The celebration of Carson Grey McCord's too-short life was the day before Easter. The preacher said it was appropriate.
The chapel in the Kuhner Funeral Home in York was packed. Every seat was occupied. Some sat on the wide windowsills of the historic stone building. Others stood in the back, standing room going back to the building's main entrance.
A slide show of photos of Carson played on several screens throughout the chapel – Carson wearing a Santa hat, Carson with his twin niece and nephew, Carson wearing a blue robe and mortarboard when he graduated from high school at 21, Carson holding a blue Stratocaster guitar, Carson smiling as his mother gently kissed his forehead.
Speaker after speaker – his grandmother, his sister, his stepfather, a family friend, one of the many nurses who cared for him, his mother – went to the podium and told those gathered what Carson's life meant to them.
He was a teacher.
In his short time on this planet, they all said, he taught them patience. He taught them to appreciate the small moments in life – the touch of a loved one, the feeling of a warm summer breeze on your cheek, the sound of a familiar voice. He taught them about compassion. He taught them how to find strength they didn't realize they possessed. He taught them about love and its power to heal.
And he did it without ever having uttered a word in his life.
Carson was born at 9:19 a.m. on March 23, 1994, son of Kimberly Acworth and her then-fiancé Vince McCord. His sister, Alex, seven years his senior, thought he looked like an alien, but then, all newborns look like aliens. He weighed eight pounds and 14 ounces and was 21 and a half inches long. He had long, delicate fingers and a full head of dark hair.
He was perfect.
Eleven weeks later, everything changed.
"Something is wrong."
It was June 10, 1994.
Kimberly was working. She is a hair stylist and has her own salon, and Carson's father, a government auditor, was working at home. He was to pick up Carson at day care. Kimberly and Alex planned to do some shopping after Kimberly was done with work that Friday. She tried to call Vince before leaving the salon, but the line was busy on her three attempts. It seemed unusual, she would write in a narrative of the night's events.
When she returned to her Dover Township home later that evening, Vince told her that Carson had fallen off the couch. She wondered how that could have happened and rushed to his nursery to check on her son, her heart beating fast.
Carson was lying in his crib. His breathing seemed off – a mother knows her child's breathing – and she picked him up. He "felt like a sack of potatoes, dead weight," she wrote later. She squeezed his hand. There was no response. His breathing became more irregular. His color faded to gray.
"Something is wrong," she told Vince.
Vince repeated that Carson had fallen off the couch.
She held him to her chest and patted his bottom. He seized up, his back bending backwards, forming his body into the shape of a C. He seemed to be in pain, agonizing pain.
Kimberly called his pediatrician and told him that Carson had fallen off the couch and had hurt himself. The doctor told her that thousands of babies fall off couches, and they're fine. She told him he didn't understand. There was something very wrong with Carson. The doctor agreed to meet Kimberly and Vince at his office in York Township.
Carson's condition seemed to worsen during the drive. Alex became upset, asking, "Is Carson going to die?" Alex cried.
Kimberly told Vince to go straight to York Hospital's emergency room instead. When the nurse tried to put an oxygen mask over Carson's nose and mouth, he let out a shrill scream.
Kimberly was terrified. She didn't understand what was happening.
Doctors and nurses swarmed Kimberly and Vince, asking whether Carson had been abused. Kimberly had no reason to believe that was the case and said, "Absolutely not."
The doctors ordered a CAT scan, and it showed extensive damage to Carson's brain – damage that they concluded could not possibly have been caused by falling off a couch. It had to have been something much more violent. It had to have been caused by someone shaking Carson.
Kimberly had never heard of shaken baby syndrome. She would learn.
Carson was taken by ambulance to the Hershey Medical Center.
Kimberly held Carson the entire trip.
He suffered seizures during the trip. Kimberly asked God to take him if that was His will. And she prayed for a miracle.
Carson was in Hershey Medical Center's pediatric intensive care unit for weeks. Doctors induced a coma, hoping that the swelling in his brain would subside. It appeared that the damage had been done. The doctors said the first 72 hours were critical. Even if Carson survived, they said, it was unlikely that he would make it past 4 years old. It was just as unlikely that he would ever progress past the development of a newborn. Kimberly wondered how this could happen. The doctor demonstrated using an Elmo doll, grasping it by the chest and shaking it violently. The result was like putting an egg in a jar and shaking it. That's what happened to Carson's brain.
Kimberly remained at his bedside, praying and trying to comfort her son. She wept.
The Northern York County Regional Police department began investigating. Kimberly recalled she and Vince were asked to take a lie detector test. They agreed, initially. Later, on the advice of his lawyer, Vince declined to take the test, Kimberly recalled.
Vince asked Kimberly to talk to his lawyer, who asked her, "Do you think Vince did this?" Kimberly didn't say anything, but the lawyer could tell she had her doubts.
She was done talking to his lawyer.
And she was done with Vince.
On Sept. 28, 1994, Vince was charged with a variety of offenses, the allegation being that he had shaken his son so violently that he caused severe damage to his brain. In the criminal complaint, Shaffer wrote that Carson was functioning at the level of a four-week-old.
Vince denied the charges and has always maintained that he did not hurt Carson.
The trial, in September 1995, ended in a hung jury.
Before the retrial – and after the state Supreme Court ruled that Vince couldn't be retried on two of the charges against him, aggravated assault and recklessly endangering another – the defense and prosecution reached a plea deal. Vince was placed in the Accelerated Rehabilitative Disposition program for first-time offenders, pleading guilty to endangering the welfare of a child, and ordered to pay child support and medical bills and maintain health insurance for Carson. He was placed on probation for three years and ordered to remain employed.
There were some who believed that Vince got off easy, that probation and a clean slate once he completed the program wasn't severe enough.
Kimberly, though, not only agreed to the deal, she supported it. She wanted to make sure that Carson was provided for, and throwing his father in jail wouldn't accomplish that. This way, she said, every time he looked at his paycheck and saw that half of it was going to care for his son, he would be reminded of what he did.
She invited him, on several occasions, to visit his son, she said. He always declined.
Messages left for Vince, now living out of state, went unreturned.
"I'm good. I'm good. I got this. We'll figure it out."
There was no manual, no class you could take, no YouTube videos you could look up, nothing. Kimberly understood her son had suffered extensive brain damage. She did not understand what it would take to care for Carson.
She had to create the manual.
Caring for Carson was a 24-hour-a-day job. He was nearly blind. He was partially deaf. He could not speak and never would. He could not walk. He could not move. He could not swallow; feeding him was an ordeal. He would projectile vomit if not fed correctly. His diapers had to be changed. He had to be moved regularly to prevent bedsores.
The first two years of his life, he cried 23 hours a day. He would sleep just 10 minutes at a time, lying on his mother's chest. Kimberly would put him in the car and drive around in the middle of the night just so others in her household could get some sleep.
Kimberly had to learn how to cook – and puree – special meals so Carson's nutritional needs were met.
Initially, it was just Kimberly and her mother, who quit her job to help her daughter. They would sleep in shifts. Sometimes, Carson would stay at Nana's house so Kimberly could get more than two hours of sleep before going to work.
Among the first to join Carson's team was his aunt, Ann Sprenkle. Ann was in Kimberly's shop one day. She knew Ann worked as a nurse in a burn unit and mentioned the difficulty she was having finding people to care for Carson. Ann told her she would be willing to help out. It turned into a full-time job that would last for more than 22 years.
Carson's sister, Alex, was part of the team. She and her friends would play with Carson, include him in their tea parties when they were young, and watch movies with him – he liked action movies with lots of explosions and other loud noises – when they got older. Kimberly recalled coming home one evening after Alex and her friends watched Carson and finding his toenails painted cobalt blue.
There were also professional caretakers, a team of them, all selected by Kimberly. She wrote a lengthy job description for those who applied for the jobs, the most important part being that any person caring for Carson had to be positive and had to view the task as more than just a job.
The care had to be delivered with love, Kimberly said.
It was expensive. There were weeks when Kimberly would sign her paycheck over to the nurses.
A testament to the quality of his care: In his 23 years, Kimberly said, he never had a diaper rash or a bedsore.
It is also a testament to his care that he exceeded the doctors' expectations as to how long he would live by nearly two decades.
Kimberly never really thought about that. She just took one day at a time, living every day as if it were Carson's last.
Every day Carson lived, she said, was a victory. Every day was a good day.
When Carson was at his Nana's and would cry through the night, his grandfather would hold him and sing to him, hoping that would calm him. His PapPap joked that he wasn't sure whether he was crying "because he was hungry or because of my singing."
Carson loved loud noises. He loved when he and his big sister would watch loud action movies. The explosions soothed him. He also loved fireworks. He loved bumpy rides. His mother would take him for drives and try to hit potholes, speed bumps, drainage grates and any other bump in the road. It made him laugh.
He couldn't speak, but after a while, Kimberly said she could tell what he was trying to say by his expression or his touch. A mother, she said, just knows. He knew his mother's touch. When she would get home from work and go to his side, he would smile and coo. He knew the smell of her perfume, the sound of her footsteps on the kitchen floor.
His mother would read to him, romance novels mostly. If there was a captain in the story – and there's always a captain in the story – she would rename the hero Captain Carson.
He loved the Mediterranean food his mother learned to cook. He also loved pumpkin pie with vanilla ice cream and whipped cream – that was his favorite dessert.
He loved music – Jim Brickman, in particular. Whenever he heard the lilting piano intro to "My Valentine," he would smile. Carson went to several Brickman concerts, whenever he was in the area, and got to meet the artist once at the Strand-Capitol Performing Arts Center.
He was always clean and always dressed to the nines. When he got older, he was always shaved, and his hair was neatly cut. He looked, his mother once said, like he could be on the cover of GQ.
He lived a full life. He liked flying in small planes – the bumpy ride made him laugh. He visited a pub and listened to a band. He went fishing off of a dock.
He lived for the small moments – a touch, the feel of a summer breeze on his face, a sound, his mother whispering "I love you" in his ear.
And he loved, more than anything, his mother's embrace.
Kimberly, through effort and experience, became an expert in shaken baby syndrome. She was active in raising awareness about it, speaking at schools and conferences and anywhere she could to let people know the horrible consequences of shaking an infant. Carson accompanied her. In a way, he was speaking through her. She served as his voice.
His voice was heard. The Junior League of York took up Carson's cause and pushed for legislation to raise awareness of the syndrome. In 2002, the effort and others across the state prompted the state Legislature to pass a law called the Shaken Baby Syndrome Education and Prevention Program, mandating hospitals to provide new parents with materials on the syndrome and requiring them to sign a statement confirming that they had received the materials.
His grandmother said the law has saved lives.
Carson, she said, saved lives.
odd Keating met Kimberly when Carson was about a year old. He was smitten and had gone to her house to meet her family. It was a package deal. You want to be there for Kimberly, you have to be there for her family.
He remembered sitting in his car in her driveway and thinking, "I don't know if I want to do this."
He told Kimberly, "This is a lot."
Kimberly responded, "You'll be all right."
He had his doubts. He was single, had no children of his own, and here he was, about to embark on a relationship with a woman who had a child who required care 24 hours a day, seven days a week. It would have been easy to simply drive way.
His friends thought he was making a mistake.
But he made up his mind. He loved Kimberly. He loved Alex. And he loved Carson.
Later, he would say, "It was the best decision I've ever made in my entire life. Carson changed my life and changed who I am. He changed me in a way I never thought was possible."
Through Carson, Todd learned so much. He learned what compassion is. He learned patience. He learned the true meaning of love.
His relationship with Carson made him rethink everything – what he thought about life, what it was to be successful and what it meant to be a human being.
He would sit on the couch, Carson leaning against him, and watch the Golf Channel. Those moments, while they might not seem like much, meant the world to Todd. When he first got involved with Carson, he didn’t understand him. After spending time with him, after something simple, like watching golf on TV with him, he came to understand. It was about spending that time, just being present, just caring.
It changed what he cared about. He had worked for a large corporation in a job that required some travel but not more than a couple of days at a time. Not long ago, the company did some restructuring and he was offered a job that would keep him on the road through the week.
He told the company he couldn't do it.
"It wasn't the right thing to do," Todd, now 58, said. "There was no doubt about that. There are things more important than a job."
He said, "I've been very lucky to have him in my life. Carson has a mission in life. He was put on Earth for a reason. I was a part of that mission.
"Carson made me a better person than I ever thought I could be."
Alex doesn't like the word "normal." But it's the best word to use to understand what life with Carson was. It was their normal, she said. To others, it may not have seemed that way.
And if Carson's life was extraordinary, it was in a good way.
"How many people can say they had as much influence on people as my brother?" she said. "Carson taught me so much."
He taught her patience and how to appreciate simple things and how to love unconditionally and totally.
As her step-father said, and as nearly everyone who cared for or came in contact with Carson said, "He made me a better person."
Carson wasn't her only teacher. Her mother taught by her example.
"I almost can't put it into words," Alex, 30, said. "She is so strong. She fought for everything for Carson. I want to be like her."
Kimberly never knew she had it in her.
She doesn't know where it came from. Strike that, she does. It came from Carson, that strength. She recalled many nights, sitting at the kitchen table, poring through papers. Raising her son was a complex task. There were insurance companies to deal with. There were legal issues. There were health care concerns; Carson often developed serious health issues related to his condition, from meningitis to pneumonia. There was the day-to-day operation, the scheduling, to make sure Carson was cared for. Carson, from the time he was born until his death, was never alone.
"My son, through all of his challenges, was able to force me to do things so far out of my comfort zone," she said. "All aspects of my life – everything – was changed by Carson. He was my son. I loved him and wanted to give him the best life possible."
She fought for her son. If he didn't have something he needed, she would do what it took to get it. Sometimes, she said she had to create programs or change the way the agencies and health-care providers handled cases like Carson's.
She had a lot of help – from Alex to Todd to her parents to Ann to the doctors and nurses to the caretakers who fell in love with Carson.
Carson, she said, was a gift.
"I think everybody has a purpose," she said. "And I believe my son's life had a purpose."
Caring for Carson took its toll, though. Physically, Kimberly was worn down, sleeping very little. As Carson grew, she would struggle to lift him, and when the day came that she couldn't, she cried.
It took its toll mentally too. Kimberly and Alex, before Carson, would travel extensively, all over the world. Carson always came first and that, even for the most patient of human beings, would give rise to feelings of resentment.
Kimberly missed her life before Carson, before walking the tightrope that her life had become, balancing caring for her son with her salon business and her life.
A couple of weeks after he passed away, Kimberly said it still didn't seem real that Carson was gone.
"I don't want him to go away," she said. "I don't want people to forget him. My son's life was worth something."
In those days after Carson died, Kimberly would find herself walking aimlessly around her York Township home. She went for drives. She didn't quite know what to do with herself.
"I miss him," Kimberly, 52, said. "I miss his smile. I miss putting my head on his chest. I miss everything about him."
Carson died at home on April 6, a Thursday. He was 23 years and 14 days old. He died as a result of complications from pneumonia. His family was by his bedside.
At the service, the preacher spoke about resurrection and everlasting life. Carson, he said, was resurrected in all of those he touched, all of those who said, repeatedly, that he made them better people, that, in his short life, he had more influence and done more good than anyone could hope for.
"There are children alive now who wouldn't be alive otherwise if not for Carson," the preacher said. "He couldn't speak. But his voice was heard."
After the service, those in attendance retired to the back yard at the funeral home.
They had pumpkin pie with vanilla ice cream and whipped cream.
Reach Mike Argento at 717-771-2046 or at email@example.com.