I have always felt that I could be a writer. However, I could never come up with an interesting topic. There is one exception to that: our youngest child (the fifth of five), Colin, was born in 1984 and passed away in 1991. His life was the high point/low point of our lives. He was such a sweetheart! On the first anniversary of his death, which occurred on August 4, 1991, I wrote the following. It poured out of my heart. Everyone who reads this somehow brings Colin back to life, and that makes me very, very happy and very proud. After you read this, you, too, will be his friend. Enjoy!
Jim Willis
August 4, 1992
A year ago today, my son died. A year ago today, my six year old son, Colin died. A year ago today, a big part of my life, a part that I cannot retrieve, died. It just shouldn't be that way. I buried my 84-year-old-father a little over 3 years ago, and my mom died when I was 16, and even though both of those deaths caused me much sorrow, they were in the natural order of things. A child should bury his parents. But a parent bury his child! No! That's not the way it should be. I have a very strong faith, and thank God I do (as faith is crucial in my dealing with all of this), but someday I hope to have the chance to ask the Creator about why Colin died so young. I know He will have the perfect, loving answer, and I already have a few insights into what He might say, but I still must ask the question.
Colin was our fifth child, Claudia's and mine. I didn't "sit in" on the births of our first two children (Erin in 1970 and Robert in 1971) because, like many men, I thought the experience would be too gory, and in those days, men typically stayed out in the waiting room and paced or smoked or both. I did both. In 1977, Corrigan, Willis child #3, entered this world, and I was there. I had heard about the "miracle of birth," but those words were just a pious phrase for me until that day. It's almost impossible to put into words the pride, joy, ecstasy, awe, and humility that one can feel at that moment. Suffice it to say that I felt all of those things -- and many more. One humorous thing happened at Corrigan's birth. When he was only a few seconds old, the doctor placed him on his back on Claudia's stomach, and he proceeded to urinate into his own eye. I said, "welcome to the world, son," and the obstetrician and attending nurses were in hysterics. Just a few minutes before, he was warm and cozy in his protected environment, and then all those muscles were pushing on him, he came out into the cold world, lights were shining on him, people were touching him, and then this "stuff" was hitting his eye. You just have to like someone who begins life that way. He has lived up to being a character ever since. In 1979, our fourth child, Kenon, was born, and I was again present. He managed to control himself at the time.
But then the date was October 23, 1984. I was 40 years old, and Claudia was 36. That particular year (1984) had been by far the most difficult of my life. Besides my full time job as an English and Latin instructor at Granada High School in Livermore, California, I spent three hours per day after school teaching students to drive. Two nights per week, I taught a college-level English class at a nearby federal prison (FCI -- where Patty Hearst and Sara Jane Moore were incarcerated), and Claudia and I were in charge of the youth ministry (high school age) group for our local Catholic parish, St. Charles. About 100 youth showed up every Sunday night for our meetings, and besides putting together those meetings -- which had to be inspiring and entertaining to keep the kids coming -- we also had to arrange weekend retreats, seminars, social functions, outreach programs into the community, etc. We probably put about 20 hours per week into the youth group. Every Thursday night, for instance, I spent two hours in a room at the church, and young men and women could talk with me in confidence about anything. I was overwhelmed at some of the misery in the lives of those seemingly ordinary young people. Many laid their problems on my shoulders, as did some of my students at the federal prison.
As if all of this weren't enough, a local family was going through a divorce, and their 16 year old daughter stayed with us during the 1983-1984 school year. We were thus exposed to teenage problems a few years before we were quite ready for them. One other problem I was facing at the time was a high school student of mine who was making sexual advance toward me -- a problem I found very difficult to handle. And then Claudia became pregnant (unexpectedly) for the fifth time.
The upshot of all this was that on March 21, 1984, I had a severe anxiety attack, and it happened in front of my students at Granada. We were reading Arthur Miller's Death of a Salesman aloud in class, and I was reading the part of Willy Loman. All of a sudden, I felt as if I were standing on the edge of a steep cliff, reaching back, and holding on to a spiderweb-like string. That string was sanity, and if I let go of it, I was finished. All I could think of was that I was going insane and I was leaving Claudia with four children and pregnant with her fifth! That evening, she took me to the hospital, and, after much testing, the doctor prescribed valium (three pills). I was afraid to take those pills because if I recovered, I would be convinced that the pills had cured me and that I would "need" them any time a problem arose. To this day (more than eight years later) I still have those three pills. I rested for about four days, quit my job at the prison, and scaled down my time with the youth group. I was a volcano that erupted. We can only take so much pressure in our lives before we somehow explode. That was the most frightening experience of my life.
Also in 1984, I took out a sizable second mortgage on our home for investment purposes. Unfortunately, the real estate broker that I invested with went bankrupt a few months after I turned over the money to her. My $27,000 went directly down the drain. That was probably the most maddening experience of my life.
Are you catching a general drift about my year in 1984? I've often thought that I would write a book and entitle it Damn You, George Orwell, but he (and that year) are things I want to forget, not remember, and so I'd rather write about Colin, lest I forget.
I mentioned that I was a volcano. Well, maybe instead I was an earthquake, and as an earthquake fault has to let off pressure through little quakes occasionally to avoid "the big one," I had to have the anxiety attack so that I could deal with the much larger "tragedy" that was to hit our family in October of 1984. The night was October 23. Claudia and I were in the delivery room awaiting the birth of our fifth child. At Corrigan's and Kenon's births, the first words of the doctor were something like, "You have a healthy little boy!" This time the first words were, "We have a problem." Can you imagine what those four seemingly harmless words did to us? It was like driving spikes right through our hearts. At his birth, there was an immediate burst of activity by doctors and nurses, and some obvious anomalies. He had a cleft lip, a bilateral cleft palate, two abrasions on the top of his head where the skin did not close properly, an additional finger on each hand and an additional little toe on each foot, very tense muscle tone in his legs and arms, a hernia in the groin area, and a narrow artery between the right lung and the heart. With all these anomalies, the doctors immediately suspected a chromosomal abnormality, and so a geneticist from Oakland saw Colin late that morning. He took a blood sample so that white blood cells could be grown for a chromosome study. By that next Saturday, the test results were in.
Colin was diagnosed as having a rare syndrome called Trisomy 13. The prognosis for the syndrome was congenital heart problems, respiratory problems, severe to profound mental retardation and a much shortened life span. We were told that 60% of such babies die before they leave the hospital, 30% live up to a year, and about 10% survive to three years of age. Colin lived to almost seven, and so, as you can see, he was in the very top percentile. What a stud -- well, he was a Willis! Colin, thank God, did not have congenital heart problems, and all his major organs and digestive system worked well. While most such babies are around four pounds at birth, Colin was seven pounds. He also seemed stronger and more alert than most such babies -- a tribute to Claudia's care of him and of herself during pregnancy.
I would like to relate one incident from the night of his birth. When he was just a few hours old, a doctor asked me if Claudia had had amniocentesis done. If so, we would have known ahead of time about Colin's genetic "condition." The implication, I thought, was that if we had done that testing, we would have known a problem existed, and, of course, we could have "taken care of" that problem. I interrupted the doctor in mid-sentence and told him to end the discussion immediately before I became too irritated. I am a big man, and I was going through some intense emotions that night. I let him know that Colin was not a problem; he was our son. Most of the doctors we dealt with during Colin's life were wonderful; that particular one could have used some sensitivity training.
Colin spent his first week of life in the neonatal intensive care unit, and we learned to greatly appreciate the courage and caring of the nurses there. They did so much for us, and apparently we did something for them. We later learned that one nurse, who was married to a pediatrician, had been afraid to have children because she was daily working with children who were very sick or even dying. Apparently, when she saw how we all welcomed Colin into our family with so much love, she began to reconsider her opinion on having children. It's amazing the impact we can have on each other's lives!
From the beginning, we never asked "why," either of God or of the doctors. There was no good answer to that question, and it could only lead to bitterness and even blame. Instead we asked "what" -- what do we do to make Colin's life pleasant and meaningful, and what do we do to learn to deal with the adjustments he would bring into our lives? We lovingly welcomed him into his special place in our family and in the process became, I believe, stronger, more loving and more compassionate. I think that was the healthy way to deal with the situation.
In the first few weeks of his life, we had three very frightening experiences. The second and third were almost carbon copies of the first incident, which I'll now relate to you. One time Colin started to aspirate some amoxicillin that Claudia was giving him for an ear infection. She did all the right things -- used the bulb syringe to clear his throat and administered CPR, but he didn't respond quickly enough, and so she called 911. The firemen arrived and gave him oxygen; the ambulance then took him to the local hospital, where he was stabilized, and we then took him to Kaiser Hospital in Walnut Creek for a thorough "going-over." Claudia thought that first time that he was actually dead in her arms. That is an experience beyond description. By the way, that was just the first of many such trips.
Colin's lip and his palate were both surgically repaired in 1985, and the doctors tied off the two extra fingers. As there was no bone in the connective tissue, they soon afterward fell away. We chose to do nothing about the additional toes because they had bones in them and would have to be amputated. Why put him through any more than we had to? If we felt that he might have walked someday, then we would have done something about the toes. Over the years, he also had two hernia surgeries, a testicle surgery, and a series of ear implants. The poor little guy -- he went through such hell, and yet he was always so happy! An ophthalmologist also diagnosed a condition called Iris Coloboma, which meant that part of the iris was missing, and he also found a small cataract. Subsequently, Colin was fitted with "coke bottle" glasses, which he often ripped from his head and tossed as far as he could.
We have, many a time since Colin's arrival, thanked God for our faith, for the support of each other, and for the support from our church community and our friends. Speaking of which, when Colin first came home from the hospital after birth, we had three weeks of dinners brought in nightly to us by fellow parishioners. However, I wish the effort had been better coordinated -- in the 21 days, we had 16 lasagnas! In fact, one night (probably about the 15th of the 21), a person whom I barely knew was standing at our front door and holding a full-course meal for six. The meal included drinks and a dessert, all in throwaway containers so we wouldn't have to worry about washing and returning dishes. As I was profusely thanking this kind person, in the background, Corrigan, who was then seven, loudly said, "I hope it's not lasagna." It was! Imagine the embarrassment I felt and the lesson Corrigan then received in prudence.
Over the years, Colin made progress, but the progress was subtle. At the point of his death, he was developmentally the equivalent of about a nine-month-old. He didn't walk or talk, but he did an army crawl (occasional four-point crawling), pulled himself up to standing, sat unassisted, waved "hello" and "bye" spontaneously, spoon-fed himself and drank with assistance from a glass, and he was always in such a good mood! What a little sweetheart!
The burden of Colin fell, of course, most heavily on Claudia, and his care dominated her life. He got around in a wheelchair, and we had a van with a lift. Claudia was constantly with Colin at some or other doctor's office, and a big share of her time was taken up with just feeding him. It was a total act of love on her part.
The first few months of Colin's life were especially difficult for all of us. It would take approximately one and a half hours to feed him four ounces of milk, and he would be able to keep down only about half of that. He had to be fed in a perfectly upright position because of the cleft palate. If any milk got up inside the opening at the roof of his mouth, it could lead to pneumonia. Because he was getting so little nourishment, he had to be fed approximately every two hours. Thus, there was only about a half hour break between his feedings. That presented one problem during the day, but imagine what it meant at night! Whoever fed him (Claudia or I) slept with him on the couch in the family room. It made no sense to keep both of us awake all night. I fed Colin on Friday and Saturday nights, and by the time Sunday morning rolled around, I was like a zombie, my eyes burned, and I had a terrible headache. You see, whoever fed him got only little naps all night long, totaling two to three hours. And to think that Claudia fed him that way for five straight days (every Monday through Thursday) for almost ten months! She couldn't sleep during the day either because of his constant feeding schedule, plus she had four other kids, a house, and a husband to care for. I don't know how she did it. Oh, yes I do. I can say it in one word -- love. In the summer of 1985 (when he was about ten months old), Colin had major surgery on his palate, and that dramatically changed his eating and his life. He began to sleep like a normal infant, getting up once or, at most, twice during the night. Can you imagine how relieved we were?
I want to share one great story from the early months of Colin's life. When I went to work at Granada each day, I was often extremely tired, scared, or depressed. I had a chart on the blackboard, and every day I would mark a number on that chart, giving my students some indication of how I was doing. A ten, for instance, was the way I felt on my honeymoon; a nine, the way I felt when the Oakland A's won their third consecutive world series; a two, the way I felt when I had my anxiety attack the previous March, etc. I usually marked a five or six, and my students took their cue from the mark. They would realize, for instance, that on a "four" day, I couldn't take much noise or kidding. They were wonderful about it. And now to the great story I want to share.
For years, I had always read to my students "Barrington Bunny," a little parable from Martin Bell's book, The Way of the Wolf, on the last school day before Christmas vacation. This may sound silly, but it's a story about Barrington, a lonesome bunny who finally realizes that he is unique and valuable and that all the animals in the forest are part of his family. After coming to these realizations, however, he dies. The story is very moving, and it becomes a springboard for deep, philosophical discussions about self-worth, self-sacrifice, the unity of all mankind, prejudice, and many other topics. Barrington gave and expected nothing in return -- no recognition as the giver, not even a thank you. I feel this is the perfect giving -- giving with no strings attached, with no expectations of a return gift. Christ Himself gave the gift of eternal life to the very people who were killing Him; thus, I feel the story is a perfect Christmas story.
Anyhow, it was the last school day before Christmas vacation in 1984. I was depressed and did not really feel in the mood to read "Barrington" to my students. But then I realized that it was unfair to cheat them of the experience because they just happened to be in my class at this low point of my life. And so, I faked enthusiasm and read the story. A week or so later, on Christmas eve, there was a knock on our front door, and Corrigan (who was then seven) went to the door and then told me that no one was there but that a large envelope was on the porch. On the outside of the envelope, the following message was written in letters cut from magazines and pasted on: "Mr. Willis, here is a gift, a free gift, with no strings attached. We love you." It was unsigned. It had to be from students of mine because of the direct quote from "Barrington." I opened the envelope, and inside were 200 one-dollar bills! I sat down on the front steps and wept for about 15 minutes. I was an emotional basket case anyhow, and this act of love just set me off. What the students were saying was, "We know you're hurting, and we want to do something, but we don't know what to do. We hope this helps." On the first day back to school in January, in all my classes, I just stared at all my students with a loving smile on my face and said, "thanks." They gave (or pretended to give) no recognition of what I was talking about. And to this very day, I do not know who gave the gift! Another point that makes this story so phenomenal is that if I had read the story, say, a week before vacation, someone could have come up with the idea and organized a way to collect a dollar from each of my students. But whoever arranged this, arranged it during vacation time when the students were all at home. I don't know if it was one student, 20 students, or 200 students involved, and it really doesn't matter. They obviously understood the story of Barrington. A few times since, when I have been around adults who have been putting down teenagers, I have used this story to show them that there is another side. Every time I think of this story, I feel good all over, and I will carry it (thanks to them and to Colin) to my grave.
Having a handicapped child presents, understandably, some major challenges. It also demands a different set of expectations concerning the child. Where Erin, for instance, was a straight "A" student and excels at all she does and my other three sons were (and still are) very good students and very good athletes, Colin's retardation and physical problems profoundly limited him. That didn't mean, however, that he didn't contribute to the family in his own unique way. He was always happy, always smiling, and frequently laughing, and he taught us to appreciate the simpler things in life. He was a source of unity for us, an example of simplicity, a great gift from God. Corrigan, especially, seemed to almost idolize Colin. Every accomplishment became a big thing. The first time Colin pulled himself up to a kneeling position in front of the couch, for instance, Corrigan and Kenon went around bragging to all their friends as if Colin had just won an Olympic gold medal.
As the years progressed, Colin of course grew, but not at a normal rate. At first, after his lip and palate were repaired, he looked fairly normal, and no one stared at him. Later on, however, it became increasingly obvious that he was different. That hurt, but not as much as I might have expected. He was really a cute little boy. His condition, trisomy 13, does not have a distinguishable look to it, as does its cousin condition, Down Syndrome (trisomy 21). Little kids would often stare at him, but I don't think anyone ever mistreated him.
When he was about two, he went to school for a few hours each day at the Agency for Infant Development in Fremont. He received much stimulation and physical therapy there and made some friends, and this gave Claudia some much-deserved time for herself. She, by the way, educated herself thoroughly about the services available to the handicapped and their families, and she became a strong advocate for their rights. Colin later attended special classes at Portola and Christensen Schools, mainstream elementary schools, and had some wonderful teachers who loved him very much. Every day, a little yellow school bus, usually driven by Janet Risher, an important person in his life, would pick him up, along with his wheelchair. Colin would get so excited when he realized he was around other children. I can still picture him on the wheelchair lift going into the bus, grinning from ear to ear, and waving good-bye with his very skinny arm. What a joy he was, my little bud-bud! (Claudia called him her little "Col doll.")
I miss him. Lord, how I miss him!
And now I am going to skip to the end, and this -- like his whole life -- is going to be very hard, and yet very easy, to write about.
The date was August 3, 1991. We were into about our third day of hosting an exchange student, Jorge, from Spain, and the group was having a picnic for students and families at a park in nearby Pleasanton. The whole Willis family was there, as Erin and Robert were both home from Gonzaga University (Spokane, Washington) for the summer. The picnic was a potluck, and we played a long game of softball. Colin lay on a blanket and enjoyed all the activity around him. He also spent much time picking at the pieces of grass. For some reason, he really liked stringy things, and he loved to sit on my lap when I was flossing and try to grab the floss from me. He also loved to pull hair (thank God I'm bald), and that was his only irritating habit, a habit that caused quicker children to sometimes avoid him at school. I am right now picturing him in Claudia's arms, sucking on her chin and holding onto her hair with both hands. But back to the picnic. It proved to be his last meal, and I am so glad it was one where we were all together.
When we got back home, Claudia gave him his medicine, Depakote. He had been having myoclonic seizures (sometimes a hundred or more per day) for a year or so, and the doctors had prescribed Phenobarbital to combat them. However, in the months just prior, the seizure activity had picked up, and he was having a few grand mals. Those are horrible to witness, and I remember clearly how shook up Kenon and Corrigan got when their little brother experienced them. Apparently, the Phenobarb wasn't doing the job, and so his medication had been changed. Anyhow, Claudia gave him his medicine and put him to bed.
Because Erin was just finishing her third year away at college, Colin had had his own room for a while (Erin's room). He was still in a crib, and he and Erin shared a room that summer. She had gone to a movie that night with a friend, and she went to bed around 1:00. As was her custom, she checked on Colin at bedtime, tucking him in, fluffing his pillow, making sure he was covered, zipping up the dome tent over his crib. But that night was different, very different. She screamed and ran into our bedroom. Claudia rushed to Colin, pulled him from his crib, and applied CPR. But it was too late. It was too late! He was gone from us.
That was the longest and most painful night of my life. There was the initial flurry of activity, the weeping, the phone calls to the police, to our priest friend, Fr. Steve Swenson, to our mortician friend, Ross Hoblitzell. Fr. Steve administered the last rites, as if Colin needed them -- Colin, the only one of us who was without guilt or sin, the seemingly imperfect Colin who was as close to perfect as a human can be. But Fr. Steve's words were a comfort to us. After the firemen and police left, we had a quiet hour or so in the family room where each of us (his mother, father, sister, and three brothers) held him, prayed aloud or silently in our hearts, and said our last good-byes . Fr. Steve and Ross were also there to share the moment with us. I don't know how she knew it was the time, but suddenly, at about 3:30 that Sunday morning, Claudia stood up and handed Colin to Ross. Can you imagine how difficult it must have been for her to hand over her baby to someone else to carry out into the dark and out of his own home for the last time?
Ross told me a very interesting story a few days later. He said that when I called him around 1:30 that morning, he woke his wife, Barbara, and she told him to call her when it was time to come take Colin away. Apparently, this is traditionally done in some official mortuary vehicle. When Claudia handed Colin to Ross, however, what was he going to do -- hand him back and say, "Just a minute. I have to make a phone call"? When he and Fr. Steve walked out our front door with Colin, he turned to Fr. Steve and said, "This isn't the way we do this." Fr. Steve replied, "Well, this is the way you're doing it this time." They then placed Colin between them in the front seat of Ross' car and covered him with a blanket. What a wonderful image! Colin's last ride was between two friends, done with tenderness and dignity, not on some cold slab or stretcher in the back of a hearse. I am so thankful it happened that way!
About 7:00 that morning, Jorge, our Spanish exchange student, came blurry eyed out of his room and said, "good morning." It's hard to believe, but he had slept through all the commotion and didn't know what had happened. Claudia told him that the next few days would be very painful and we could probably find another place for him to stay. "Oh no," he said, "you are my family now. I'm glad I got a chance to meet Colin." Claudia would have fed him forever for saying that. He surely was no dummy!
The next few days were very busy around our house. There was a constant parade of people, bringing flowers, food, encouragement, and love. Of course, many arrangements had to be made: flowers, church service, mortuary, cemetery, pallbearers, etc. The pallbearers we chose were Dan Sapone, Will Sapone (age nine), Brad Morisoli, Diana Morisoli, Bob McAleer, and Janet Risher, Colin's bus driver. One funny thing happened when we chose those six. Claudia and I first asked Dan and Donna Sapone if they thought their nine-year-old son, Will, could handle being a pallbearer, and they agreed he could. When I asked Will, he said, "What's a pallbearer?" I told him that he had the opportunity to be one of the few lucky people to carry Colin on this his last and most important walk. Will said, "No problem. But why is it `pallbearer'? His name's not Paul; his name's Colin!" I then explained that a pall was a robe that hangs over a coffin. That gave Claudia a wonderful idea. We placed a white sheet on our dining room table, put colored felt pens nearby, and people who came over drew pictures or wrote good-byes to Colin on the sheet. It eventually was filled with color, with rainbows, with butterflies, and with loving messages. Erin drew a jigsaw puzzle, entitled "the Willis family." It had six pieces and one missing piece where the heart should be. Robert wrote, "Colin, have fun licking God." Colin, you see, loved to lick things and suck on things. He spent much of his time crawling around the family room and sliming everything in sight -- especially the sliding glass door and the refrigerator. As Claudia said, "He definitely tasted life." The sheet, by the way, draped over Colin's little coffin at the funeral. It is now one of our treasures.
Now to the funeral. When we arrived at St. Charles, we saw a large sign above the doorway, which read, "Welcome to a celebration of Colin's life." Also out front were three big posters filled with pictures of Colin with all the people important in his life. Everyone seemed to notice that he was smiling in every picture. That was the way he approached life!
On entering the church, we saw a marvelous thing. The church is usually set up in traditional fashion -- the altar up front and rows of chairs facing the altar. In the middle of the church is a fountain, and on Sundays we always sat on the center aisle in the middle of the church near the fountain. We would move a chair out and move Colin's wheelchair in. We did this because Colin loved the sound of the gurgling water. On that difficult day, August 7, the church had a new configuration -- the altar had been moved down to the center of the church, and the 500 or so chairs had been put in circular fashion surrounding the altar. This was done so that Colin could be in his place -- next to the fountain. What an act of love that was!
Early in the service, Claudia and I and our four remaining children put symbols of Colin on top of the pall resting on his coffin. We included his glasses, his tape recorder (he loved music), and his two favorite toys. One was a white ring with three colored rings attached to it, a toy that he sucked often and lovingly.
The music for the funeral was beautiful and extremely moving. I only wish there were a way for me now to type in the sounds. At least two of the songs cause me to immediately tear up even now, one year later. Each row of chairs had bunches of colorful helium balloons attached, and, of course, flowers were everywhere. Children played a large part in the service. At one point, they even did a little dance around his coffin, and I could almost sense Colin getting excited at their presence and beaming his infectious grin.
My sister, Lynn McAleer, and Claudia's dear friend, Donna Sapone, did the bible readings; Colin's godparents, Robbie and Jane Fowler, did the intercessory prayers; and Fr. Steve delivered a warm, healing homily. I especially loved the intercessory prayers, and here they are.
- That through the example of Colin, we may all recognize, accept, appreciate, and love the differences we see in each other.
That we all can accept yet still strive to overcome our own handicaps.
In thanksgiving for the teachers, teacher aides, nurses, doctors, and bus drivers who have so lovingly looked out for and cared for Colin.
In thanksgiving for the faith, love, and support of our Christian community.
That we, through Colin's example, may feel a sense of excitement with the simple joys of life.
That more things, which initially seem so painful, turn out to be so beautiful.
In thanksgiving for family and for friends who share in times of sorrow as well as in times of joy.
For all special needs children and their families, that they might have hope, perseverance, and courage in meeting their challenges.
That the remembrance of Colin's smiling spirit will continue to bring a smile to all our hearts and to all our faces.
Near the end of the service, Fr. Steve invited people to come up to the pulpit if they wished. The first to rise was Dan Sapone.
Dan was about the only adult whom I would call Colin's friend. Everyone liked Colin, but Dan, a former teacher and now a technical editor at the Livermore National Laboratory, really loved Colin. Whenever he was around (and that was often), he always spent time with Colin, playing with him on the floor, throwing him in the air, etc. The very last picture we took of Colin was of him sitting on the couch asleep and leaning against Dan. Anyhow, Dan was the first to the podium.
Dan said, "Jim and Claudia have often been asked what it's like to raise a handicapped child. Well, it's like this. You and your wife (or husband) have often talked about the possibility of going to Italy. Many of your friends have come and gone to Italy, and they say it's such a wonderful experience. It's so fantastic to be able to see the Coliseum, the Sistine Chapel, the gondolas of Venice, etc. You debate back and forth because taking such a trip involves sacrifices. But you finally decide to do it. So you buy guide books, you learn the language, you purchase the plane tickets. The day for departure arrives, and you are so excited. You are about to experience a dream fulfilled at last. You board the plane, fly across the Atlantic, and when you land, the stewardess walks down the aisle and says `Welcome to Holland.' Your response is `Did you say Holland? There must be some mistake.' The stewardess replies, `Yes, you have landed in Holland, and here you must stay.' You are hurt, confused, scared, depressed, angry. You get out of the plane and look around. You don't see the Sistine Chapel or the gondolas of Venice, but what you see isn't disgusting; it's just different. And so you buy a new set of guide books, you learn a different language, and you meet people you never would have met otherwise. And as time goes on, you come to realize that Holland has tulips; Holland has windmills; Holland even has Rembrandts. And the rest of your life, as your friends come and go to Italy and talk about how wonderful it is, it hurts deeply because you've had a dream ripped away from you, and the loss of that dream can never, never be replaced. But if you spend the rest of your life bemoaning the fact that you didn't go to Italy, you might not realize how beautiful it was -- in Holland." (Adapted from "Welcome to Holland" by Emily Perl.)
What a great story! A lady then walked up to the microphone and, with a thick Spanish accent, said, "I work in Holland." It was Rocio Smith, the director of Alameda County's Department for the Developmentally Disabled. She had been the head of the Fremont school where Colin had been a student . She mentioned that one of the sad things about her job was that she often had to attend children's funerals, but she had never been to one anywhere nearly as moving as Colin's.
She was followed by a teenager who had baby-sat Colin and an elderly lady who had been his nurse. Donna Sapone, Claudia's best friend, then presented a loving tribute to Colin and to Claudia's care for him. Among other things, she said, "I've heard Jim often refer to Colin as one of God's little spies." She then turned towards his coffin and said with a beautiful smile on her face, "Well, how did we do, Colin?"
I then delivered a short, for me, tribute to my youngest child. I said, "For years, I have heard people use the word special when referring to children like Colin, and I always thought it was a euphemism, a way of not having to say handicapped, disabled or retarded. How wrong I was. I have four normal children, and I had one special child. If I had been asked seven years ago if I would like to have such a child, I would have said, `Hell no. Who needs the pain?' But now that I have been through the experience, I realize that I was one of the few lucky enough to have such a child. Don't get me wrong -- having a special child includes many burdens, many heartaches, but even more rewards, and I wouldn't trade the experience of being Colin's father for anything in the world. He was special, and he made my life special." God, how I miss him.
My 19 year old son, Robert, then walked up to the pulpit. Claudia grabbed my arm tightly at the time because he was the one of our four children who didn't seem to be reacting to Colin's death, and we were worried about him. Corrigan, for instance, who is very effusive, was down in his room punching his wall and yelling on the day of Colin's death. But Robert seemed stone-faced and unmoved. We frankly thought he would be about the last person to get up to talk. Little did we know. When he got to the microphone, he momentarily stared around the church at the 500 or so people and said, "Thanks." Then after a long pause, he continued. "I want to thank anyone here who ever smiled at Colin, touched him, spoke to him, or made him laugh because, you see, he was a good little brother. And he did things for other people. He did things for me. He couldn't mow the lawn for me; he couldn't wash the dishes for me. Well, he could lick `em pretty good!" He went on and on in a humorous and loving tribute to his little brother, and we thought he wasn't reacting! We learned later that he had bought wrist sweatbands for members of his softball team and had Colin's initials, CW, put on them. We all react (and need to react) to tragedy in different ways.
I want all the family members to remember every detail of the funeral, and so I am including the program from the ceremony. Claudia and Donna Sapone put it together, with aid from Fr. Steve. The actual program sheet itself was filled with caricatures of Colin drawn by children.
A Celebration of Colin's Life
Chief Celebrant:
Fr. Steve Swenson
Concelebrants:
Msgr. Robert Adams, Frs. Leon Hooper, Jim Buckley, Dave McCarthy
Instrumental (as people gather):
by Vince Ghiraldi
Preparation for Prayer
Candles placed:
Mike and Diana Richards
Jim and Karen Spann
Frank and Diana Bentancourt
Colin comes in with friends:
Diana and Brad Morisoli
Dan and Will Sapone
Bob McAleer and Janet Risher
Wendy Celeste calls us to prayer through dance and mime
Opening Song:
"Sing of the Lord's Goodness" by Ernest Sands
Greeting:
Fr. Steve Swenson
Sprinkling, Covering of casket, Placing symbols:
family members
Opening Prayer
Liturgy of the Word
Wisdom 3: 1-3,6-9 -- Lynn McAleer
Responsorial:
"Send Us Your Spirit" -- by Dan Schutte
1 John 4: 9-10a, 11-13 -- Donna Sapone
Alleluia (Celtic):
by Fintan O'Carroll and Christopher Walker
movement with children
Gospel:
Matthew 18: 1-5, 10-11 -- Fr. Steve
Intercessions:
Robbie and Jane Fowler
sung response -- "Shepherd Me O God" by Marty Haugen
Liturgy of the Eucharist
Table Set:
"Eye Has Not Seen" by Marty Haugen
Gifts
Eucharistic Prayer:
Children's II
Antiphon:
"Sing We Now" by Dan Schutte
children invited around the table
Holy, Holy:
"Holy, Holy, Holy Lord" by Dan Schutte and Bob Dufford
Amen:
"Amen" by Bob Dufford
Lamb of God:
"Lamb of God" by John Michael Talbot
Communion
Eucharistic Ministers:
Wayne and Janie Wright, Dan Ridolfi and Kathy Brown, John Celeste and Fr. Steve
Communion Song:
"Here I am, Lord" by Dan Schutte
Communion
Meditation:
"Sing of Him" by Bob Dufford; sung by John Durden
Final Blessing
Dan Sapone:
"Welcome to Holland" by Emily Perl
Others:
may go to the microphone to talk about Colin
Recessional:
"City of God" by Dan Schutte
Fr. Steve:
incenses Colin
Balloon people :
Diana Richards, Diana Bentancourt, Peggy Staiano, Wendy Celeste, Karen Spann, Donna Sapone move to the center with the balloons
Fr. Steve invites:
Erin and Robert to gather mementos; Corrigan, Kenon, Ben Sapone, Matt Sapone to fold the pall and to give it to Jim and Claudia
Fr. Steve invites:
pall bearers forward
children to receive their balloons, follow Colin out, and keep their balloons until after the prayer at the cemetery
Procession group:
remain present for the first few verses of the song and then exit
Fr. Steve
Colin
Children
Instrumental until all are out
At the cemetery, Fr. Steve spoke some beautiful words of comfort, and while one of Colin's favorite songs (a song by Raffi) was playing, Claudia let go of her balloon. The rest of the family members did likewise, followed by the others present. As we then looked up into the bright, blue sky, we could see 200 or so colorful messages rising up into the heavens. It was quite a sight and quite a moment. I could hear sobbing all around me, and I heard people saying things like "Goodbye, Colin" and "He's yours, God. Take care of him." The moment was powerful; it was a catharsis.
A woman at the cemetery gave Claudia and me each a big hug and then told us that her daughter, a former student of mine, had not been inside a church for years and had sworn never to step inside a church again. She also had not spoken to her mother in months, but she was at the funeral because of us. She had been so moved by the ceremony that she had come up to her mother at the end, hugged her, and said, "Mom, we have to talk." Little St. Colin was already at work!
Another former student of mine called the day after the funeral and, among many other things, said, "Mr. Willis, I hope you are not offended by this, but I actually had a good time yesterday." Obviously, he got the idea.
A retired teacher told me that he and his wife were so moved by the service that they decided an element was missing from their lives and that, even though they were in their sixties, it was never too late to change. He said they were going to start looking for a church community to fit their needs and to which they could contribute. They were "unchurched" at the time.
My next door neighbor, Dick Jennings, a man nearing retirement, said, "You tell that priest of yours that I have not spent much time in churches, and the few times I have, I get real nervous after about 20 minutes. I looked at my watch near the end of the funeral, and I had been there almost two and a half hours and hadn't realized it. You tell your priest that."
Colin has touched many lives, and he will continue to do so. I talk about him in all my classes (both high school and college), and that leads to great philosophical discussions about how we treat people who are different, about suffering and how to grow from it and not let it destroy us, about the role of friends in our lives, about sacrifice, about love, about "you name it." I have also spoken to various church youth groups (Catholic, Presbyterian, and Lutheran) about Colin, and with them I have talked about how important faith is in dealing with such a loss.
Speaking of faith, on the morning of the funeral, Claudia's faith was being seriously tested. Our belief systems can be shattered (or strengthened) when we encounter suffering. She had been Colin's primary caregiver for seven years. Her life (and, in many ways, identity) had been wrapped up in Colin, and then he was gone. That morning, while she was walking around alone outside, she said, "Colin, let me know you're okay." Just then, a butterfly landed on her shoulder. Call it a miracle if you wish; call it a coincidence if you wish. I don't care. It happened, and it was wonderful. She now sees butterflies everywhere she goes. In fact, about six weeks later, while we were attending a Giants-Dodgers game at Candlestick Park in San Francisco, another butterfly paused in front of her for a time. What was a butterfly doing in the bleachers at Candlestick? Actually, the butterfly is the perfect image for Colin. He was a cute little caterpillar, crawling all over, and now he is a butterfly; butterflies are free. The symbol is most comforting.
I have one sister, Lynn, and one brother, Robert, nine years older than I. He is a psychotherapist and his wife, Pat, is the curator of rare books at the Beinecke Library at Yale. They live in Connecticut. A few hours after Colin's death, I tried to call them but reached an answering machine message that referred me to another psychologist. He then informed me that Robert and Pat had just left for vacation in Canada. By the time we finally tracked them down, it was just before the funeral, and Claudia told them that we had plenty of support from friends and other relatives and that they should not come to the funeral but instead should visit us at Christmas time when we could have a real visit. A week or so later, we sent them a videotaped copy of the funeral, and Robert then sent us the following letter.
Dear Claudia and Jim,
We got back home just before noon yesterday. Among the carton full of unessential mail, we discovered Colin's video. We watched -- or, should I say, tried to -- this morning. If Pat's sinuses were dripping before, she's flooded now.
Thank you for sharing the celebration with us. It's a rare privilege to be part of such love. My heart ached for you all, but it also swelled with gratitude. Colin couldn't have been blessed with more life than he enjoyed with you, his brothers and sister, your dear friends. And how could any community of faith have been more supportive?
Your taking special to mean miraculous, Jim, seems so true. That good-bye to him brought out the best from a race of humans not always marked by compassion, creativity, and selflessness. I don't know as infiltrator isn't better than spy.
I was especially touched by the place kids took throughout. Most often death leaves them out. But they need to say "so long," "thanks," and "remember when" too. And they have a right to know in their hearts that death does not mean abandonment nor "good-bye," "I'll forget." I was thrilled by the balloons they sent aloft, filled with spirit and alive with color: just like Colin. And I suspect he would have nothing to do with a dour God. I could well hear him agree with Zarathustra: "I should only believe in a God that would know how to dance," and "How many things are possible! So learn to laugh beyond yourselves! Lift up your hearts, ye good dancers, high! higher! And do not forget the good laughter.
I was thinking about the gifts that were brought to the altar. So often they lack what his toys are: presents from loved ones, presented to one loved, which make each present to the other, in a present that widens and stretches and never passes on. A moment of mutual touch creates a soul and molds a heart in the birth of an eternal hello. Presence remains simply present. Chronos bows before a greater god, Kairos: the former is empty, if flashing; the latter has fullness and body that have wonderful lasting power. Oh, how I love the reddest of roses!
I spent an afternoon thinking about and talking things over with Colin. He told me about his last night and the hard choice he had to make. He so much wanted to dance! I assured him that you desired that for him too. I also said I'd pass on to you what he decided and why. He didn't want you to think that he was abandoning you either.
Pat and I would like to join you, say on Thursday, December 26, to share a toast of celebration. What a dance is being danced . . .
Love,
Robert
The paragraph about his conversation with Colin was so comforting to Claudia, but I was naturally skeptical. Robert has special powers, and he is able to go deep within himself through meditation and leave the boundaries of time and/or space. Don't ask me how, but he does it. The next time we talked on the phone, Claudia said, "Well, I understand you talked with our boy." I got on and said, "Now, Robert, you know I'm very Aristotelian . . ." He laughed and said, "Do you mean did Colin and I have a conversation the way you and I are having one now? No, but we had a conversation." I have no reason to doubt him.
He also included a poem he had written, inspired by his conversation with Colin. Every time I read this poem, I burst into tears, and yet I also find it very comforting.
Colin's Choice
His room from sleeping blackness bursts alive
In dancing flames as rainbow lights appear.
They flicker, wheel, with jingling laughter dive
Before his breathless eyes. The dancer near
His ear begins to speak: "Hello, I know
Your silent plea for legs to run,
Wide fields to roam. Come, my friends will show
You dances, leaps, vast heavens full of fun."
The child laughed, then sighed: "I cannot leave
My family; they warm my heart." A flame
Of love then jumped in him. "I do believe
They share your life's desire; they wish the same."
The sparkling figure beckoned, "Follow me
Across bright meadows, your playful spirit free!"
His Uncle Bob
August 1991
Dan Sapone pointed out to me shortly after we received Robert's letter that the poem is a Shakespearean sonnet -- 14 lines, iambic pentameter, rhyme scheme of a, b, a, b/c, d, c, d/e, f, e, f/g, g. Not only is the poem inspiring. It is also carefully and lovingly crafted!
Claudia and I spent many hours trying to find the right thing to put on Colin's gravestone. We looked in Oxford's Quotes, Shakespeare, wrote our own tributes, but nothing seemed quite right. Finally, we found the perfect words. And they are the last line and a half of Robert's poem, "Follow me across bright meadows, your playful spirit free!" Those words not only apply to Colin, but they could be his invitation to the rest of us. Near the words, engraved in the stone, is an image of Colin, thick glasses and all, sitting on the lap of Jesus. Overhead is a butterfly. Claudia was the creative force behind those.
This past year has been very difficult for all of us. Every first has been tough -- his first birthday since his death, the first Christmas, the first Easter, this first anniversary. There is the saying that "Time heals all wounds," and I suppose it is true, but in some ways the sense of loss has seemed to increase throughout the year. I guess that's the price of love. The year has been especially tough for Claudia. Taking care of Colin was her occupation, her vocation, for almost seven years, and now he is gone. She has much more free time now, of course, but there is an accompanying guilt that goes with that. She will begin her junior year of college (at age 44) next month (September of 1992) at Cal State, Hayward, and we all hope that it will be a rewarding experience for her.
By the way, when an obituary appears in the newspaper, it often includes the mention of a favorite charity to which the family wishes donations sent. Claudia came up with a marvelous idea for Colin's obituary.
Kaleidoscope is an activity center in Dublin for handicapped children. We have set up a scholarship fund there for poor, handicapped kids who otherwise could not afford to use the center. The principal ($2,016.98 as of 5/26/95) cannot be touched, but the interest is used for such scholarships. Most of the money, by the way, has come in $1 or $2 donations from students of mine. It makes me very happy and very proud that because of Colin, many poor, handicapped children are able to have a good time. That is just another way that he can live on forever.
Colin Willis Scholarship Fund
Kaleidoscope Activity Center
3425 Larksdale Avenue
Dublin, CA 94568
I could go on and on about Colin, but it's time to close. I hope that my writing this encourages Claudia, Erin, Robert, Corrigan, and Kenon to do the same. Because my mother died when I was 16 and had been very sick most of those years, my memories of her are very, very dim, and I have to rely on others (my sister and brother primarily) for their memories and insights. I am not going to let that happen with Colin. I have written this to you, my little bud-bud, and about you -- lest we forget.
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jimwillisca@gmail.com
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