Parenting Calvin
April 14, 1994
by
Carol A. Ranney
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 eight, so I’ve been parenting for ten years now. My children are challenging and rewarding, stressful and fulfilling. They tie me down, consume my spare time, and complicate my vacations. But even on the most difficult of days, I wouldn’t trade my family or the way I’ve 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 as a foster child who was terminally ill at age two and a half. 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 hematologist for the genetic bone marrow deficiency he had been born with. He was afraid of everything, developmentally behind in most areas. He rocked himself to sleep on his hands and knees every night; he cried a great deal and struggled to get out of my arms and into his crib when I attempted to rock him to sleep.
My first goal with Calvin was to get 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 room and used a music box to engage his attention and keep him on my lap. Sometimes when he would rock and rock himself 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, 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.
By the time Calvin was four, he had made enough gains that I enrolled him in a private Christian preschool. 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 special needs. It was one of the best things that ever happened to him. He came to love school and made tremendous strides. We were happy, enjoying the stability and all of Calvin’s new gains.
In April of the year Calvin was five, he began to complain of his “bottom” hurting. At last I discovered a tiny rectal ulcer. I called his doctor, 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 and diagnosed with asthma. I had stayed with him the entire time, and even though it was stressful, he had managed to cope without major setbacks. I didn’t imagine this time being 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 that beeped when it stopped running. It beeped constantly, and he quickly learned that the beep meant that 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.
Several times Calvin was discharged, once with a big send-off party. I always looked at discharge with great trepidation. Nothing had changed. Sure, he was healed. For how long? It never lasted 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. 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.
One early fall morning when I arrived on the unit, I was told that 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 skeptical. 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?”
On December 5th, 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 the Ronald MacDonald House until Calvin was started on the new drug. He started the daily injections December 9th, 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, and I home schooled him for first and second grade. The summer he was nine was one of those golden times you never forget. He and an older, developmentally delayed friend spent the summer playing basketball and running around the yard 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, I again home-schooled Calvin. He seemed happy, 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. However, in October of his third grade year, he suddenly developed intense rages over very minor issues. In the next couple of months, it escalated until it was happening several times a day. He would try to hit and bite me, once kicked his little sister in the face, threw things, slammed, doors, threatened to run away. 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 help him, couldn’t reach 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.
Within a month, Calvin was in Treatment Foster Care, where today, a year later, he is continuing to receive intensive therapy. 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 the year he was in the hospital. 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, but the cost to me in pain has been tremendous. Someone else now makes the decisions, sees his doctors, gives them their opinion of what he needs. 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 doing. 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 could not 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.
1/26/95
Calvin came home on August 20, 1994—five months ago. He is doing well…but I no longer take any day for granted. He is 12 now, growing up quickly. He is once again the boy I knew—the one who loves hugs, loves to dance, loves to laugh. He is still in weekly counseling, still on medication for all his many diagnoses. I am committed to helping him get the support he needs to give him his best chance at a happy, productive adulthood. So many obstacles seem to stand in the way…but looking back, I realize that God always had an answer for every seemingly insurmountable problem. My faith tells me that He will not be less faithful in the future.
July 21, 1996
After nearly two years of living at home and doing very well, welcoming a new baby sister and finishing sixth grade at a day treatment center, Calvin became critically ill while overnight in respite care. He seizured on the way home, and collapsed on the sidewalk outside our door, in the exact place I had taken a picture of him on his first visit here at age two and a half. The paramedics got him inside, and he remained conscious and aware long enough to know he was home, where he always wanted to be. He was in intensive care on a ventilator for a day and a half before he died on June 27, 1996, of acute heart failure at age 13 years, seven months. The cause of the heart failure is yet unknown. A memorial service in his honor and memory united a great many of the people who had known and supported him throughout his life: doctors and nurses, foster parents, birth family and adoptive family, teachers and school bus drivers, classmates and playmates. Black and white, old and young, rich and poor, able and disabled, Protestant, Jewish, and Catholic, we gathered to celebrate the life of a child who had faced nearly insurmountable odds with courage and humor, uniting us in his support and bringing out the best in us by his enthusiasm for life, his unbiased love of people, and his faith that the best still lies ahead.
