I can still feel the moment.
Christmas Eve 1975.
The day our carefree life ended and a decade of heartache began.
We married in 1963 and our 12th anniversary was coming up in 4 days.
We had no children the first ten years of our marriage. In 1973 we lost a son nine days after he was born. Daniel Jason never came home from hospital. He was born with a perforated colon and fell deathly ill after his first feeding. He didn’t survive the sepsis.
The doctors shrugged. There was no apparent reason we couldn’t have a healthy child. “Try again” was the advice. We did.
On April 17, 1975 Michael was born. We were so happy. Everything seemed fine.
The months went by. Michael seemed slow to develop. When he was six months old we expressed our concerns to our pediatrician. “Not to worry yet. Let’s see what happens.”
So on Christmas Eve we went to my in-law’s home for dinner. My wife’s two brothers and her sister were there, all in the festive spirit.
My mother in law picked up Michael from his crib to give him a kiss.
Suddenly my wife is loudly calling for me. Our son was in the midst of a gran mal seizure.
I felt a foreboding of what was to come.
Frantic calls to the pediatrician on Christmas Eve and Christmas Day. His pediatrician gave him a medication to control the seizures and arranged an emergency appointment with neurology specialists in Manhattan. Michael was admitted the day after Christmas to Mt. Sinai Hospital for a week’s worth of tests.
Something was seriously wrong. Genetic testing for us. “Are you two related?”. No.
Testing for Globoid Leukodystrophy, also known as Krabbe’s Disease at Albert Einstein Medical Center. We had never heard of the disease.
The doctors spoke of a “degenerative disorder of the nervous system” and how infants with the disease seem perfectly normal at birth. The test for a definitive diagnosis could only be done at Albert Einstein Hospital in the Bronx; the test however was not perfect.
“Tell us what you can do for Michael.”
“Sorry but there is no cure and nothing we can do. Life expectancy for him is probably around two years”. The doctors were as cold as ice and as straight forward as that.
They told how Michael would lose whatever skills he had. Eventually he would be unable to turn over and might be blind and deaf as well. Development of motor skills would cease and seizures would continue. “We might be able to get the seizures under control with medications. You might want to consider institutionalizing the child.”
She glared at them.
“Maybe I’ll just take him home and put him in a dresser drawer!”
We took Mike home with no definitive diagnosis other than a warning that we shouldn’t expect him to live more than two years.
The doctors were right. Michael continued to deteriorate.
Every meal he ever ate we fed him. Luckily he had a good swallow reflex. He would sit strapped in a special chair and we would simply touch his lips with a spoon and he would open his mouth reflexively. He never ate anything but baby food as he never learned to chew.
He would always wear diapers and could not move, turn over or sit up; we carried him from his bed in the morning and back to his bed at night. She fed him breakfast and lunch while I fed him dinner and sat with him in a rocker while watching TV.
One of the diaper companies was test marketing a new adult diaper. The company got in touch with us as Michael grew older and offered the new diapers delivered free if we would become test marketing subjects and let the company know what we thought of the product. Free diapers as he got older and larger. He had outgrown his pampers.
My wife gave up any idea of ever returning to work. She was her son’s mother. He was always clean, well dressed, hair combed and well fed. She would sit outside with him in his special wheelchair on glorious Spring and Summer days wondering what was going to become of him.
He never spoke a word. Never said “mommy”. He never looked at us. He never moved on his own from wherever he was placed. He was carried everywhere.
He was included in all of the family adventures and his aunts and uncles loved him, accepted him as he was and forgot about the prognosis although there was nothing but worry as to what was going to happen to him when we were gone.
She cared for him well and Michael didn’t die.
He lived to be almost ten years old and one bright, warm February morning in 1985 he woke up and died in my arms. I know to this day it was the only time I ever saw him smile.
After his funeral we gave away his clothes and wheelchair anonymously through his school to a single mother in a similar situation. I still have her note which the school passed to us.
My wife and I loved our son Michael and we cried many a tear when he died. I know that everyone who came to his funeral thought that his passing was a blessing – both for him and for us, although we did not think so at the time.
Was he a “blessing” to us? Its easier to say yes if you are not the parents. In a sense that he changed our lives and made us more human and humane, then the answer is yes. He certainly made my daughters much more sensitive to the needs of others. For my wife and I it was a lifetime of heartache.
People measure their lives in different ways. Birthdays are the most obvious of course but some count Summers at the shore, Septembers, first snow or their 5th golden retriever.
I guess I measure my life in Christmases.
Christmas as a child with grandma and my parents. Two Christmases in Eritrea. Traveling home from London through Pittsburgh (it was the only flight) and making it home on Christmas Eve. . Happily traveling to the Cairo airport, traveling home for Christmas. Christmas with my wife. Christmas with my wife and 3 children. Christmas with my wife and 2 children. Christmas without my wife.
Christmas before Michael. Christmas after Michael.
Daughters – Christmas 1981