruce had already driven away. As soon as the coast was clear, he showed us his new “invention.”

“Girls, I’ve got something to show you,” he said. “Check out what I’ve been working on.”
I don’t remember all its features, but the small contraption was supposed to make the truck run more efficiently… or something. He bragged about wanting to patent it and explained to us what a patent is. It was some kind of a twisted, fatherly teaching moment. He beamed with forced pride in himself. I honestly thought it was lame and boring, so I didn’t tell people about it. Years later, I had a random epiphany while at school that his fantastic invention was indeed, a breathalyzer. He would even have us breathe in it, “for fun.”

As time went on, our dad made friends and we spent time with them and their kids. They lived close by my dad’s actual house that we never seemed to go to on his weekends. His friends and all their family would go to the lake together in the summer and Dad would bring us there. If we spent time at his actual house, and not with Granny, I didn’t have the option to stay at home.
At the lake, the later it got the more drunk everyone became. The music was loud and the people were in and out of laughter and drunken singing. Never once did I feel completely comfortable or safe around them like I did with Granny. I was always on guard, and always ready to fake a smile and appease a grown adult with what they wanted to hear. Yes ma’am. No ma’am. Yes sir. No sir. Fake laugh. Smile. Nod. His drunk behavior and our discomfort wasn’t new, but the drive from the lake to his house was a lot longer, curvier, and far less rural than the ride from the deer camp to Granny’s house, and we couldn’t risk doing nothing.

Baley wasn’t there, thank God. Lauren and I were beginning to worry about riding home with our dad that night. His breath reeked of beer, he wasn’t that stable on his feet, and he was acting completely stupid. I remember vividly seeing him stumble when yelling out the lyrics to some Toby Keith song, most likely “I Love This Bar.”

We had a Go Phone at the time that barely worked. It died so fast that it was mostly useless when you took it off the charger. We couldn’t call our mom with it plugged in to the camper, one of the other kids might know that we are calling for help. We finally got enough charge in it after what seemed like an eternity. We walked over to the communal restroom steps across the road.
Our hands were shaky and sweaty, and we tried repeatedly to call our mom. It took so many tries, there was barely any service and so little room for error on such a dumb phone. With each attempt we would get more and more scared that the phone wouldn’t work. We contemplated just grabbing someone’s phone and calling the cops, but we desperately wanted to talk to mom first.
We finally got her on the phone.

“It’s okay, baby. Calm down. I’m on my way.”

She instructed us to go tell one of the women that my mom thought would try to help us. Maybe they would get Dad to drink some water and settle down. I went to find the woman and Lauren waited up the hill.

“Uh, I think Dad is pretty drunk. Do you think he should drive us home?”

“What?” She laughed me off. “Your dad is not drunk, you’re so silly.”

She was drunk, too.

I knew Mom said to tell a woman, someone motherly in the very least. So I went and told my dad’s friend’s wife. In my head, I imagined that she would help us or at least offer advice. She was normally sensible, but she was drunk as well.

“Hey, uh-” I stuttered, “Dad is drunk, and I think our mom is coming to get us, I don’t think it’s safe for him to drive home.”

She immediately stood up, gripped my arm, and squeezed it so tight that it left a mark.

“Your dad is not drunk.” She whispered at me, but it resembled a yell more than a whisper. She pulled me up the hill to her camper by my arm where we had previously charged the phone.

I have still images in my memory of her yelling in my face, screaming at me. But, above all, I remember how she made me feel. I could smell the alcohol on her breath and see the rage in her eyes. I couldn’t tell you what happened between then and my mom getting there. I think her husband joined and my dad figured out what we did. I know this was the scariest part of it all, three plus drunk adults yelling at me, but I have no recollection of what exactly went down.

Mom brought my Papa, her dad, because she was that worried about how they would act when she got there. It took her an eternity to get there. She drove all the way out to his house first, and then made the drive to the lake. Once she got there, I wearily climbed in her Suburban and talked to my Papa.

At this point I hadn’t cried or processed what happened, but I felt so weary, like I had just been emotionally beaten. I peeked outside at my mom yelling at my dad. I was so proud of her. Sitting there, safe in my mom’s car, my guard went down. I finally comprehended what just happened. I felt a rush in my stomach. I opened the door and threw up on the ground.

Our relationship from that point forward was never the same. Dad made us promises he failed to keep. He was always more concerned about himself than he was with us. He tried to guilt trip us with tears or shopping sprees. Eventually he got one too many DUI’s in Arkansas and decided to relocate to Florida. We spent three weeks with him in Florida one year and two weeks again the next year. We spent almost every night of those weeks in a bar with him, getting to know the bartenders and kitchen staff. I spent my eleventh or twelfth birthday crying in a bar because Dad decided we weren’t doing anything for it. This was how it was all the time.

Mom and Bruce. The name Bruce isn’t a name to me, it’s a word that symbolizes Dad in it’s best light. People often ask, “Why do you call your dad ‘Bruce?’” We always asked the same question. I was three years old when they married, so I could have easily called him Dad. We begged to, but Bruce asked us not to because he wanted us to be respectful of our dad.
Bruce was, and still is, the dad we came home crying to when our real dad wasn’t there for us. He taught us right from wrong, fixed our hair when we were little, and our cars when we got older. He dropped everything for us, no matter what. The craziest part is that he didn’t even have to.

Bruce’s decision always struck me as odd growing up. He was willing to marry my mom who had a three-year-old daughter, a four-year-old daughter, and a seven-year-old autistic, epileptic, severely disabled daughter after he literally just finished raising two boys. There aren’t many who would take that on, but Bruce did. Dad didn’t even want to change a diaper.

I can’t tell you how many hero-themed essays I wrote about my mom in grade school. From when I was born to age three, she had all of us with essentially no help. My dad found every excuse to be away from home since Mom didn’t want him to drink there. Bruce offered to help because he was the pastor of the church we attended. That’s what pastors do – they help. He picked us up from daycare and watched us when Mom had to work. Bruce grew to love us, and my mom grew to love the man who helped.

Mom was our defender, our safe place, our example of what is right. She comforted us over and over again, each time our dad broke our hearts. She was the source of our strength in every scary moment we faced.

The simplified story sounds awful — growing up with an alcoholic dad and a disabled sister. But the big picture is spectacular. In the middle of the awful weekends there were twelve days of stability and comfort. In the middle of the burden of caring for Baley there is joy in what she has taught me. My dad gave us Bruce. Baley gave us compassion. Mom got us through it. Lauren did it with me.

Somewhere in the middle of the trauma I always had peace. I found it in knowing that one day, I could walk away from it all. I found it in the deep bond that my sisters and I gained. I found it in knowing that there was only time standing between the life I had to live and the life I wanted. I numbed myself to the actions around me just enough to make them think that I was okay with it all. But the day came that I had the power. I could walk away, never look back, and there was nothing they could do about it. No more manipulation. No more intoxication. I could leave it all behind.

So, I did.