THE GIFT OF OUR DAUGHTER JULIA
It might seem to be an outlandish thing for a father to write personally about his daughter, for it might embarrass her. But my writing will not embarrass her, for she is both handicapped, yet gifted. Actually, she is retarded. She can neither read nor write, but she has the most beautiful smile ever, sparkling eyes, a unique sense of humor, a great kindness, a fantastic memory for faces and directions to places, and last, but not least, a temper too.
We first met our daughter when she was three months old. It was at an adoption agency in Sacramento. We had asked for a sister for our year old boy and this infant girl had the most beautiful smile that was just captivating. Without a second thought, we signed the papers and we took her home with us. The agency representative told us that her mother could well have been a model for the Vogue Magazine. We believed it.
But soon we knew that she had serious problems. When she was six months old, my wife, June, took her to a pediatrician and we learned that she had two holes in her heart. That explained why her hands and feet were so unusually cold. The doctor did not suggest any further tests to offer any prediction as to any probable change for better or worse. Then he told June that our Julia was micro cephalic, which in practical terms meant, retarded. How seriously, he was not able to say.
The adoption agency knew that they had made an error in not having provided us with all the information and they volunteered to take our child back. We had a serious discussion at home. A few tears were shed. While we already knew what our decision would be, June’s 13 year-old-son made the defining statement, “You don’t give a baby away! Mom could have had a baby with a problem too.”
Our Julia had severe digestive problems, but they gradually subsided and the holes in her heart closed. But she always retained that gorgeous smile that would warm your heart, even though you knew that she was suffering more than her facial expressions could tell. She’d had an orthopedic cast on one foot as an infant, to straighten it. At 2 years, she was able to stand and 4 months later, she took her first step. Her development would be slower than we could ever have imagined. We remember her first coherent sentence. She was seven and in my office. An unfinished coke was on my desk. Mom was outside talking to me and she saw Julia, just as she reached for the coke. Julia turned and said, “No Ma, you talk Dad!”
Julia “graduated” from the high school special education class at the age of 21. Her school had been the best, but we were retired and were not capable of the total care of our daughter. We were then fortunate to find the most responsible, caring organization that has now been her home for over fifteen years. She lives with about seven other permanent residents. They receive the best of professional care and each individual is assessed and enabled to do whatever each is capable of doing.
Julia loves animals--all animals but birds, for some reason-- and the bigger the better! Elephants, giraffes and horses are her favorites. Her caregivers make it possible, weather providing, for her to go horseback-riding on a regular basis. It is known that a true therapy exists when handicapped individuals make meaningful connections to animals of various types. And of course, zoos are one of her favorite places to visit.
A beautiful quality shared by the mentally handicapped and those persons approaching death was observed by Elisabeth-Kubler-Ross. That is their transparency. She found that both groups were equally transparent. One needs absolutely no defenses when in their presence, there is no need of intrigues or defenses! That may be one of the reasons we were led into hospice and palliative care volunteer work later. It is a different way of approaching life. In fact it, come to think of it, it is really the only way! And for us, Julia led the way!
Mental handicaps, or retardation, by whatever definition we give it, does not and never will describe the different levels of responses, the ability to remember and that most indefinable quality of all, to have love of others, of music, and of life itself! Our Julia, though she is severely handicapped, somehow is certainly not deprived of the glow in her eyes or the lilt in the voice, or her love of music, even though it is simple music. She also has a deep empathy and a surprising flair for understanding and compassion that would sometimes melt your heart.
Shortly after we had found a permanent group home for Julia, June was returning her after a weekend at our home. She had just before taken me to the hospital with a temporary undiagnosed illness. Just before reaching their destination, Julia turned to June, “You’ll be alone tonight, Mom. Know what! I’ll ask my kids (the other residents) to pray for Dad.”
Then we moved to California, but we would not consider moving our Julia from her beloved home and long time friends in the north-east. It would be better for us to try to journey to see her once a year, as long as possible. Now we talk to her by phone almost every week and we talk about her friends, her church, house parties or the weather. Sometimes she cuts us off short, but she ends it with, “Love you! Bye!”
Had some of our Julia’s mental wires not been crossed during her gestation period, we sometimes just imagine what she might have been. We have been spending a few days with her in the east almost every year. The home celebrates our visit with a Sunday afternoon barbeque. One time, before the afternoon was over, Julia got her old beat-up guitar. She doesn’t play it but holds it up even with some of its strings missing. That doesn’t matter! Julia is a tall, commanding figure so she calls out in a commanding voice, “C’m’on guys, sing Old MacDonald!” Someone took a shot of her in that posture and sent us a photo that we will always treasure.
I cannot begin to describe the gift that our Julia has been to us. She has endured more pain than many of us but is still generally bright and happy. We learned about love and grief and laughter that we would not have learned in any other way. We learned about compassion and patience and humility and they don’t all come in one big package either. It takes a while for us to discover that we too are, like her, all weak and frail. We thank God for his gift to us of our Julia!
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