I am a nurse, the single adoptive parent of five special-needs children ranging in age
from two to 18. I adopted my first son at age 8, so I've been parenting for ten years now.
My children are challenging, rewarding, stressful, and fulfilling. They tie me down, consume
my spare time, and complicate my vacations. But no international vacation I have ever
taken could compare to last year's excursion, a road trip down the west coast to Disneyland
and every point in between with four children. Even on the most difficult of days, I would not
trade my family or the way I have chosen to spend my life for anything in the world.
I could probably write a book about each one of my children, but the one I would like to tell you about is my son Calvin, who is now 11 years old. He came to me in 1984 as a foster child who was thought to be terminally ill at age 2 1/2. He was a very small African-American boy who had spent a great deal of his short life either in the hospital or being examined and treated by his hematoloist for the genetic bone marrow deficiency he had been born with. He was afraid of everything, developmentally behind in most areas. He did not talk or feed himself much; he rocked himself to sleep on his hands and knees every night--most of some nights. He cried a great deal of the time and struggled to get out of my arms and into his crib when I attempted to rock him to sleep at night.
My first intervention with Calvin was to persuade him to bond to me as his parent--I assumed from the beginning that he would be with me for the duration of his life. I took the rocking chair out of his bedroom, out of sight of his crib, and used a music box to engage his attention and keep him on my lap. Sometimes at night, when he would rock and rock for hours, I would take him into my bed to sleep. I can remember looking at his sleeping profile in the semi-darkness as he lay next to me, and wondering what the future held for us. It was a thrill when he finally started calling me "Mama" and coming to me for hugs with outstretched arms. In the difficult years to come, his bond to me and to his brothers and sisters would be cited by his mental health workers as his greatest asset in overcoming his problems.
By the time Calvin was three, he had made enough gains that I enrolled him in a private Christian preschool near us. He was blessed to have a teacher who, besides being very skilled in reaching him and understanding his problems, was an adoptee herself and very sensitive to his life situation. Even though he was not completely potty trained, his speech was very difficult to understand, and he was still terrified of many things, the school was willing to have him and adapt to his exceptional needs. It was one of the best things that ever happened to him. He came to love school, and made tremendous gains. The second year, as a four year old, he repeated three year old preschool with the same teacher, and by the end of the year had virtually caught up with the class.
The following year he began four year old preschool, moving along with his class from the year before, and was able to keep up nicely. By this time I had begun to pursue his adoption, even though at the outset he had been termed "unadoptable." Life was satisfying. We were happy, enjoying the stability and all Calvin's new gains.
In April 1988, the year Calvin was five, he began to complain of his "bottom" hurting. After several days of repeated checking, I discovered a tiny rectal ulcer. I called his doctor immediately, put the other children in respite care, and he was admitted to the hospital the same evening. Earlier that month he had also been admitted for several days and was diagnosed with asthma. I had stayed with him for the entire time, and even though it was stressful, he had managed to cope without major setbacks. I didn't imagine this time to be much different.
How wrong I was. The rest of the year was a nightmare. Calvin was put on intravenous antibiotics, and the ulcer healed. The antibiotics were stopped, and it immediately developed again. More IVs. More antibiotics. He was on an IV pump which beeped when the IV stopped running. It beeped constantly, and he learned quickly that the beep meant he would go to the treatment room, be held down on the exam table, and the nurses would look for another vein. All the gains, his trust in the world, his happy spirit, were gone. He was subjected to constant exams, being waked up in the predawn hours for blood draws and temperatures, and always the IVs. I could not get the staff to enforce regular routines such as bedtime and naps. He had aways needed a great deal of sleep, and finally he was so sleep-deprived that he seemed to do nothing but scream. I ran up a huge debt, borrowing money for respite care for my other children. I knew I was going to lose this child, and I was going to be with him for whatever time we had left. Besides, if I was there, I could enforce a reasonable routine, and prevent multiple daily exams by people who should have gotten together for one combined "look."
Several times, Calvin was discharged, once with a big send-off party. I alway looked at discharge with great trepidation. Nothing had changed. Sure, he was healed. For how long? It never lasted for more than a few days. Once, he was discharged on a Friday. We went to the zoo on Saturday, and by Saturday night, he was already complaining of pain. He'd gotten a toy train at the zoo that was supposed to smoke, but it didn't work. Sunday we went to church, and someone stood up and said how wonderful it was to have Calvin back. I couldn't even speak. I just burst into tears, knowing Monday was the latest I could put off telling him I had to have him readmitted. Monday we were back at the hospital again. I pulled him up to the unit in a wagon, and as we went through the door, his toy engine began tooting and smoking. It made the unbearable a little more bearable.
It made me know God was with us, even at the worst times.
Finally, they could find no more veins. Every IV start meant multiple pokes. A friend told me I should insist on a central line, surgically inserted into his chest. The first one didn't work, and after all the promises of "no more pokes," there was another week of it. Finally a line that actually worked was in. That helped a lot. But antibiotics no longer helped enough to keep the ulcer healed. A number of trial medicines were used, none of which was effective. Calvin was placed on the list for a bone marrow transplant, but even though we knew his birth family, none of them were a match. Because he is African-American, chances of a non-related donor were virtually non-existent. He was then put on daily pheresis blood transfusions, giving his body donated white blood cells to fight the infection. But how long can a child go on, using daily blood donors? The question never left my mind. One afternoon I walked through the little cemetery on a hill near us, thinking,
"I can see this from the kitchen window...."
Not long after that, one early fall morning when I arrived on the unit, I was told the doctor wanted to see me in his office. I was shaking as I went in. I knew it was over. Instead, the doctor told me he had located an investigational treatment program in New York City for children with Calvin's specific bone marrow disorder. I was sceptical. I remember the doctor telling me that it had been effective in 10 out of 11 children.
My only reply was, "What about the 11th?"
Nevertheless, I was finally able to take Calvin out on a pass and gather at the courthouse with my friends and family to watch the judge sign the adoption decree. During the long struggle to finalize, the attorney had asked me, "Why are you doing this?" I couldn't imagine anyone not doing it. "Even if he only lives for one day past it," I told him, "I want him to be mine."
That was October 13, 1988.
On December 5, I went by the hospital at 5AM, signed the discharge papers, and we left for the airport to fly to New York, carrying with us IV antibiotics to give several times daily at Ronald MacDonald House until Calvin was started on the new drug. He started the daily injections December 9, and by Christmas he had a normal white blood cell count for the first time in his life. "You got white cells in your socks for Christmas," I told him, "and in your shirt and everywhere else!" We skipped the party they held for the children on Christmas Eve and went to church. Miracles did happen. I'd never ask for another one. I thought.
Calvin finished preschool and kindergarten at the private school, but had some difficulty sitting still and finishing his work. I home-schooled him for first and second grades, partly to make sure he got adequate basic skills and partly to teach him African American history. Even though he had tested very low, he kept up, at or above grade-level. We both enjoyed home schooling and the freedom it gave us to do outside activities. I had a busy family of adoptive and foster children, a lot of friends and outside interests, and life was good. The summer Calvin was nine was one of those golden times you never forget. He and another older, developmentally disabled boy in our apartment complex were great friends, and spent the summer playing basketball and running around the apartment complex with a two year old boy who lived upstairs. By the next summer, the older boy was in a residential placement, the toddler had died in an accident, and Calvin was in foster care.
The summer of childhood was over so fast.
In the fall at the beginning of third grade, I again home schooled Calvin, and as I had done the year before, sent him to an afternoon of private school with his former classmates. He seemed happy with the arrangement, and was doing well academically. But overnight, it all changed. The previous year, he had been diagnosed with Tourette Syndrome, which explained his long history of motor tics. Life had been so stressful for him that everyone thought the tics were just stress. When he was treated for TS, the tics disappeared, along with "bad language" and a lot of his distractability and impulsiveness. However, in October of his third grade year, he suddenly developed intense rages over very minor issues. At first this was happening weekly or less, but in the next couple months, it escalated until it happened several times a day. His outbursts were totally unpredictable, and totally uncontrollable. He would try to hit and bite me, once kicked his little sister in the face, threw things, screamed, slammed doors, threatened to run away. I had to be on 24 hour alert for fear he would harm one of the other children. He became self-injurious, then began talking to "Boss" and asking "him" for advice.
One morning I went in his room to ask him a question, and he shouted over his shoulder, "What shall I do with her?" and attacked me with a music stand. I was finally beaten. I couldn't reach him, couldn't help him, could no longer cope. I took him to an emergency room and arranged a psychiatric admission. It was one of the hardest things I have ever done. He was in and out of four admissions; on one admission he developed a horrible case of chicken pox and was sent home, too sick to do anything but lie in bed. All he could say was, "I'm so glad to be home. I'm just so glad to be home." But once he was better, his difficulties started anew. During the following admission, he became ill with what seemed like a virus. I picked him up and took him to be seen by his regular doctor. He was admitted to be treated for acute asthma. I went home and got to bed about midnight. At 2 AM the hospital called. Calvin was being transferred to Intensive Care because he couldn't breathe. I got up, called a friend to stay with the other children, and went directly to the ICU. He had a high fever and they were trying to get an IV in. I held his head and shoulders in my arms and an oxygen mask over his face. Suddenly his eyes widened, glazed, and he stopped breathing. Fortunately, all the emergency supplies were at hand and he was immediately placed on a ventilator. I spent two days at his bedside, stroking, kissing, and praying for this little boy whom I loved so much. A few days later he was home again...but it was only a brief respite before his former problems again became apparent. A range of different medications were tried--they would work for a few weeks, but then things would again begin to deteriorate.
During one of the rare good times, in March of the year he was 10, I came up with a scheme for the vacation of a lifetime. We would ask our friend, who had transported the kids for years in a wheelchair-accessible cab, to take my oldest son Jason in his power wheelchair, Calvin, his four year old sister Mandy, our seven year old former foster son Juan, who had been with us on kidney dialysis for several years prior to a kidney transplant, and me, on a road trip down the west coast, from Portland to San Diego. We would see the redwoods, San Francisco, Disneyland, Knott's Berry Farm, the San Diego Zoo, Sea World, and everything in between. My friends thought we were out of our minds. We had a wonderful time! It was like we'd briefly left "real life" behind for, as Disney puts it, Fantasyland.
But fantasyland was over all too soon. By the time we were approaching home at the end of our vacation, Calvin was struggling with his issues again and asking to be readmitted to the hospital. I felt beaten down, defeated. I had no more answers, no more reserve. My other children also deserved a safe, secure life. But I was committed to my son as well.
Within a month Calvin was in Treatment Foster Care, where today, a year later, he is continuing to receive intensive therapy, monitoring of his medications, and a highly structured behavioral program in the TFC home. He visits at home weekly and will be trying an overnight visit before too much longer. It sounds ideal. It is the hardest thing I have ever done. I thought nothing could be worse than what we endured in 1988. This is worse. In many ways it would be easier to lose a child in death than to lose his presence in the home, the child I once had, whom I nurtured, loved, protected, and would have given my life for. He is doing better, I think, and is happy where he is, but the cost to me in pain has been tremendous. Someone else now makes the decisions, not asking me and often not even telling me. Someone else sees his doctors, gives them an opinion of what he needs and how he is doing. He has been exposed to things I wish he hadn't been, and we have lost a lot of the closeness we once shared, having been through so much together. Now, much of what he endures, he goes through with someone else. I don't know what he is thinking, how he is feeling. He is not an articulate boy, and I know that most of what is lost to me will never be regained. I remind myself often of what I believe to be true, that the pain I bear, I bear for him. The help he needs I cannot give, and by getting that help now, in the years ahead he will be a stronger, healthier man, better able to lead a satisfying, fulfilling life. I believe it to be true, but it doesn't take the pain away.
I have four children at home now, and they are all doing well. I fight the constant feeling that in some way, what has happened to Calvin is my fault. I don't believe it, but when a person seems no longer to be essential in the life of their child, the feeling creeps in. If I had known what was ahead, those dim early mornings when I watched him asleep in the bed beside me, I don't know what I would have done. I'm glad I didn't know. We had so many good years, so many good times. Maybe we have a lot of good years ahead. Whatever happens, I feel that parenting Calvin was my destiny, maybe the only really important thing that I'll do in my lifetime. I think people are born for some purpose, maybe for only one thing that they will accomplish in life, but the one thing that will give that life infinite, lasting meaning.
For me, that one thing has been parenting Calvin.
Not the end...
