With a growing awareness of my capacity to want to care for and support others, in the early months of 1997, I became a volunteer with the hospice wing of Warren's employer, Pinnacle Health. Like so many others who volunteer, I joined hospice to make a difference and support them in their valuable work. In south central Pennsylvania at that time, palliative and end of life care was provided within patients' homes and not in a specific building designated for such care. Initially, I'd expressed an interest in working with cancer and AIDS patients. However, after hearing me on the telephone to them, the two perpetually cheerful volunteer coordinators named Val and Lisa had other ideas. So, come March of that year I began working in the hospice's main office on the outskirts of Harrisburg. After revealing my recent hotel work and proficiency on the phones, the current receptionist, a lady by the name of Maryanne, trained me up on the hospice's phone system. Having quickly gaining her confidence in my abilities, Maryanne soon left me to my own devices, fielding a glut of calls for the Chief Executive, Denise Harris, along with the various hospice nurse co-ordinators.
Despite not being a great reader as a child, studying for the GED the year before had enabled me to hone the ability to concentrate long enough to read a book from start to finish. Beginning in Southsea the year before, I chose 'The Hobbit' by J. R. R. Tolkein as the first book I'd read from cover to cover. The fact that this book had been read to my class by our second year primary school teacher made it an obvious choice, while the second, 'Great Expectations' by Charles Dickens, I began reading during my first week with hospice. Being a volunteer, I wasn't subject to the same restrictions as the rest of the staff so I'd take the opportunity whenever I could to steal a moment between calls to dive back in between the pages.
Having transferred one of the many calls I'd put through to Denise one particular day, I then opened my book, rested it on the glass topped desk in front of me and began reading. Just then, I glanced down at a piece of paper that had been slid underneath the glass and now sat between the open pages of my book. Printed on the paper were the names of all the patients currently in hospice. Making my way down the list, I took note of the names and their respective nurse co-ordinator. On account of its uniqueness, the last name on the list, a man by the name of Kyle Klock, especially caught my eye. Just as I began repeating the name over and over to myself, Val, one of hospice's two volunteer co-ordinators, came to the reception desk and, smiling broadly as she spoke, asked me if I liked children. Professing to being a big kid at heart, I answered in the affirmative.
Following my reply, Val revealed that a need had arisen for something to be put in place for those children who had lost a family member in hospice. She went on to explain how Pinnacle Health were proposing to run a two-hour bereavement workshop every Monday evening for six weeks at the Harrisburg office. The workshops were designed to create a safe environment where children could openly express their grief and learn to overcome their feelings of sadness and loss. Depending on the success of the workshops, the team were planning on running a weekend summer camp on a similar theme later in the year. So, over the next six weeks each Monday evening I found myself among those considered the new best friends of approximately fifteen children between the ages of six and twelve. Designed to address the children's thoughts and feelings, facilitators used the workshops to explore concepts associated with child bereavement, one example being 'magical thinking', the belief some children hold that their thoughts or actions caused their loved one's death and the guilt associated with these thoughts.
On the other hand, fun and laughter would also be used to great effect to normalise feelings of grief. This particular element involved us all sitting in a circle and performing the actions featured in the Michael Rosen book, 'We're Going on a Bear Hunt', where a family looking for a bear face a series of obstacles in catching one, likening the obstacles the family faced to those of grief in that while you cannot go under or over the obstacles, instead you have to go through them. The last session of the six week workshop ended with a moving candlelit ceremony during which we all sat in a large circle while 'Tears in Heaven' by Eric Clapton played in the background.
Such was the success of the workshops that they would be held again in the autumn, while the summer camp version, entitled 'Camp Dragonfly', would be held at a Christian camp half an hour north of Harrisburg in June of that year. Such was my connection with the young children that I'd be invited to participate in both, which I'd go on to do during a period of three years. Indeed, the ease with which I interacted with the children and how quickly they focussed on me was not lost on Val, who'd approach me once more, although this time with a request so surprising that afterwards my life would never be the same again.
With the bitter chill of the Pennsylvania winter beginning to ease, nothing but slush remained on the ground as I pulled up outside 1222 Kings Circle in Mechanicsburg, twenty minutes from my home in midtown Harrisburg. Having turned the car engine off, I sat there and pondered Val's words the week before that they simply could not keep volunteers in with this family. To my question why, Val disclosed that with most volunteers being parents and grandparents, they found the circumstances simply too upsetting upon learning that the patient was a terminally-ill three year-old child, a boy by the name of Kyle Klock.
Subsequently, I'd learn that Kyle was stricken with incurable Tay-Sachs disease, a condition formerly more common in the Eastern European Jewish community, although many cases now occurred in people from other ethnic communities. The fact that Kyle's parents, Rob and Karen Klock, had no Jewish heritage in their respective backgrounds illustrated this point. Furthermore, where both parents are carriers of the fatal Tay-Sachs gene, a twenty-five percent chance that any offspring would inherit the faulty gene and develop Tay-Sachs is created. Rob and Karen's concerns were initially raised when Kyle couldn't sit up by himself and, following tests, Tay-Sachs was diagnosed with both parents identified as carriers. Thankfully, Karen and Rob would go on to have two more sons following the birth of Kyle, both of whom were born free of Tay-Sachs. Both highly athletic, Rob and Karen hailed from sporting backgrounds and played at collegiate level for their respective universities, with Rob playing American football at nearby Shippensburg while Karen played hockey at Gettysburg.
Despite some mild apprehension that I might go the way of the other volunteers, I walked along the path that led up to the front door of an enormous detached house which stood within a development of similarly enormous detached houses with their immaculately manicured lawns and rang the doorbell. A petite lady with short red hair answered the door and beckoned me inside. Introducing herself to me as Kathy, she explained that she was also a volunteer with hospice and had been the only one to stay since Kyle came into the service. Following Kathy across the hardwood floor of a spacious reception area, we then descended the few steps leading down into a huge living room.
My attention was immediately drawn to a peculiar bowl-shaped chair to my right, the kind of which I'd never seen before. Approaching the chair, upon reaching it I looked down and saw a small boy cradled within. His fine blonde hair was parted on one side, while his head appeared bigger and out of proportion to the rest of his body. His t-shirt had also ridden up, revealing his chubby little belly. As my eyes start to moisten, I crouched down beside him and clasped my hand around his, to which he suddenly flinched. At this, Kathy explained that Tay-Sachs babies were easily startled by sudden noises and movement. His growth entirely consistent with that of a healthy three-year-old child, Kyle didn't look like a baby at all. It also didn't escape my notice that his hand was cold to the touch while his eyelids, which twitched and fluttered briefly, were barely open.
Continuing with her briefing, Kathy described how Kyle was blind, most likely deaf, and had difficulty swallowing, so had to be fed his oat thickened Ensure drinks as if he were a baby. Offering two cautionary notes, Kathy warned there'd be occasions when Kyle would drink his bottle before throwing the entire contents straight back up again while if he were to become constipated, we'd need to go in with a lubricated pinky and dig it out. Undeterred by either prospect, I immediately felt that I'd do anything to help this little guy and upon leaving him and Kathy that day I knew I had to come back.
Indeed, the next time I visited I'd meet not only Rob and Karen, but Karen's mum, Jean, Karen's younger sister, Katie and Kyle's cute yet rambunctious one-year-old brother, Trey. A little over a month later, at Kyle's third birthday party on 17th May, I'd have the pleasure of meeting the rest of the family in the form of Jean's husband, Bill, Katie's husband, Anson, Karen's younger brother, Tom and his wife, Staci. Despite the hopelessness of their situation, I came to know them all as being among the kindest and friendliest people I could ever have hoped to meet.
While I'd begun working with them as a hospice volunteer, the family soon treated me as one of their own and before long I started babysitting both Kyle and Trey, either at their own home or at Jean's. As a special treat one July weekend, the family invited me to accompany them to New Jersey for babysitting duties at Jean and Bill's beach-front retreat in Ocean City, three hours to the east of Harrisburg. Regardless of such precious moments, the hourglass sands continued their unstoppable flow downwards and with Kyle becoming less tolerant of sustenance and starting to lose weight, it became apparent by the end of the summer that his illness was progressing to its final stage.
Most of the time during the previous four months leading up to August had consisted of keeping Kyle comfortable, fed and clean, and helping out with basic household chores. Regardless of the likelihood that he was deaf, the best thing I felt I could do for him, as you would with any child, was to read to him. Armed with two Winnie the Pooh books that Warren's mother had sent him, and in the vain hope that he might hear me, I'd read to Kyle while he lay either in my arms or in his bowl-shaped papasan chair. Needless to say, my attachment to him was such that during those times when the realisation of my own helplessness overwhelmed me, I'd often return home to The Parkway where I'd lock myself in the bathroom and cry.
While reluctant to turn my attention away from Kyle, the time to recommence my formal education had arrived and during the last week of August I began studying at HACC. My intention at that time had been to embark on a two-year associate degree at community college level before completing my final two years of undergraduate study at a four-year institution. I hadn't anticipated how well I'd perform over the next year, with my grades over both semesters good enough to earn a full scholarship to Dickinson College, one of the original thirteen colonial colleges, located about half an hour's drive west of Harrisburg. However, it'd be difficult to see beyond the end of next week, let alone a year's time, following what transpired that late August Saturday night.
With Warren on a night shift, at about 10.30pm I decided to check the online news before heading to bed. While our dial-up modem sounded its usual peculiar tones, I lent down to stroke Dee Dee, who had followed me into the sun room and laid down by my feet next to the computer desk. Suddenly, the America Online welcome screen appeared along with a news alert which read 'Diana crash boyfriend killed'. At this, I logged off and immediately turned the television on to CNN and saw displayed a strapline along the bottom of the screen which read 'Princess Diana Injured'. While the station flitted backwards and forwards between the New York studio and eyewitnesses being interviewed above the tunnel in Paris, I cast my mind back to the documentary that had aired in America the month before which showed footage of Diana shielding her face with a tennis racquet while rushing through an airport in an attempt to evade pursuing photographers. The most poignant part of the documentary was an interview with Diana being played over images of her during which she asked the question 'knowing what comes with me, who would want me'? To hear Diana pose her question with such pathos immediately filled me with pity, rousing the defensive side of my character, a side that wanted to protect her.
As I continued to listen to the accounts of those passing the Alma tunnel at the moment of the crash, the clock approached midnight. Switching suddenly from Paris back to New York, the wording 'Princess Diana Injured' at the bottom of the screen abruptly changed to 'Princess Diana Dead' at which point the newsreader confirmed the dreadful truth. Staring in disbelief at the television screen and unable to comprehend how this could have happened, and in such a tragic way, at once I began to cry.
In the week that followed, with their wall to wall television coverage, the media continued to pore over every little detail of Diana's life and death. Leaving HACC on the Monday afternoon, I turned on the car radio to listen to the afternoon show on popular local station, WINK 104. The show opened with a replay of a casual joke made about the Princess the previous Friday followed by the host DJ lamenting the events of the weekend. For the first time in a year, I missed the UK and wished to be back there to mourn Diana with my fellow Brits. However, it brought some degree of comfort to see how moved many Americans were by her sudden death, with books of condolence opening in the British Embassy in Washington DC and other locations around the US. Similarly, an article appeared in a local publication illustrating the extent to which the American public had taken Diana to their hearts, lamenting that she was not only Britain's princess but theirs as well. Like everyone else moved by Diana's tragic and unexpected death, I spent much of the following week in tears. Yet, while the world mourned the loss of a princess, the flame burning for my little buddy over in Mechanicsburg had started to flicker and fade.
While Kyle's body continued to weaken, September soon became October and the leaves had begun to change. Although I wouldn't make it to Vermont or Virginia to enjoy the spectacle on a grander scale, the patchwork hues of red, yellow and orange seen from our apartment window across the Susquehanna River provided me with a glimpse of the awesome power of mother nature. Yet, the work of a force more powerful was almost complete and in the late afternoon on Sunday 19th October I drove over to Mechanicsburg, Winnie-the-Pooh books in hand, to read Kyle his final story. I entered to find Kyle settled in the sun room situated off the main living room.
Too weary by now to shudder and groan in the way he would whenever we moved him, Kyle's father Rob placed him in my arms then gently pulled the door closed behind him. Kyle had been a heavier little guy to move before although by now he felt so light in my arms and that chubby little belly that first greeted me had all but disappeared. Leaning forward, I softly kissed his pale white brow, which had become that much more pronounced with the weakening of his facial muscles.
Despite my breathing at once becoming more rapid and shallow, I opened the book and attempted to read. However, I hadn't even made it to the end of the first line before a wave of intense anguish overwhelmed me, the dam broke and a rush of tears burst forth. With my face pressed against his as I held him to me, a steady flow of tears streamed down my cheek and straight onto his and a searing pain tore through my chest. With her death still very much on my mind, once I'd stopped sobbing long enough to be able to speak, I said the only thing I could think of that might bring any comfort in that moment, murmuring to Kyle that the Princess would take good care of him. Unable to sleep, I'd return late in the evening the following night to check on them all and found Rob, Karen and Jean all curled up asleep on chairs in the living room. The next morning I awoke to a phone call from Jean's housekeeper, a kindly lady named Teri, who had called to tell me that Kyle 'was with the angels'.
En route to Kyle's funeral, and almost making myself late in the process, I stopped off to buy a red rose to place on his coffin. For some reason, I didn't get the message about the white roses that would be available at the cemetery for each mourner to place on his coffin and ended up giving my red one to Jean, who placed it atop Kyle's coffin among a sea of white ones. Having arrived at the Myers-Baker Funeral Home in nearby Camp Hill with minutes to spare, I'd lost the seat the other volunteer Kathy had saved me beside her and instead listened to the service from a side room in the home. While others struggled through their eulogies, Jean delivered hers with a moving story about the 'feisty little spirit' that her grandson embodied. The following year, Rob and Karen would give birth to their third child, a son named Tommy, who like his older brother, Trey, would thankfully be born free of the dreadful Tay-Sachs disease.
While I'd continue to participate in the twice yearly bereavement workshops and weekend summer camps, for now, my academic studies prevented me from providing further palliative or end of life care. However, the experience had changed my life by revealing to me my innate capacity to be able to care for others in this way, albeit with a sense of guilt at feeling that I received far more than I ever gave, although I suspect the Klock family may beg to differ. So, if I'm ever asked whether I've had my heart broken, the answer is yes, I have, by a three-year-old boy named Kyle James Klock, born 17th May 1994, died 21st October, 1997.
