As I lay on the cot in the dark room, the quiet drone of the IV pump and the hissing sounds of oxygen played in my subconscious like an old familiar song.
Hours before, I was dressed in a paper suit and face mask preparing to go to the operating room. I was covered from head to toe as I accompanied my daughter, Johanna into the operating room for her ninety-first surgery. This was an all-too-familiar experience, one that parents pray they never need, that has become a frequent part of my life over the past eighteen years.
I did what I always do; I helped her onto the gurney as we joked with the nurses and anesthesiologists in the bright, cold operating room. I understand the lights and the sterile environment, but I keep forgetting to ask why the operating room is so very cold. The experience and the temperature chill me to the bone. As the doctors and nurses connect my daughter up to monitors and lines, I joke with Johanna about whether or not we’ll change up our routine and sing a different song as she drifts off to sleep. Her piercing eyes and the cutting motion of her right hand convey her answer clearly. I will sing the same lullaby that I have sung since she was a baby, hoping this surgery would be the last and we could leave this odd childhood routine behind. The song, the sign of the cross and kiss on her forehead have become as much a part of our life as most mothers and daughters share a favorite bedtime story. It provides us with a sense of security and confidence that God is ultimately in control. He is the Divine Physician who holds my daughter’s life in His Hands.
Despite the comfort, this ritual will never be routine. It doesn’t get easier, in fact in some ways it gets harder to hope and to believe that this suffering will ever end.
This week was an uncomplicated surgery, from a neurosurgeon’s perspective, one that has been described as fixing the plumbing in my daughter’s brain. I frequently remind her that she has a million dollar head, complete with intricate catheters and sophisticated hardware, which control the flow of cerebral spinal fluid (CSF). Most people don’t think about CSF, or wonder if an impending storm or an airplane flight, will negatively affect the pressure or cause bleeding in the brain. But we do.
All these experiences: operating rooms, IV’s, cerebral shunt systems and bleeding brains, have become a familiar part of our lives since Johanna was born with CCM3, a rare neurological disease. The experiences of this day and those of years gone by played mind like a re-run as I tried to sleep.
As I laid my head on the pillow, I looked out at the Manhattan sky, the stars outshined by the glare of the city lights. Just then a word pierced through the blurred lights like a message from heaven written in the skyline. The combination of exhaustion and near-sightedness caused me to squint to confirm that I was reading and interpreting this sign correctly. Sure enough, the word, Life in illuminated white block letters caught my attention as I was going to sleep. In a moment of sleepy confusion, I wondered if I was the only one in Manhattan who witnessed this illumination. No matter, I decided, I knew what the word meant to me and what God was whispering to my heart. I knew it served as a sign of thanks for saying yes to life, no matter how hard or inconvenient. Life is a gift to be treasured.
Perspectives on Life
As we fight for my daughter’s life and the dignity she deserves, I thought too of the story of Brittney Maynard, the 29 year old young woman who is planning to end her own life to control the suffering that she and her family would have to endure in the face of a terminal diagnosis. Her story and video have gone viral as she appeals for others to support assisted suicide, that which she and advocates refer to as the right to die with dignity.
Profound life and ethics are headlining news stories in print, online and in social media. In contrast to Brittney’s decision and call for assisted suicide as compassionate care, another woman diagnosed with terminal cancer shares her message of hope and her desire to live even in the face of profound suffering.
In a similar debate, two sets of parents make very different decisions for the lives of their unborn children. One couple embraced the devastating diagnosis of their unborn child, Shane, and celebrated his short life taking every opportunity to cherish the precious time they had with him. They received this little life as a gift and honored Shane’s brief life with dignity.
The other couple, in misguided compassion, chose to end their child’s life rather than face life with a child with disabilities.
In the U.S., our longer than 40-year battle of ideologies and philosophies has blurred the lines of religion, politics and medical ethics as conflicting definitions of personhood determine a life or death sentence for the babies in the womb who are caught in the fray.
In promoting assisted suicide and abortion, our society uses softer words like, compassion and choice to cover the harsh realities of death to human life. Whereas the abortion debate began with the question of when human life begins, scientific advances confirm the existence of human life at conception. The real battle that ensues is the battle for the dignity of personhood; when is a human life valued as a person. These soft terms of reproductive health, choice and compassion have paved the way for a dangerous and insidious culture that perceives personhood in terms of utilitarian values. Thus, the unborn, the disabled, the infirmed and the elderly, all persons whose lives are dependent on the ethical compassions of other human beings and societal infrastructures are vulnerable commodities in this epic battle for the dignity of human life.
Frightening statistics from so-called progressive societies in Europe: the Netherlands, UK, and Belgium all bear the telltale signs of a utilitarian society which values functions of human life over the inherent dignity of being human.
This past year Belgium even passed a law enabling euthanasia for children. Here’s a great response to Belgium’s law from a disabilities activist, also a quadriplegic who has lived a long and fruitful life.
Light a Candle in the Dark
The swirling debates of these deadly disagreements melted into the background of my mind with the whir of the IV pump and the monotonous beeps of monitors. All that mattered to me in this pre-dawn pondering was symbolized in the one illuminated message, Life.
Living life with an incurable disease is hard and very beautiful and well worth the fight. Dignity comes with the design, even when we suffer. Human life is fragile and strong. My daughter didn’t walk until she was almost three, can’t really read or write and need assistances for basic tasks you and I take for granted. But she has taught us all so much about life.
Supporting and loving Johanna through ninety-one surgeries and a life of disabilities has challenged me more than any other lesson in my half century of life. Through her example, I have learned to appreciate little joys of life: the healing power of human touch and eye contact and the hope that is renewed in every sunrise.
I hope that I can introduce Brittney Maynard to Johanna before that self-imposed November 1st deadline. Maybe she would choose to spend one more Christmas with her family, realizing the greatest gift is life. Maybe Brittney would realize that there is so much more life to be lived even when we suffer. Though Johanna has never climbed the mountains Brittney has climbed or travelled the world or known the love of marital embrace, she lives a valuable life of dignity and hope. My little girl teaches the world that the dignity and value of the human person is inherent in our humanity. Even in the lives of those who cannot read or write, or speak, there are volumes of wisdom and lessons to be learned. But those lessons need time to unfold and often suffering is our teacher.
Johanna, like Brittney, was also diagnosed with a brain tumor in addition to the malformations that multiply and bleed. The astrocytoma was resected three years ago and it grew back. There is a risk that Johanna could develop a malignancy similar to Brittney’s diagnosis. But unlike Brittney’s choice to end her life with assisted suicide, Johanna lives her life with hope of brighter tomorrows here on earth and in heaven.
The day before this last surgery, my son, David, who is photographer, asked Johanna if she wanted to pose a portrait to express how she felt going into another surgery. Johanna told him that she wanted a picture that showed she is afraid, but strong. She asked to take the picture outside in the darkness and to use a lit candle to signify the hope she carries within. As I watched them shoot the picture, I could not help but see the difference between Brittney and Johanna’s approaches to suffering. Neither one welcomes the darkness of suffering. But while Brittney chooses to go to sleep, Johanna lights a candle in the dark and leads the way in hope.
Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs. Eileen can be reached at FreeIndeedFreelance.com.
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