The doctors spoke to them about 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!”
They took him home and she began her status as full time care giver. She wept every day for months as her son’s ability to move, turn over, take her finger, look at her, hear her, disappeared.
He sat with his father-in-law after returning from the hospital, a drink in hand. Her dad held him in an embrace and he began to cry, repeating over and over “Where are my sons?”
“You must be strong now. You can not be like this in front of the women. My daughter needs you now more than ever and so does your son”.
The doctors were right. Michael continued to deteriorate.
Every meal he ever ate they fed him. Luckily he had a good swallow reflex. He would sit strapped in a special chair and they 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; they carried him from his bed in the morning and back to his bed at night. She fed him breakfast and lunch while he fed him dinner and sat with him on his lap in a rocker while watching TV.
One of the diaper companies was test marketing a new adult diaper. The company got in touch with them as Michael grew older and offered the new diapers delivered free if they would become test marketing subjects and let the company know what they thought of the product. Free diapers as he got older and larger. He had outgrown his pampers.
She 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.
They cared for him well and Michael didn’t die.
Meanwhile his corporate work life was creating obstacles. He was simply unwilling to travel overseas as much as the company wanted nor was he able to accept a plum assignment to Rome which had been offered. The pressure was on him to make as much money as possible so that they could continue to live on one income while at the same time trying to find services for Michael which would free them from 24 hour care giving. It was time to change jobs.
They were in North Carolina on July 4, 1976, the nation’s 200th birthday. The country was celebrating everywhere but in Charlotte. It was pouring rain putting a big damper on local festivities. Together they watched events around the nation on TV. They had each other and their silent son.
Her parents retired and moved to Florida and her sister would follow a few years later. A local agency for the disabled was picking up Michael each weekday and caring for him until late afternoon giving her some free time for herself. It was a good arrangement.
But she seemed exhausted. And with good reason. She was pregnant.
After no kids for nine plus years came three pregnancies in four years. She had been advised for medical reasons not to take the pill, which was still relatively new. They tried to be careful. Seems now however that they couldn’t pass each other in a hall without a pregnancy.
She was worried sick as was he. They were two time losers when it came to having healthy children. They made an appointment with an obstetrician who came highly recommended.
He was a thoroughly Southern man, a caring gentle man, the son of a doctor, born and raised in Charlotte. He listened carefully to their history while patients backed up in his office. He didn’t care. He was giving them all the time and attention he knew they needed.
“We will do all of the tests available. I promise you if there is anything even slightly wrong I will tell you honestly. And if everything is OK I will tell you that as well. I promise you my best efforts.”
The followup appointments included a battery of tests and evaluations.
“You are carrying a girl. She seems perfectly healthy”.
They spoke further about Michael and globoid cell leukodystrophy.
“I’ve checked with your New York neurologists and Mount Sinai – the test for Krabbe’s Disease, the more common name of the disease, was inconclusive. I don’t think he has Krabbe’s.”
He handed them a copy of a British medical study and a detailed report from the Center for Disease Control in Atlanta. “I think it is just as possible this is the cause.”
“The DPT vaccine shots?!”.
“There have been a statistically significant number of cases of serious brain damage associated with the Diphtheria-Pertussis-Tetanus vaccine. Very few in actual numbers but enough to set off alarm bells. It’s the pertussis part, the whooping cough vaccine, which may be the problem, The Center for Disease Control would like you to provide Michael’s records for further study. I’ll just bet he didn’t have any problems until after the first shot.” They agreed to send Michael’s records to Atlanta.
She took her husband’s hand and squeezed it as she began to cry.
“I’m telling you this because I don’t want you to worry about your little girl inheriting Krabbe’s.”
They went home and discussed it. Should they go forward? Choice was now an option.
They were two time losers when it came to having a healthy baby. No one in the family knew she was pregnant. They had perfectly good reasons to terminate this pregnancy.
But this was not for her. Not this time. Not now. Her choice was to go forward. They put their trust in their new Southern doctor.
They waited until she was seven months gone before telling family and friends. They were not surprised when no one seemed exactly thrilled this time around. Everyone was worried. What if they had another disabled child?
On the coldest day in a dozen years in Charlotte, after a dusting of snow and the thermometer in single digits, she went into labor. He rushed home from the office, picking up a box of maxi-pads per her instructions. They drove Michael to the day care providers, all of whom came out to the car to cheer and wish her luck; then they headed for Charlotte Presbyterian Hospital. On January 14 the little girl came into the world.
Finally Marie. Daddy would dance with her around the family room to Hall and Oates singing “Rich Girl.”
And it would happen again. Again without plan. Another pregnancy.
This time she seriously thought about terminating; they talked it over and inevitably came her question to him: “What do you want to do?”
“It doesn’t matter what I want. You are the one having the baby.”
“It does matter. We ‘ve had three children and only one normal one. Maybe we shouldn’t press our luck”.
“You know I will love you no matter what you decide.”
Again she was carrying a girl. Everything seemed ok but they were still sick with worry. They made an appointment to terminate.
When he came home early afternoon to take her to her appointment she embraced him and said she had changed her mind.
“Are you sure? If we cancel and then try to make another appointment you will have to go through lots of counseling. Are you sure?”
“I’m sure; but I’m having a tubal ligation after this one!”
She was glad she had a choice. And she made her choice. It was always hers to make. What ever would come, they would face it together.
It was the afternoon of June 3rd, 1979 when she had her first pains. It was her 34th birthday and would have been Danny’s birthday. He would have been six years old that day.
“I’m not having this baby today! I’m just not!!”
“You’ll have it when you have it!”
“No I won’t! Not today!”.
And so she stayed still on the couch as the pains increased in intensity and frequency.
“Please please let me take you to the hospital!! I’ll need a derrick to get you out to the car if you wait much longer!!!!”
Finally she agreed it was time and when they got to the hospital she was rushed straight to delivery. He went to the men’s lounge as usual.
Within 45 minutes came the announcement over a speaker : “You have a daughter!” The guys in the waiting room thought it unfair. “Hey, you just got here!”
It was June 4th when Pam came into the world. Her mother simply would not have her new daughter on June 3rd.
For a number of years they had three children in diapers but Marie and Pam grew out of them and life became easier. Michael attended a school for the profoundly disabled each day.
He never spoke a word. Never said “mommy”. He never looked at them. 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 sisters, 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 they were gone.
And one beautiful morning in February 1985 when they least expected it, he simply woke up and died in his father’s arms. He was almost ten years old.
His father swore it was the first time Michael ever smiled at him.
He was fifty years old when the bank he was with was sold and he lost his senior job. Through his networking efforts his old secretary at the “don’t leave home without it” company got hold of his resume and within days he was in New York for an interview. The old-timers still remembered him.
The job offer as a Managing Director came quickly and they had to decide where to live in the metropolitan area. They decided to return to Middletown / Lincroft, scene of their first “dream” house all those years before.
While he was looking for a house he took time to visit the grave of his first born, Daniel Jason. It was raining slightly as he sat under the tree, near the stone. It had been twenty years and here he was – living in the same town and working for the same company. What had been accomplished? His tears fell with the rain.
Little could he know that his daughters would love this town, would graduate from fine high schools and attend Rutgers College and Monmouth University, grow up to be strong, compassionate women and that their mother would carry all the pride in them of a woman who never went to college.
He couldn’t know that the DPT vaccine of the 1970s would be changed in the mid-90s because of the number of Michaels in the U.S and Britain although no one ever admitted the connection.
And he couldn’t know, as the girls grew into self-reliant young women, that he and she would rediscover travel without the kids, have fun again, go to casinos and Broadway shows and that the coming decade would be the happiest and most rewarding of his entire life.
No. He had no sons.
But he had everything he needed.
Daughters – circa 1981
An excerpt from “Toritto’s Blog – a Memoir of a Life in Posts”
available in soft cover and e-book