He stripped the nursery of everything.
He packed it all up and donated it to the Salvation Army; bassinet, toys, clothes, towels, bottle sterilizer, bottles, blankets, the little yellow wash tub, everything gathered for the baby who never came home was carted away.
When he was finished there was only a sunny yellow room with new carpet and he was crying.
He went back to work. They were staying with her folks and the commute was a lot easier from Staten Island. He rode the ferry in the morning with his cup of coffee just like he and she used to do when they were first married, ten years ago now.
She came around slowly. The weeks went by and she got back her smile, even a laugh once in a while. Spending time with her family was good for her and seeing her return to a semblance of normal raised his spirits as well.
After a couple of weeks they drove home to Lincroft, picked up the dog from the kennel and entered their quiet, empty dream house. On the doorstep was a basket of withered flowers sent by the neighbors, “Congratulations on the new arrival!”
He threw the flowers in the trash. He would have to tell the neighbors.
She turned to him with sad eyes and they stood holding each other.
The house went up for sale and was sold in a weekend. They went to Staten Island and bought a new high ranch in Richmondtown, one of the island’s tonier neighborhoods. One year after moving into their dream house, they moved out; hopefully to start a new chapter in their lives.
Life returned to good and she returned to outwardly happy. He enjoyed the shorter trip to work and both were in familiar surroundings. His boss sent him to Rome and Venice on a business trip. Everything was going well again. And then she said it casually over coffee.
“Honey, can we have another baby?”
"Sweetie, it took us ten years to have the first one. Who knows how long it will take to have another?"
"Well the doctor said that what happened to Danny was unfortunate but there seems to be no reason we can't try again. This time we are going to do it scientifically!".
She took out her thermometer and ovulation chart. "You husband, are going to feel so used!"
And so each morning she took her temperature, plotted the chart and every three weeks or so would announce "Don't go anywhere! Today is the day!"
It took time, but eventually she was pregnant again. She wanted to name this one after him if it was a boy. He nixed that idea. They settled on Michael Carmine, using her dad’s name as a middle name. It was still Marie if it was a girl.
The joy started up again with everyone except him – he couldn’t shake his dread. They bought nothing to prepare for a coming baby. He promised he would buy everything needed while she was in hospital after delivery. He wasn’t going to celebrate until it was all over and the baby was home safely. Shopping too early was a definite jinx in his mind.
As she approached her delivery date her doctor decided on induced labor, so on April 17, 1975, less than two years after Danny’s birth, she nervously checked into Richmond Hospital in Prince’s Bay. As usual, he was consigned to the men’s lounge to watch TV with the other prospective dads.
A number of hours later her doctor came in. He searched his face for clues.
“You have a fine healthy son.”
Now, he felt like he could celebrate. After all, lightning never strikes twice in the same place, does it?
They brought Michael home, wrapped in a baby blanket, to his new nursery. He had shopped for everything. Gifts flowed in with best wishes from family and friends. A joyous christening two months later at the little white church in Richmondtown.
He took her with him on a business trip to Mexico City while her mother cared for Michael for a few days, staying at the city’s finest hotel. A client discovered they recently had a son and delivered a gift at the airport before the trip home.
Life was good. Except that Michael was “slow to develop.” The pediatrician began keeping a closer eye on how he was doing. Nothing to worry about. Yet.
It was Christmas Eve at her parent’s house. She and her mom were with Michael in the kitchen. Suddenly he heard a scream and his name.
Michael had his first gran mal seizure.
The pediatrician recommended the two finest neurologists he knew. They practiced at Mount Sinai in Manhattan. The day after Christmas they checked Michael in for a week’s worth of evaluation.
He was worried and now she was, too. The dark clouds were directly over their heads.
A few days later came the name of a disease they had never heard before: Globoid cell leukodystrophy. 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; but the test 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 straightforward as that.
They described 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!
She began her status as full time care giver. She wept every day for months as her son’s ability to sit up, 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 as he began to cry, repeating over and over where are my boys?
“You must be strong now. You can not be like this in front of the women. My daughter needs you now more than ever…”
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.
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.
Meanwhile, the corporate 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. 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 that would free them from 24 hour care giving. It was time to change jobs.
They were in North Carolina on July 4, 1976. 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 again.
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 throughly 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.
The follow up 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. But not for her. Not this time. Not now. 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.
Again she was carrying a girl. Everything seemed okay 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’ll have to go through lots of counseling. Are you sure?”
She was glad she had a choice. And she made her choice. It was always hers to make. Whatever would come, they would face it together.
It was the evening of June 3rd, 1979 when she had her first pains. It was her 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 not!”
And so she stayed still on the couch as the pains increased in intensity and frequency.
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.
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 go on to 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 that as the girls grew into self-reliant young women, 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 boys.
But he had everything he needed