Part One: My Son, Colin
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, shortly after birth
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.
Claudia & Jim in 1986
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.
The Willis Kids
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.
Kenon, Colin, & Corrigan in 1984
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.
Colin, at about age two
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.
Colin & his favorite singer, his dad!
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!