Kenon, Colin, and Corrigan in late 1984
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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. Apparen tly, 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!
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