Around us, fellow tourists bustled about the docks, climbing on and off nautical relics in search of the perfect photograph. I looked at my watch; fifteen minutes until we were to board our boat. I scanned the sidewalk, searching for my husband Steve's frame amongst the throngs of people crossing the busy California streets.
"Where's Daddy?" my youngest daughter, Jordan, inquired. I glanced at her, coat clutched against her breast to stave the brisk wind that nuzzled her golden hair.
"He had to park the car. He'll be here any second. Where's your sister?" I turned behind me and caught a glimpse of a young woman struggling to put on her coat. Her tie-dyed backpack was still strapped to her back as she tried to wedge the jacket beneath the bulk of the sack. I sighed, "Kamy, take your backpack off first." The girl, a fuchsia baseball hat with an image of the California state flag emblazoned on the front shoved down over her forehead, glanced up at me, distracted by the contraption in which she managed to ensnare herself.
"Take off the pack!" I yelled. A passerby looked at me, a scowl etched onto his face, disconcerted by my abrupt shout. Obviously, he has no children, I thought to myself, annoyed by his harsh glance. I walked over to my daughter, still caught in the battle between her coat and pack, and untwisted her from the tentacles of material wrapped around her. "You have to take this off before you put your coat on," I instructed her.
"Sorry, Mommy." She slipped the coat on and then returned the pack to its original location, snug against her back. The seams bulged with undisclosed content.
"What did you bring?" I asked her, afraid of the answer I would receive.
"My field guide, my camera, a sweatshirt, and Captain America."
"Didn't I tell you leave your things at the condo? You're going to lose something because I'm not responsible for your belongings while we're on the boat, you are."
"I'll keep track of everything." I watched her run over to the water's edge where Jordan watched a flock of gulls attempt to pilfer a fisherman's bait, her backpack flopping on her back like the sagging hump of a technicolored camel.
"Are you ready?" a voice came from behind me. Startled, I turned to look into Steve's eyes as he awaited my answer.
"Ready as I can be," I said as I followed him to the boat.
We planned this vacation for months. Since I could remember, I always wanted to go to California and watch the Gray Whales migrate from their feeding grounds in Alaska to their breeding location off the coast of Mexico. As a present for completing graduate school, Steve promised me a trip to San Diego to take such an excursion. January being the peak month of their migration, in addition to the fact that I graduated in December, we decided to take our journey at the beginning of the year. We booked a seaside condominium for our stay and Steve reserved spots for the two of us and our daughters, Kamryn and Jordan aboard The America, a yacht once raced in the America's Cup, for our whale watching voyage. Everything would be perfect, just as I imagined: my hair whipping against my cheek as I bobbed along crystalline waves, dolphins and whales frolicking about the boat, breeching the waters with their mighty forms, the majesty of nature unfolding before my eyes. Finally, I would experience something awe inspiring, spiritual, cross it off my bucket list. I did not figure into this picture perfect scenario Kamy and her illnesses.
Kamy, my oldest daughter, suffers from Bipolar I and Asperger's Syndrome, an Autism Spectrum disorder, among various other mental health maladies. Since the onset of her illnesses, our family struggles to maintain any semblance of a "normal" existence. The challenges presented by her conditions, however, make this a seemingly insurmountable task. Her various idiosyncrasies, ticks, mood swings, and outbursts make life always unexpected, precarious, and strange. She cannot tolerate change. Any variance in her daily rituals sends her into panic, an irretrievable spiral of mania and erratic behavior. Her illnesses rob her of any ability to deal with conflict and adversity in a rational manner. Our family is prisoner to Kamy's diseased mind; it controls every aspect of our existence. We ask it permission to engage in our own lives. It determines our fate.
I prepared Kamy for this trip. We researched the wildlife we could encounter on our journey, we looked at pictures of the boat on which we would sail. Jordan brimmed with excitement. Born in Colorado, neither girl ever witnessed the raw energy and natural force of the ocean. They never experienced the scent of tart brine mingling with sight of the sun dipping its head into the crystalline waters parting the horizon. It appeared that Jordan's enthusiasm rubbed off onto Kamy. Her initial anxiety faded as she considered the prospect of seeing whales and dolphins in the wild. I allowed myself permission to release some of my hyper vigilance as well; tension faded, replaced with the joy of experiencing such a wondrous event with my children and husband.
We packed our things, including various psychotropic medications needed to quell Kamy's raging mind, her bedding and stuffed animals she refused to sleep without, and her stereo containing bedtime music she's listened to since she was a baby. Most mothers of a fourteen year old do not have to spare room in their luggage for baby blankets, stuffed dogs, and Captain America toys, but for the mother of an Asperger teen, such things are all part of the routine.
We drove from our home in Colorado Springs to the California coast as Kamy would never survive a plane trip: the close proximity to others coupled with the fear of dying in the air would prove too much for her, or us, to handle. The car trip went off without a hitch. Kamy slept most of the eighteen hour journey, which was a blessing for the rest of us. We arrived in California unscathed, save for a questionable motel room the night before in Yuma, Arizona that caused Kamy much anxiety as she thought there were bugs in the bed.
As we headed toward the dock where our boat waited, we were met by a man dressed in a billowy white shirt, a black leather vest stretched across his middle-aged torso, and black pantaloons with Nike tennis shoes. His grizzled hair was captured at the nape of his neck in a disheveled ponytail, a few uncontrolled wisps floated about his head. "Are you joining us on our voyage today?"
"We are," I said as I waited for Steve to return with our boarding passes.
"Excellent! I'm Al. Please use the restroom on the boat to the right of us before boarding. We will begin letting passengers on in ten minutes." I watched him retreat, ponytail swaying, to inform fellow passengers of pre-boarding instructions. I turned to look for the girls. Jordan watched Kamy wrestle her coat into her backpack, the same coat I just helped her put on only minutes earlier.
"Girls, let's go use the bathroom."
"I don't have to go," Jordan said.
"I do!" Kamy yelled, about eight octaves louder than necessary as she bolted over to where I stood.
"Fine, Jo you can hold our coats while we go okay?" I waved to Steve and pointed in the direction of the ancient maritime vessel docked directly to my right where Pirate Al instructed us to relieve ourselves before departure. The girls followed me up the wooden plank and down into the bowels of the ship. I loaded Jordan's arms with coats and bags, "We'll be right back, okay?"
"Okay, Mommy," she said, her impish ten year old grin barely visible above the mound of material.
I steered Kamryn into the tiny restroom tucked beneath the stairs we just descended. Despite being fourteen, Kamy still requires constant help and attention, even for the simplest tasks like going to the bathroom. "You go in that stall and I'll meet you at the sink." I shut myself into the miniscule cubicle.
"My door won't lock!" she whined from next to me.
"Just hold it closed with one hand while you use the restroom."
"It won't stay shut!"
"Fine, I'm coming," I hurriedly pulled up my pants and exited the stall. I stood sentinel in front of her door while she finished.
She emerged after several minutes, as it takes her an eternity to complete any task. "I'm done."
"I see that. Let's go wash our hands." I pumped soap into her hands and turned on the faucet.
"How long should I wash?"
"Until you feel your hands are clean." Kamy is germophobic; she fears contamination from any object. I watched as she scrubbed her hands with vigor as they turned red under the stream of hot water. "That's enough." She grabbed a handful of paper towel and started heading for the door. "Kamy, turn the water off," I instructed her. I strive to teach her to pay attention to her surroundings which is difficult to do considering the clutter of random thoughts in her mind I must infiltrate in order to reach her.
I walked out to find Jo standing in the same spot I deposited her. I grabbed our coats and led them out into the gleam of the California sun. Steve waited for us on the dock. He handed each of us our boarding pass, a bright yellow laminated ticket with the picture of a sailboat on it. "Let's go!" he said. For the first time that morning, I felt the swell of excitement rise in my gut. I waited for this moment for a long time, and couldn't wait to begin my adventure.
A young man with tight coils of hair covering his head greeted us at the boat. "Welcome. Please watch your step as you board." I handed him my ticket and ushered the girls down the stairs to the deck of the vessel. The boat was beautiful. The rich golden wood held a high sheen, the ecru sails laid nestled together against the giant mast of the boat, awaiting their unfurling. Various crew members dashed about, wiping away rain that had accumulated on any surface from the rainstorm the previous night.
"Hello all," Pirate Al stood at the front of the boat and addressed the smattering of passengers gathered on the deck: a group of people from Malta chattered amongst themselves with excitement in their native tongue, a middle aged couple dressed in matching black fleece coats and ear muffs, two elderly gentleman with distinct British accents exchanged pleasantries, a man, who bore an uncanny resemblance to Captain Bligh, and his round little wife, a dollop of gray hair sitting atop her head, sipped steaming liquid from Starbuck's cups in silence. Including my family, we made a motley bunch of sailors.
Pirate Al proceeded to inform us of the safety measures aboard the ship during our four hour venture. "Don't hold onto the ropes along the side, only the posts, or you run the risk of falling in. Please don't stand by the mast as it could swing across and hit you. Take any seat you like along the interior or exterior of the boat and store your belongings behind you." I looked around, hoping for some type of cushioned seating for the girls to recline during the trip. Wooden benches and storage cabinets were the only structures resembling a seat I found. I followed Steve to a long wooden bench towards the center of the boat, the girls trailing behind me. A small knot of anxiety formed in my stomach. Maybe this wasn't such a good idea. How would Kamy fair in these conditions? I turned to look at her face, expecting to find it pinched with that familiar look of anxiety, but instead, her forehead was smooth, her lips not pursed, blue eyes calm and engaging. Perhaps I was wrong, maybe she would be okay, maybe I was overreacting based upon our other experiences with her. This time would be different; she'd be okay. My ears caught the conclusion of Pirate Al's presentation, "If you feel sick at all, please move to the center of the boat as it is the most stable location. However, we hardly ever have anyone get sick." I felt confident with this aspect of our trip. I fed everyone a dose of Dramamine before we left the condo, assuring to quell any predisposition to motion sickness any of us may have.
Since Kamy and Jordan were the only children aboard the ship on this particular day, they had the privilege of raising the flag of the ship as we left the dock. The trip would take us through San Diego Bay and out into the open waters of the Pacific in search of whales moving through the area. My tension fell away, replaced with anticipation for the day as the boat sliced through the gentle harbor waves. Steve and I pointed out various water fowl to the girls as we passed them: gulls, Brown Pelicans, a flock of Grebes. "Mommy, dolphins!" Kamy shouted. I followed her finger pointing to the water and saw the pectoral fins of five dolphins dipping just below the water's surface. My heart ached for her. I longed for her to have the ability to enjoy life, to experience the joy and wonder of the world around her, free from her diseased mind. Kamy spends most of her time in turmoil, locked in an epic battle with the demons that plague her. They control her every thought, every word whispered, every action undertaken. For the mother of someone who suffers this fate, it is almost too much to bear as I witness the continual demise of my child.
After the boat left the bay, the crew pulled baskets of snacks from the storage benches and opened up cooler lids to reveal cans of soda and juices. "Please help yourself to food and drinks," Pirate Al informed everyone.
"Who wants something?" Steve asked us.
"Me!" both girls exclaimed. He grabbed Jordan a bag of Doritos and some barbeque potato chips for Kamy. Jo sat beside me, munching cheese crusted triangles while scanning the water for any signs of whale activity. Kamy ingested her chips in a matter of two minutes and rifled through the basket in search of something else. Her illnesses rob her of any sense of discretion or self control, and we must constantly monitor her in order to reign in any potentially destructive behaviors. Her fingers snatched a granola bar from the basket. She unsheathed the treat and bit a chunk off with fervor. I smiled as the trip proceeded with ease. No complaints or worries came from my daughter.
Once in the open waters, the gentle breeze we encountered in the bay shifted to a stiff cold wind that turned the once gentle waves into giant swells. The crew of the boat maneuvered on deck with ease while us landlubbers swayed to and fro trying to maintain our balance. The boat pitched us from side to side; we clung to our wooden benches in an effort to right ourselves. "Whale eleven o'clock!" the captain of the boat yelled. I watched as passengers scrambled to the left side of the boat in awkward lurching motions. Steve grabbed Jordan's hand and guided her to the side of the boat. She clutched the wooden post as instructed while Steve held onto her coat sleeve.
"Hang onto her!" I yelled. He waved in understanding and continued to search for signs of a whale breeching the water.
"There's the spray!" Pirate Al proclaimed as he pointed to a burst of mist in the distance. He turned to Kamy and me, "Grab a seat on the side of the boat so you can see when we come up next to the group.
I grabbed Kamy's hand, sticky from clinging to her granola bar, "Stand up and I'll help you over to the side." She stood up, her sweet treat still clutched in her other hand and tried to follow me to the other side. A strong wave rocked the boat and sent her stumbling into the back of me.
"I can't! My mind won't let me!" Her face contorted in a grimace, her skin the color of wet paper.
"We won't see the whales if we stay here."
Pirate Al witnessed our exchange, sauntered over and offered Kamy his arm," Grab onto me and I'll take you over." For the next half an hour he steered Kamy from one side of the boat to the other in search of the elusive whales. I trailed behind, my face frozen from the bitter wind battering me. This was not the trip I envisioned. Yet again, I found myself caring for Kamryn rather than enjoying my time. I should have known: doing anything in our family is no small feat. Nothing is ever simple and rarely does anything ever go according to plan. As any parent with a special needs child understands, caring for someone with such debilitating conditions inhibits your ability to act on a whim, to drift whichever way the current flows. Despite my desire to engage in something without pause or worry, Kamy's conditions prohibit such a carefree approach to life.
Steve waved for us to come sit with him and Jordan at the front of the boat. "Kamy, let's go sit with Daddy and Jo." I grabbed her sleeve and pulled her upright.
"Mommy, I'm going to fall!" She plopped down and sat stone still on the bench.
"Let's scoot." I pulled on her jacket and slid her along the smooth wood. We came to a chasm of space between our bench and Steve's. I heaved her across the opening, literally tossing her to rest beside Steve.
"Why don't you take Jo and go sit on the other side where there's more room? I'll sit with Kamy for a while.
Relief swept over me. Finally, an opportunity to relax for a few minutes. I wrapped my arms around Jordan and we laughed as the boat dipped and rose in the waves. This was the feeling I longed for, to be a mother, a friend, and companion, concepts foreign to me in my relationship with Kamy. I tired of always managing her care, despite knowing that it was my responsibility as her mother. She did not ask to be ill, just as I did not ask for this to be my experience with motherhood, saddled with the care of a special needs child for the rest of my life. I often chastise myself for indulging such negativity, for it benefits no one and I always feel so selfish. My reality, however, dictates such a heightened level of responsibility that I must submit to my despair, if only for a moment, or risk succumbing to a complete breakdown.
The phrase "Get the bucket!" coming from behind me shattered my repose. My eyes followed a crew member with a roll of paper towel running to the front of the boat, another with a green bucket not far behind. I turned around and saw Kamy heaving barbeque potato chips and cinnamon raisin granola bar all over herself and the boat's deck. Steve scrubbed the front of her jacket with a wad of paper towel. My immediate reaction was to run over to her side and take care of things, as I always did, but I checked my primal response and remembered Jordan. I couldn't leave her by herself at the front of the boat; her eighty pound frame could be tossed over the edge like a limp doll with one big wave if I wasn't there to anchor her to the bench. I felt helpless and ashamed. What kind of mother abandoned her child to satisfy a need to feel regular, even for a brief moment? I cannot escape my belief that I must take care of everything, that every aspect of Kamryn's care is my responsibility; it follows me everywhere, taunting me.
Pirate Al moved Kamy to the center of the boat in hopes of easing the nausea that overtook her. I caught Steve's attention and mouthed an apology to him. He waved and gave me a weary smile. "I've got this, Stay with Jo." For the next hour and a half, as waves exploded across the bow of the ship, Kamy vomited into the green bucket while I clung to Jordan, guilt pervading my soul. I shouldn't have brought her out here. I should have known she couldn't handle it. This is the mantra of the parent of the mentally ill. We want for normalcy, we cling to the notion of a life free from the stress, anger, resentment, and sorrow associated with such an existence. We insert ourselves into the silhouette of the average person, hoping the lines are malleable enough to conform to our distorted and strange form, only to realize too late that such a lifestyle will never fit.
Mercy came when we entered San Diego Bay and the bulging water settled, allowing the boat to again slide across the surface without pause. Jordan and I moved to the back of the vessel next to Kamy and Steve where she sat with a cup of hot chocolate a crew member prepared for her. "I'm so sorry you got sick, Kam. Are you okay now?"
"I feel better. My mind told me I was going to fall and it made me sick." I looked at her, huddled inside her coat, her hood pulled over her hat, Steve's sunglasses perched on her nose. She stood out from the rest. I recalled a refrain from my days of watching Sesame Street: One of these kids is doing her own thing. My daughter: an anomaly of nature, the exception to the rule, the result of God's fallibility, my love—my life. Despite my desperate desire for regularity, I would not trade my life with her for anything. Even with all of the adversity she creates, she is mine none the less, for better or worse, my eternal gift.
I grabbed her shoulder and squeezed it, the most affection she allows me to share with her, "Do you want to get an ice cream tonight?"
She graced me with her crooked and awkward smile, "Yeah!"
Such is the existence of the mother of a mentally and developmentally ill child. We traverse rough waters in search of a better life for ourselves and our children. We dream of peace and tranquility as we search horizons darkened with the never ending storm. We persevere at all costs to ourselves in an effort to right our capsized family, the beast's mouth wet with froth and sadness awaiting to entomb them for eternity. We are the saviors, the watchmen forever looking for a safe place for our children to find shelter from the tempest raging within.