The dream goes like this: I’m sitting at my daughter Kamryn’s high school graduation. The warm sun radiates on my back, my exposed shoulders deepening to a golden hue from the first taste of spring rays. My husband Steve and my younger daughter Jordan flank either side of me, Steve dressed in a sharp blue blazer and khakis, his blonde hair sprinkled with just a bit of grey reflecting the light of the May morning. Jordan looks exceptional in a multicolored floral sundress, ribbons of loose blonde curls cascading down her back. Steve has the digital camera focused on the football field where graduates begin the procession to the stage.
The principal rattles off the names in alphabetical order, each recipient stepping up to the podium to shake his hand and wave at their family and friends gathered in the audience to celebrate their achievement. I wait patiently; Vought is, after all, at the end of the alphabet. We pass through the Ts, the Thompsons, Trujillos, and Taylors, and fast forward to the Vs due to the lack of names ending in U at the high school. I lean forward with anticipation and nudge Steve to assure he captures Kamy as she strides across the stage. “Walker,” the principal’s voice reverberates through my mind. Where’s Vought? Did he skip her by accident? My eyes scan the line of adolescents dressed in gold and garnet silk robes, searching for a glimpse of my daughter, but all I see is a gaping space where she should be standing, an empty patch of turf absent her form.
I turn to Steve in disbelief, “Where’s Kamy?” Steve shrugs his shoulders, indifferent to my concern, stands and winds his way up the bleacher steps toward the exit, never speaking to me. Jordan jumps up and follows him, unaware of my shouting, “Wait! We have to find her! What happened? Where is she?” Then, from the corner of my eye, I see a shadowed figure moving with purpose toward me, a young woman dressed only in socks and a hospital gown. Her blonde hair is disheveled and she’s clutching a worn stuffed dog to her chest.
“Mommy, help me,” she cries out in a warm wet way, like a fawn struck by a car in the throes of death bleating for its mother.
“W-w-w-ho are yooo?” I croak, struggling to form words in my mouth filled with cotton.
“It’s me! Mommy help! Don’t let them take me!” The young woman reaches out a hand and clutches my arm. I look down, my shoulder, once golden and warm, is streaked with sticky blood oozing from a razor line carved into her wrist.
“Where’s Kamy?” I plead. I look into her eyes, deep dark blue, the color of the sea right after a hurricane, so lost and empty. I notice track marks on her arm, tiny pin prick trails mapping their way across her flesh. Her teeth are missing, save for a few rotted nubs still rooted in blackened gums. She holds out her other hand to me, the one clutching her favorite stuffed friend, only her fingers are no longer entwined in its fur matted from years of stroking, but wrapped around the trigger of a semi automatic pistol. She stands before me, a corrupted version of my child, an amalgam of every fear I harbor for her future. Dear God, please help me, awaken me from this dream. This can’t be my daughter.
Why does the brain choose to play such tricks on us? Why does it take my dreams and scramble them about, concocting some toxic brew that poisons my thoughts and destroys my hope? My mind feels the need to remind my heart of my reality: Kamryn, my oldest daughter, will never graduate from high school, have a corsage pinned on her dress by her prom date, walk down the aisle on her wedding day, or receive a scholarship to college. She never will know the successes I envisioned for her from the time I first held her in my arms. Mental illness stole her mind. My only hope for her now is that I can provide her as stable and safe existence as possible. I hold onto to these notions like light clings to a candle wick surrounded by endless night.
Hope: what an odd concept. Hope is the prospect of something more, a better life than what we endure each day: I hope it doesn’t rain today. I hope I get that promotion. I hope the mustard stain comes out of my shirt. I hope she calls me back. I hope my wish comes true. Hope is the fuel that keeps us racing towards the prospect of tomorrow. Without hope, life sinks into a quagmire of despair and misery. Without hope, we are nothing but despondent souls adrift: no purpose, no drive, no will. Hope, like faith, is that intangible concept of the soul to which we rely upon to guide us towards an optimistic outcome. It is the expectation of some ambiguous vision of ourselves and our life that exceeds the reality in which we dwell. Hope.
I had a conversation recently concerning my bleak outlook with regard to Kamryn and my life with her. “Where’s your hope, Janna? Your story is so depressing.” At first, I was offended. I am not a pessimistic person. My view of life is not apocalyptic; I don’t live in an underground shelter stocked with enough canned goods and ammunition to survive the end of days. Rather, my view is one based in truth, no matter how harsh that reality may present itself. It is true, I no longer dabble in fairy tales and mystic fantasies. I don’t believe in Santa Claus or the Easter Bunny. I don’t make wishes when I blow out the candles on my birthday cake. Mental illness shattered my rose colored glasses long ago. From the moment Kamy was diagnosed with Bipolar I and Asperger’s Syndrome, my dream factory ceased its mass production of idealistic views. Gone were the images I once fashioned out of my desire for a perfect existence, replaced by the truth of raising a special needs child, one who would forever depend upon me for her survival.
I am certain that no offense was intended when this person made their seemingly innocuous comment to me regarding my lack of hope, the absence of gleaming alabaster cities in my wonderland realm. For them, I am sure that my serious and stoic approach to my life is cold and brittle as a blossom flash frozen by a late spring frost. How can one who has never experienced such an existence possibly understand my approach to life? I do not blame others for their obtuseness; rather, I blame the lack of understanding as a societal whole with regard to mental illness and developmental disorders. How can I expect anyone to grasp my reality when they wear blinders with regard to the plight of the mentally ill and their families?
I do not live in a make believe world, nor can I assume such a role in order to quell the discomfort people feel with regard to my daughter and her conditions. Others seek to find a neat and tidy resolution to my existence. They need to feel reassured that everything is not so dire or extreme. Sadly, I cannot accommodate these needs, nor will I placate others by feeding them a diet of sugary half truths in order to help them ease their head onto their pillows each night with a clear and peaceful conscience. I believe in speaking the truth. My daughter’s diseased mind leaves me no other choice. If I deny reality, I in turn fail to address her needs and provide as meaningful of existence as I can for someone who suffers from her conditions.
There was a point, early in the onset of Kamy’s illnesses, that I clung to false notions of healing my daughter, of erasing all that plagued her body and mind, thereby returning her to the image of the perfect daughter I created in my mind. I retreated daily into that beautiful surrealistic hope of a “normal” life, refusing to see the truth, but it wouldn’t let me off so easily. Truth kicked open the door, slammed into my life, demanded my attention. It sat with me at the kitchen table while I picked through my food, stood over the bed every night when I tried to sleep. It stared at me from the mirror each morning when I awoke, and every day, as I dealt with a child continually spiraling down into darkness, it held my face with its meaty hands, rough and calloused skin scratching my cheeks wet with tears, staring deep into my soul with eyes reflecting my sorrow. It refused to let me slip away, for if I did, I risked losing Kamy forever. My only option to hold onto her stemmed from my acceptance of truth's presence.
Each day with Kamy reminds me of what we take for granted. I see the conflict within her, witness her struggle with the most mundane things: going to the dentist, ordering a different type of pizza, reading a school lesson, taking a new medication, things most of us do without pause. Who among us fight invisible demons that clog our minds with irrational thoughts, force us to perform erratic and extreme behaviors, and strip us of any sense of a regular life? I wonder what hopes Kamy holds within her, if any at all. Does she dream of great success, or does she simply desire a moment free from the confines of her ravaged mind? Does her concept of hope align with others' interpretation? What doctrine exists that defines a standard of hope? Who decides the credibility of hope? Which image of hope should we adhere: our authentic feeling or one concocted to quell the uneasiness of those who do not grasp our reality?
Those frivolous concepts of hope I once held now seem trite. I realize hope is not an idealistic vision of how I want my life to unfold, but an acceptance of my truth and the prospect that my strength and perseverance will carry me through whatever adversity I face. I often tell myself: "God does not give us anything we cannot handle." The burdens that weigh upon my soul do not defeat me; they make me stronger. I face my future with Kamy, as uncertain and frightening as it is, with the knowledge that I am a survivor.
I have hope, not of healing Kamy or retreating back to the past to a time when Kamy was happy, safe, free from turmoil, before her disorders took control of her mind, but hope that I can keep my daughter safe, hope that she does not fall so deep into her illnesses that she is irretrievable, hope that I can provide her food, shelter, and clothing, hope that when I am no longer of this world but a vaporous mist dissipating in the wind, someone else will be there to care for my little girl. I hope she finds some small pockets of happiness, if only fleeting, an escape, a sliver of light piercing the darkness. I hope.
So the dream unfolds like this: I'm standing on the gentle rolling beaches of the Gulf Coast. The white sand infiltrates the space between my toes, while fingers of the warm waters of the gulf caress my feet. The breeze lifts my hair off my shoulders for a moment, offering relief from the August sun. I scan the horizon in search of a pod of dolphins frolicking in the waves or churning of thousands of bait fish schooling together in a mass of silvered scales in an attempt to thwart a tuna assassin. A hand slips into mine; I turn and look into the eyes of my daughter, Kamryn. She smiles at me and squeezes my hand. I know if only for this moment, she found serenity. In these fleeting seconds, before the storm clouds gather within her once more, she feels peace, at one with her surroundings, and I am grateful that God provided her with this reprieve. I weave my arm through hers and together we walk down the beach in search for sea shells to gather for her collection. I hope we find one intact, although the flawed ones, those with cracks, chips, and fragments missing offer so much more. They travel great distances, tossed about in the ebb and flow of the tide, slammed against rocks, picked apart by alien creatures seeking haven within, pounded by the swirling sand, all while holding onto the hope of reaching tomorrow.
Janna Vought is the author of Evolution of Cocoons: A Mother's Journey Through Her Daughters Bipolar and Asperger's, releasing Fall 2014 from Familius.