It was the first day of spring in 2005. I was at the florist in the seaside village where I grew up, assembling a basket of flowering spring plants for my sister who had just given birth. To have my hands immersed in budding greenery, inhaling earthy scents, replaced for a few moments the pall of death which filled my world.
Later that evening I watched her pink newborn, his tiny hands curled into fists, as he sucked on them. I smiled again at a welcome break from the tragedy that flooded the airwaves, and left me feeling panicky. Terri Schindler Schiavo was being dehydrated to death in Florida, and I took it very personally.
For three years I had been blessed to be the mother of three daughters, the youngest of whom, Christina, has Down syndrome. The pundits who were judging Terri’s fitness for survival based on her motor and communication skills were hitting a nerve. My three year old wasn’t speaking yet, had just learned to walk, and potty training seemed a far off dream.
Deep in my heart, I knew that if laws were on the books which demanded that we qualify for medical treatment based on our abilities, Christina wouldn’t fare well. I was already aware that 92% of mothers whose babies were pre-natally diagnosed with Down syndrome chose to abort their baby, afraid that children like Christina would present too much of a burden.
What would happen, I wondered, if she needed a feeding tube in her later years, and her father and I weren’t around to advocate for her? Would some well-intentioned nurse decide to do her a favor by ending her life? Terri had her family by her side, yet they were helpless to give her even one drop of the water that the flowers in the vase next to her bed had. Would that be our situation someday?
I fought pain in my stomach, as I listened to Sean Hannity report from Terri’s hospice in Florida. What was a woman my age doing in a hospice, anyway? She wasn’t dying — not until her husband won the battle to remove her feeding tube. Then even an act of Congress wasn’t enough to save her life. What chance would I have of saving Christina’s life against a society which devalues the weaker members?
My husband Francisco and I had just been through the trauma of fighting for our daughter’s life inside a hospital. That winter, Christina had been hospitalized with double pneumonia, and, to our dismay, the nurses were nonchalant about her treatment. She wouldn’t take an oxygen mask, so I requested a tent, only to be told, “we don’ t do that anymore”. So we took turns holding a breathing tube to her mouth round the clock for a week.
When the oxygen alarm went off, no one came to check on her — until we called them. We brought in friends to pray with us through the nights and keep us awake, so Christina could breathe, and they were chased out by an angry head nurse who said she “was tired of parents like you wanting special treatment”. We shuddered, secretly wondering if the nurses wanted our daughter to die.
Thankfully our pediatrician defended us, overrode the hostile nurses, and allowed our friends at Christina’s bedside. It was a frightening taste of what the Schindlers were enduring, and my heart broke for them.
As Terri grew weaker and neared the end, I felt the need to do something and packed the girls in the car with the box from our new washing machine, which they had turned into a huge sign reading, “SAVE TERRI”. We picked up an elderly friend in Philadelphia, and headed to Washington, DC to protest this outrage.
We missed a rally at the White House, and instead stood on the steps of the Supreme Court with our sign, praying the rosary for hours in the afternoon sun. Christina toddled up and down the enormous white marble steps, dutifully followed by her sister. Most passersby looked away guiltily, a few smiled, and a priest joined us for the Sorrowful Mysteries. Together we remembered the Sorrowful Mother who watched her only Son killed, and begged for her intercession in a miracle.
The Supreme Court produced no miracle, we drove home to Philadelphia dejected. To lift our spirits, I took the girls to see the Liberty Bell, and, upon seeing it, I broke into tears. I thought about how far my country had wandered from the intentions of the signers of the Declaration of Independence, when some are deprived of the right to life? Terri died the next day on March 31, 2005.
There was a mixed reaction in my home; grief, relief that her suffering was over, and anger that her husband who had promised to use the malpractice money for therapy for his wife, did everything in his power to make sure that she died. He was living with a women with whom he had two children while married to Terri. Not divorcing Terri entitled Michael Shiavo to inherit Terri’s money, perhaps this was why he insisted on not leaving her to be cared for by her willing parents.
I struggled with dark emotions, until, later that week, I learned that Pope John Paul II was dying. It moved me that, in one of his last acts on earth, he accepted a feeding tube. He was actively dying and Church teaching for those in his situations was that he didn’t have to use one, however, it was as if he chose to die that week, using a feeding tube which Terri was denied.
He was teaching us how to die well. I was sad to lose my beloved Papa, however, his death, surrounded by thousands keeping vigil outside his apartment, was so inspiring, I was uplifted.
It was this week of death in springtime which made me into an advocate for those with disabilities. I knew that I had to work on making the world a place where your intelligence, your ability, or your income didn’t make you a person worthy of love, your very existence did.