Where the Light Gets In

by Kimberly Williams-Paisley

  My dad’s toast continued. “…thinking that we’re falling into this pool of tears,” he said, acknowledging for the first time why they were all gathered. Ashley’s lips quivered, and her eyes squeezed shut for a moment. Again, I could see the truth as I watched it later: this was hard. I wanted to reach out and hug her.

  “And instead,” my dad continued, “we are surrounded by the waters of life and wine…and friendship and a rabbit saying, ‘It’s not late at all….’ Thank God for you all.” People applauded. It was a sweet speech, and vague enough to acknowledge what was happening without really dealing with it. Mom mumbled something about how she didn’t want to have to stand up and speak next. Others started teasing her, challenging her—maybe even to sing. No one expected her to, and she knew it. This was the kind of treatment she relished, honoring her, yet letting her off the hook from performing when she no longer could.

  Minutes later my sister stood in front of the group, laptop in hand—she hadn’t had time to print out her speech amid preparations for the party—and began reading from its screen.

  “I am a lot like my mom,” she said. “And I say that with swollen pride….She’s taught me how to embrace people, ideas, books, food, the beach—the things I love.” My sister went on to describe the many disorganized traits they shared, like their inability to remember to close cabinet doors or pick up dirty socks off the floor. Her audience hooted and cheered.

  “You see,” Ash continued, “at our cores, my mom and I are fascinated. We are dreamers. Creators. Builders. That means that when she is cleaning, she sees things and she can’t help but stop and read. Hours later, she’s dug through stacks and spread them out and is”—Ashley did an impression of Mom speaking with great pride—“working on a project.”

  “That is completely true!” Mom yelled.

  Next Ash listed the various ways my mom had been a great fundraiser, and after every declaration, the group in the room chorused, “Yes!”

  “So,” said Ash, taking a deep breath and slowing down, “I wanna talk to you about something. Be here with me right now. My mom is having tr—” Her voice cracked.

  I heard my mother gasp. “Oh!”

  The elephant. The truth.

  “It’s okay,” Ashley said, pointing to her. “It’s totally good.” The energy in the room shifted abruptly. Finally.

  “ ’Cause we’re happy and we’re laughing. But there’s something we need to talk about.” She took a breath. “It’s good,” she added again, as if perhaps to convince both herself and Mom. Here we begin a healthy dialogue.

  “Oh,” my mother said again quietly. There was dread in this moment, I’m sure, but also relief and resignation—for my mother, and for the people who loved her.

  Ashley continued: “My mom is having trouble finding words.”

  It was the sentence all of us had wanted to say in public on Mom’s behalf for more than a year but hadn’t yet been allowed to. Nobody moved.

  “She is slowly losing some of her brain function,” she continued. “And in many ways it’s the part of her brain that organizes things. The part of her brain that knows that she’s supposed to pick things up after herself, close the door behind her….Between us, it’s the part of both of our brains that’s always sort of wanted a day off.”

  Big cathartic laugh from everyone.

  “Yes!” Anna cheered.

  “I think both of us are often overwhelmed by the exhaustion of keeping up with logistics: how things work, numbers, maps, schedules, time. Because—do you all realize? My mom and I are wonderers. Marvelers, wishers…

  “Now, we don’t know how this sickness is going to go. How fast, how hard. It is time for my mom to play.” Big applause. Ashley was crying. Others dabbed their eyes. I couldn’t see my mother.

  “It’s time for her to feel safe enough to dream, hope, stare, build, wonder, and feel surrounded by people who will respect her no matter what she does, laugh with her no matter how ridiculous.” My sister looked directly toward Mom.

  “I want you to feel free, Mom. Leave the cabinets open. Hug people as hard as you want to. Laugh loudly. Build big. Sleep heavy, walk lightly, and start making more messes in your brand-new kitchen. I think I speak for everyone when I say, Go for it. Follow your passion. And we will be here, applauding you at every turn. Call us. Have dinner with us, go for walks with us, paint us pictures, dance with us. We are your net, your blanket, your music, and your teammates.”

  The people in the room shouted approval when my sister finished her beautiful speech. She knew how to lay the truth out in front of this supportive group waiting to follow our family’s lead. Ashley has a knack for that.

  Then she presented Mom with a special gift.

  My brother and sister and I had all received a “parachute book” from our parents when we left for college. Mom and Dad gathered up good report cards, kind letters, college recommendations, and our best papers, and pasted them in a book meant to encourage us when we needed it on our journey. To help us remember where we came from, what we’ve accomplished, and who loves us.

  “So I have contacted everybody,” my sister told my mom, “and everybody has written you something that is now in this book. And this is your parachute book. This is your parachute.”

  “Oh, Ash,” my mother said, rising. They hugged and wept together for a brief moment. And then Mom flipped the mood.

  “I wanna see it,” she said dryly, grabbing the book off the table, relishing the laugh she knew she’d get. She didn’t want to cry anymore. In that moment, Mom wanted to celebrate and feel the love surrounding her.

  —

  A few minutes later, family and friends gathered in the kitchen for cake. My mother picked up the knife and started to cut before blowing out the candles.

  “Wait! What are you doing?” Ash said.

  “Whoop!” Mom yelled.

  “I think you’re supposed to blow it out first.”

  “Wait a minute,” Mom said, tapping her head and reaching her arms out toward the group. “What am I supposed to do?”

  “Blow it out!” the friends cheered. She did, spitting a little on the cake.

  Dad helped, huffing with her. Even though everyone there knew the truth now, both my father and my sister were in heavy work mode to save Mom from social mistakes.

  My parents gripped the knife together, preparing to cut the chocolate cake the way they had at their wedding reception forty years earlier. They lifted the knife like an ax and chopped into the soft frosting. The first assault on the dessert was funny. But then Mom hacked at the cake again, threatening to butcher it. When she started for a third blow, Dad wrenched the blade from her, put a hand on her shoulder, and gently shook his head. Mom shrugged, palms up, as if to say, What’s his problem?

  “Food fight!” someone yelled. I wondered what they were all really thinking. They acted amused, loving, forgiving.

  “Gimme that thing!” Sheelah said finally, smiling. She disarmed my parents and cut them two mauled slices.

  “You guys gonna feed each other or what?” my sister said. Egged on by the group, Mom grabbed an entire piece of cake and slapped it onto Dad’s face. It covered his mouth and chin for an instant before it fell off onto the floor. Mom won shrieks of approval for her audacity. Again, her comedic timing was good, but she teetered toward inappropriate. Dad pretended to shove a little piece of cake into her mouth. But her lips were closed and more clumps dropped to the floor.

  The party was soon over. But not before Mom grabbed a fistful of chocolate and reared back, threatening to throw it at my father. Ashley jumped in front of him, holding her arms out to protect him.

  It was an instinct Ash and all of the rest of us would have again soon. Things were about to get messy.

  My mother’s question hung in the air, day after day.

  “Where’s the…?”

  It was impossible to answer because she never completed it. And the silence filled my father with dread because it was a sign of t
he worst kind of loss. They could find or replace a purse or a pair of glasses. But he knew that my mother was on the verge of not even knowing what was gone.

  Her illness had quickly become destructive, assaulting their marriage, putting their lives and the lives of others in danger. The battle in early 2007 was over driving. And the conflict was about to move to Tennessee.

  After our son Huck was born in late February, I kept my parents at bay in New York for a few weeks so I could heal and focus on the whirlwind that was new parenthood. I wasn’t allowed to go up and down stairs after having an epidural. I was sore, exhausted, and hungry all the time. I was trying to figure out the little insatiable creature who screamed for food and kept me up all night.

  Brad loved being a father. He flew our son around the house, supporting Huck’s tiny tummy on his forearm and his wobbly head and neck in the palm of his hand. They’d dart and turn, stop and hover in my face. Huck’s eyes would open wide and he would coo at me, and then his dad would swing him away somewhere else. Brad let me pass out in the evening for a few hours after the last feeding (until the wee hours), rocking Huck back and forth to sleep in a Moses basket with that same strong arm.

  My in-laws were a huge help, too. Sandy is the kind of woman who packs wet wipes, hand sanitizer, and the latest interesting-looking recipe clipped from Good Housekeeping in her purse. She can’t walk into a kitchen without washing whatever is in the sink. She shopped, cleaned, and brought me a bowl of oatmeal in bed first thing each morning. Doug ran around fixing things and helped us set up the crib and changing table. The two of them are among the most energetic and generous people I have ever met.

  My parents’ arrival disrupted this serene household as if someone had dropped a beehive in our kitchen. Mom was furious because she wanted to drive Brad’s oversized truck, as she had on previous visits. Dad argued that she wasn’t in complete control of their old red Ford Explorer when she drove at home. She confused left and right, my dad said. She drove with one foot on the gas pedal and the other on the brake. She pumped the accelerator almost continuously, making the car lurch at an unsteady speed. My father told her he was afraid she would get hurt. She countered that he was too critical and cautious, the most irritating of backseat drivers. The part about him being irritating was probably true.

  But we never talked about any of this while we were in the sunny living room of my house and the truck was parked outside on bright, springlike afternoons, as we gathered to stare at the new baby. Huck was our great distraction. Brad and I told my parents the story of the birth of their grandson over and over again. It was a kind of salve for Mom’s wounded pride, and usually snapped her out of most bad moods.

  —

  Despite her disease, or perhaps because of it, she was a surprisingly charming and magical Nana (the nickname Huck would later invent), and I made sure to tell her so often.

  “He loves you, see?” I said as Huck stared at her. He seemed fascinated as we lay on the floor with him and sang “You Are My Sunshine.” My mother knew many of the words, and tapped the floor and hummed when she didn’t. Huck loved the ruckus. He kicked and farted with glee.

  Thank you, I told him in my mind. For being delighted by us. And for having problems we can fix, like spit-up or a poopy diaper.

  My mother held Huck awkwardly, but I never corrected her. And she never questioned or judged my maternal instincts. I was relieved not to suffer any of her criticism. She loved watching me become a mother, and the unsolicited advice she used to provide, the judgments about my choices, seemed to be gone. Her scrutiny of me had disappeared, replaced by an endearing show of humility and happiness.

  I’ve often wondered what kind of grandmother she would have been without dementia. Maybe more reserved, more subdued. But as she was, she lay on the floor and cooed to my son much longer than I could before I ran out of energy. Her newfound playfulness evoked some of his first smiles. Her illness gave her a surprising gift: an intense joy that probably came from decreasing self-awareness.

  —

  But away from those serene scenes with me, Mom frequently shook with intense rage. My father downplayed to me his growing concerns about her driving, probably trying to minimize distractions from my role as new mom. I heard bits of the continuing story as I passed off Huck to him in the early dawn light of my kitchen while Mom slept.

  Finally, exhausted, Dad gave up arguing about the car, chose marital peace over safety, and said she could do what she wanted. Curiously, after having won, Mom let him drive her everywhere for the rest of their trip.

  But back home after the visit, she picked up the fight again. She often drove herself to Costco, a few miles from their house, and spent hours wandering up and down the giant aisles, stocking up on more than they needed—enough laundry soap, vitamin C, and toothpaste to last a year. When my father or anyone else offered to take her to the megastore and wait outside, she refused. I’m sure that driving there herself, pushing a large cart like other customers, and pausing to choose makeup or something Dad wouldn’t know how to buy gave her a sense of competence.

  But one day, inevitably, Mom confused the accelerator with the brake. The SUV barreled past a row of parked cars in the Costco lot and vaulted up the side of a two-foot-high retaining wall, coming to rest with its front wheels hanging above a hill on the other side. Remarkably, no one was hurt. The only damage was to the right rear fender of another vehicle. Its owner was kind and tried to comfort her. A tow truck hauled the car off the wall.

  “I don’t know what happened,” my mom cried to the woman and a police officer at the scene. “I’ve never done anything like that in my life.” That was true. The officer and the woman most likely wrote off any of her confusion after the accident as an emotional reaction to the wild ride. She walked away without consequence.

  A few days later, Ashley arrived from California for a visit. She had no idea what had transpired when she offered to take Mom shopping—at Costco. My mother showed no fear of returning to the scene. Within seconds, as they pushed a cart past giant TV screens, a salesperson stopped them.

  “How are you feeling, Mrs. Williams?” he asked.

  How does he know Mom’s name? my sister wondered.

  “Oh, I’m fine,” my mom mumbled, rolling by him.

  “What’s he talking about, Mom?” Ash said.

  “Nothing,” Mom said with a dismissive wave. “Stupid.” It’s possible she didn’t remember all the details of what had happened. Even more likely, she didn’t want anyone to know. Minutes later, another employee, looking concerned, asked the same question.

  “Just silly,” Mom said when Ash pressed.

  When they got home, Ashley managed to corner Dad privately and force him to tell her the whole story. It was only because of her persistence that Jay and I heard about the incident. Mom had begged Dad not to tell us. We were very concerned that he’d agreed. It appeared as if even he believed the fiction that they were leading a normal life, or maybe her anger had just forced him to surrender and take her side. It felt premature and disrespectful to hide the keys from her, he told us later. Mom was still aware enough to see through any ruse. She was vulnerable and innocent, and he didn’t want to hurt her.

  We voiced our concerns to our parents, but Mom accused my siblings and me of “bashing” her about driving. She stopped talking to my father for a while, and then demanded that Dad stop talking to us about mistakes she made behind the wheel. So he stopped.

  —

  Later that summer, Mom and Dad took a trip to New England with their friends Larry and Betsy. One day on the island of Nantucket, the group decided to rent bikes and follow the Polpis bike path, which ran a few miles east of the harbor. They found a shop that also offered motorbikes.

  Dad’s first hurdle was trying to convince Mom to go for the simple bike rather than motorized wheels. As a college student, she’d raced around the north of France with a boyfriend on a howling Harley motorcycle. Ever since, she’d yearned for the thrill of
speeding in the open air. What could go wrong with a little putt-putt scooter? she wondered. The shop’s staff told Mom she’d have to pass a brief driving test before she could operate the motorized bike, and she quickly dropped the idea.

  They settled on ten-speeds, each with two brakes on the handlebars, one for the back wheel, the other for the front. They wore safety helmets. It was easy to put aside concerns about Mom’s driving. You never forget how to ride a bike, Dad thought.

  They set off sometime after lunch. My dad followed her as they left the town behind to make sure she was okay. Twenty minutes later, they started a long downhill, having pedaled hard to reach the top. My father passed her, probably saying something like “Lookin’ good.” He was relieved that she seemed to be in control. He shifted gears on the bike and felt the salt air in his face as he coasted. The sun was brilliant and the sky clear. When he got to the bottom, he realized my mother wasn’t behind him. Then he heard her cry.

  “Gurn! Gurn!”

  He turned. Trees at the top of the hill blocked her from his sight.

  “I’m coming, Scout!” he yelled. There were no other bikers around. Larry and Betsy were a few hundred yards behind him. Adrenaline propelled him back up the path.

  He saw Mom on the ground, scared and sobbing.

  “Scout,” he said. “Oh, Scout.” Blood covered her mouth, and the back of her hand was gashed. Dad tore off his T-shirt and wrapped the wound. She was missing a front tooth. He asked her if she felt pain anywhere else. “I don’t know,” she said. When their friends caught up, Betsy, a trained nurse, jumped off her bike and cradled Mom like a child.

  “It was so scary,” Mom cried over and over.

  No one knows for sure what happened. But it seems likely that when she started down the hill, trying to keep up with Dad, she panicked at how fast she was moving. She probably yanked hard on the bike’s front brake. It’s the fastest way to stop. But the sudden deceleration can toss the rider headfirst over the handlebars. The helmet may have saved her life.