I asked Ken and Sharon Krall from Sacred Heart Church to speak at our vespers series on Sunday February 28, 2016. They capture so well the art of mercy walking with their family members with special needs.
On Loan From God (By: Ken)
My childhood was a happy and safe one. My older brother Mickey and I lived with our parents in a pleasant but modest Cleveland neighborhood, within a short walk of our elementary public school, Catholic church, supermarket, and movie theater where for 25 cents we often enjoyed Saturday morning matinees of 20 cartoons and a serial episode of Flash Gordon Conquers the Universe.
My 11th birthday came two weeks before the Soviet launch of Sputnik, the first artificial earth satellite. Grownups were stunned and dismayed that America had been beaten in this first step into space, and felt that this changed everything. But I was experiencing my own personal life-changing event. We had just been told we were going to get a baby sister, and I was thrilled to begin planning all the fun things we would do. And I would love her and protect her from bullies, and teach her all the important things little kids needed to know.
Marianne was born a little on the light side according to our parents, but to me all newborns seemed a little on the light side. It wasn’t until several months later that my parents came home from the pediatrician’s office and shared with my brother and I that Marianne was profoundly retarded. I didn’t learn until much later that the term “profound” covered the 1-2% of the retardation population that never achieved IQs above 20-25. But at the time, even a dopey 11 year old knew that this sounded serious, although I didn’t know the extent to which this changed my plans. I’ll never know just how that day affected other members of the family, though it must have devastated our mother, who must have yearned for a girl companion in the household, and who may have had doubts about having provided a safe pregnancy for Marianne. And as a stay-at-home mother, she would be the one to accept most of the burden of Marianne’s day-in and day-out care. I was too immature to understand or to provide comfort to my mom during this time; rather I was too focused on my own pain, a pain that has lessened with time but still remains.
Although I had hoped Marianne and I could still develop a loving and meaningful relationship, I recall precious few joyful memories I can hold on to. Over the years Marianne was able to develop a vocabulary of several dozen words, but mastered only a couple of 2 or 3 word phrases. She often ignored my first attempts to communicate with her, looking off into space until a second or third attempt was made, and she had a habit of looking to a parent when responding with a word or a shake or a nod. Granted, I was occasionally able to buy her attention with french fries or frozen custard from the new hamburger stand she referred to as “Donnels”, or finding her favorite cartoons or children’s shows on TV. But it is difficult for me to picture her looking me in the eyes and responding TO ME during our encounters.
Because of the real and/or perceived insensitivity of many people toward those with retardation, our parents –and particularly our mother- turned inward, circling the wagons of the immediate family to protect Marianne, and in so doing, seldom again enjoyed their previous relationships with relatives and friends. It was to their credit that they remained loving, attentive and proud parents of their sons, carefully concealing their sorrows over lost dreams.
Marianne was 10 when I left home for graduate school and two years of active military service. While stationed in Germany, I had the opportunity to visit Lourdes, France, and sent Marianne a small bottle of spring water from the Lourdes Grotto. It must have been fifteen or twenty years later, while I made one of my two or three visits a year, that mom showed me a small empty bottle that I almost didn’t recognize. She had that same look as when we were out of milk and she hoped I could soon pick up more. She had carefully blessed Marianne every night of those many years from that little bottle. That was our mom.
Marianne had a special relationship with dad, spending hours in the yard while he gardened, often going down the driveway to visit with mostly friendly and understanding passer bys. In the winter, he would shovel snow and throw an occasional snowball in her direction, eliciting a hardy giggle. Her happiest time of day was going upstairs at bedtime. In her cozy bed, she would get a case of the giggles, and laugh back downstairs to dad, and back and forth they would laugh, over nothing in particular. There were times when outbursts of grabbing or pinching left mom with bruises on her arm. Dad was so hurt by these incidents, and Marianne would sense it. She would sit down next to him, put her arm around him, look him in the eye and let out a mournful groan. That was their relationship.
Marianne continued to live at home, with our parents until the age of 40, being picked up daily by the bus that took her to workshop, freeing up mom – and dad once he retired – for several well deserved hours. During my visits, she did let me hug and kiss her at her bedtime, and she welcomed my bringing her “Jesus” in the form of Eucharist when dad’s health failed and he could no longer drive them to Mass. But there was never that closeness that I had hoped for, and she would always remind my parents that visitors were for saying “Bye Bye” to.
She moved into a group home when she was too much for my father to handle, and he died shortly thereafter. On a weekend visit to our mom’s, as they walked in the neighborhood, she lost her balance, fell, and although not suffering injury, never again walked on what had suddenly become rapidly deforming legs and feet. She survived another five years in a nursing home with the benefit of a G-tube and tracheotomy, once her swallowing muscles weakened. Marianne passed away, weighing less than 80 pounds, with a simple “failure to thrive” explanation on her death certificate.
We will never know of Marianne’s thoughts, her joys and fears, her dreams. Did she understand her place of importance in our family and in the world; did she understand that she often touched us all with moments of joy and sorrow? Or did she just live her life simply one moment at a time, experiencing community, appreciating simple pleasures as they came, loving when she could and struggling with challenges when she had to? She was, and always will be, a child of God.
Looking back, I marvel at my parents’ incredible love and sacrifice, and the awesome examples they set for me. As for myself, in some of my troubled moments of unproductive thinking, I would ask myself whether an act can be considered one of kindness and mercy if it appears to be unnoticed, unappreciated, or of no apparent benefit to another human being; there was a fear in my heart that such acts are in vain.
An answer to my questioning comes to me from Matt 25: verse 40:
“And the King shall answer and say to them, Truly I say to you, Inasmuch as you have done it to one of the least of my brothers, you have done it to me.” Curiously, most English translations read when “you have done it to one of the least of my brothers”, not when “you have done it for one of the least of my brothers”. This speaks to me that even if an act of kindness has no apparent benefit to or acceptance by the other person, the intention behind it is pleasing to God, and is therefore never in vain.
In First Corinthians, St Paul teaches that Love never Fails. I’ve come to believe also that Mercy never fails, and taking some strength in this belief, I’ve become more willing to risk rejection of my efforts, when choosing to treat others with kindness and mercy.
Finding Mercy (By:Sharon)
(Jesus Heals the Man Born Blind John 9:1-3)
As He passed by, He saw a man blind from birth. And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.…
Take a mental car ride with me now: It was a beautiful Sunday morning and as our family was driving home on that Sunday morning it was along 30th street, at just about the juncture of the turnoff to the Garden of the Gods Park.
Our normally restrained fourteen-year old first-born son suddenly spoke up: “That reading today makes me know now why God made me like I am” he said. “I kept wondering why I had to have this epilepsy and nobody can do anything about it. But now I see that my disability is on me so that when people see me, people will remember to be kinder and more Christ-like to each other.”
I looked at him and for really the first time in fourteen years, I stopped raging against “the Machine” and the “the Elements” and the doctors, and yes, even God. I stopped and at that moment I put away the horrible grief I’d carried each day because MY goals, and dreams and ambitions would never come to fruition in THIS MY CHILD because of this debilitating disability. I stopped and at that moment I made peace with the crushing guilt that maybe I really HAD done something bad enough to cause my child to “be this way,” and all the doctors and specialists and therapists were just being kind to me by telling me it had nothing to do with anything I’d done or not done. I stopped and at that moment I looked at Stephen Christopher Krall in a way that I hadn’t looked at him in a very long time: as a whole person, beautifully, wonderfully, and perfectly made by God just as he was. Mercy had come to me through looking at my child at that moment. And I loved him even more fiercely than I think I ever had before.
Oh, I have always loved Stephen with fierceness. Maybe with a kind of fierce anger, truth be told. His epilepsy began mildly when he was at the end of second grade. The doctor said there was a good chance he’d outgrow the seizures. Even with medication, it began to affect his ability to focus and learn things through the third and fourth grade and as the seizures manifested more frequently and in more bizarre ways, Ken and I began learning new words such as absence seizures, tonic, seizures, clonic seizures, and then finally, grand mal. Then began the parade of anticonvulsants, and with them all their demonic side effects.
By the fifth grade, the school system insisted Stephen be put in Special Ed. I had an incredibly difficult time accepting that because I remembered Stephen’s testing at a high IQ as a young child, and he read and spoke on an adult level–when he wasn’t recovering from a seizure or drowning in the effects of the cocktail of three anticonvulsants.
Mothering Stephen included countless calls from school reporting Stephen has had a seizure, Stephen has fallen and gotten hurt, Stephen keeps falling asleep in class (too much anticonvulsant cocktail), Stephen just sits glassy-eyed and unresponsive, drooling (WAY too much anti-convulsant cocktail). When our other son, David, in kindergarten, saw Stephen, in sixth grade, being made fun of on the playground, ran to fistfight the bullies, I knew exactly how the little guy felt; I wanted to fistfight anybody and everybody too.
In 7th grade, and in Special Ed, one of Stephen’s classmates’ mothers worked at the same place as I did. She sought me out and asked me if I’d thought about allowing Stephen to try Special Olympics. Mentally I flinched. I didn’t think he belonged with those” types of people. I said all he’d really done is participate in soccer when he was younger. “Great,” she said, “We have a wonderful indoor soccer program right down the street from where you live, so bring him tonight after work.” What could I do?
I initially kept myself apart from the other parents that night, and I watched as all kinds of strange-looking and hindered children tried to kick the ball into their net. Our “normal” child was also invited to play because Special Olympics was trying out a new concept of “partnering”. Both children took to it like ducklings to water and we never turned back. I screamed myself hoarse that night, rooting not only for my team, but for everyone who was participating. Besides indoor soccer, Stephen and David have played soft ball, downhill skied, cross country skied, snow-shoed, played basketball, floor hockey, swimming, track, bowling, roller skating, ice skating, soft ball, and outdoor soccer, all through Special Olympics. I got to know the parents and adults and developed a deep love for them and their children. How could I not?? Never was there anyone who a seizure disorder just like Stephen’s but that finally had become ok with me. As Stephen grew older and became less and less able and his brother grew up and moved on, Stephen played bocce for a few seasons and now does not and cannot participate in Special Olympics because he is essentially too disabled physically to do so.
It was during that 7th grade era, i.e., special Ed ., and finding Special Olympics, that my son Stephen accepted himself just as he is and with the sure knowledge that God and his family love him, he in turn found he could love himself. What wise and very adult thinking. It has carried him through countless, convulsions, brutal batterings, especially to his face, of a broken nose numerous times, broken bones, resulting scars everywhere, lost teeth, diminished hearing, a life of wearing a helmet. And yet he prevails.
Stephen knows who he is. We know him as a kind person, spiritual, and a deep thinker who has a wry sense of humor. Stephen is no more a saint than you or I but ask him and he will tell you that he is a disciple of Christ, whose God’s many Great Works are Manifest in him. To mother him has of course been an opportunity to show him mercy but his life has also helped me to be merciful to people I would never have even allowed myself to be in the presence of, much less to know intimately, and follow and care for and their lives for years! I am open to people’s suffering because we know what suffering is, too.