By Victor Greto
REHOBOTH BEACH – How can you prepare for a 7-year-old’s funeral?
The child’s gathered friends and classmates, the music borrowed from the soundtrack of his beloved “Toy Story,” the orange balloons floating to the sky – they seemed better suited to a birthday party.
Neither a funeral nor a birthday party were on Maribeth Fischer’s mind during the winter of 2005. As that February waned, little things consumed her days. The writers’ conference she had imagined and organized was fast approaching. Name tags had to be placed in their plastic holders. Brochures needed folding. Registrants still were calling.
Fischer was nearing the end of preparations for “Writers at the Beach: Pure Sea Glass.” Her impetus for organizing the day of readings, workshops and conversations in Dewey Beach was her 7-year-old nephew, Sam.
Like his three older siblings, Sam had mitochondrial disease, a disorder that robs his body of the energy it needs to eat, to breathe, to live. All net profits from the conference would go to the United Mitochondrial Disease Foundation.
Fischer, a novelist and essayist, had never planned so much as a party. Now, along with a small contingent of friends, she was responsible for the conference schedule, along with sponsors, publicity and other minutiae.
Two months had passed since she last had visited her sister Anne’s family in Milwaukee. Zachary and Sam, whose cases were more severe than those of their older sisters, had been accustomed to seeing Fischer nearly every month. Planning the conference made the trips more difficult.
“If Sam dies before I can see him,” Fischer told her friends, “I’ll never do this conference again.”
On March 3, 2005, two days before the inaugural “Writers at the Beach,” Sam went to school. He filled images of heart shapes with a rainbow of colors that burst past the lines.
He came home and pitched a fit on the phone with his mom when she told him they were out of french fries. Sam loved french fries. But he couldn’t eat many. His disease prevented him even from eating a fry for each year of his life. On birthdays, his mother would break two or three fries into the appropriate number of pieces. That, for Sam, was an occasion.
His mother, Anne Juhlmann, knew he didn’t have long. But that day, when she got home and couldn’t wake him, that knowledge couldn’t calm her.
Sam was lethargic. His heart monitor fluctuated, something Anne was used to. But late at night, as Sam’s condition deteriorated, the other children heard their mother scream to call 911. Sam’s heart was weak but beating when the paramedics arrived. He wasn’t responding.
Somewhere between the front door and the hospital, Sam’s heart stopped.
One storm after another
Two days later, more than 100 writers turned to Fischer’s conference for inspiration. She directed the traffic of poets, novelists and essayists. Sam’s name and face, along with those of his 12-year-old brother, surrounded her
“I found myself looking at his photo a lot,” she says. “I think I was numb.”
Fischer decided to withhold news of Sam’s death from her audience and the 13 regional writers who were to lead the sessions.
“The focus would have been on me, and how I was doing,” she says. “And I wanted everyone to have a good time.”
In photos taken at the conference, she looks happy. In one sense, she was. After all, she was in the midst of a successful debut as a conference director. And the $10,000 she raised for the UMDF would give hope to children like Sam.
She flew to Milwaukee the next day, and Fischer again chose the role of a planner.
She reproduced on funeral brochures Sam’s last coloring assignment. She scurried from one arts-and-crafts store to another in search of orange posterboard, Sam’s favorite color. She set up displays of his school books and his favorite toys.
The next morning, Fischer awoke early. She, her mother, stepfather, brother and ex-husband left for the church to blow up and tie strings around 200 orange balloons. Fischer arranged the tables for the reception and kept an eye on her sister.
Did Anne need a cup of water? Did she have a chair?
It kept Fischer busy. It kept her well.
As she watched her nephew, her niece, her sister speak to the crowd about Sam, Fischer worried like she had as some of the conference’s authors led their sessions – this one was nervous; that one is shy before crowds.
“And after,” she says, “taking down the posters and figuring out what to do with the flowers and the food and then I flew home the next day and had to get back to conference stuff. Getting the money to UMDF, contacting the writers to let them know about Sam, meeting with the volunteers to go over how the day had been.
“I think I might have been afraid to stop planning, organizing, doing at that point.”
She didn’t stop.
Everything in its place
Fischer’s anxiety was not evident to Fleda Brown, Delaware’s poet laureate and a conference discussion leader.
“This,” she says, “for a small state and with very few organizers and without a university supporting it, is amazing.”
The speakers volunteered their time. “There would be no way to bring that many good writers together,” Brown says, “if there weren’t a cause.”
“The value of a conference like this,” Brown says, “is you get a whole bunch of people together and they’re talking about the value of the correct choice of words.”
Tom Viall, executive director of the UMDF, appreciates that focus on clarity of expressed thought.
He says Fischer’s conference provides “a qualitative audience that has the expressive power to take our message and share it artistically with a larger audience.”
Fischer is cognizant of the allure for participants.
“It’s really important to me that Zach’s and Sam’s stories are out there,” she says, “but this isn’t a mitochondrial disease conference. This is a writers conference first.”
When Fischer was in Wisconsin for the funeral, Sam’s primary doctor commended her for planning the conference while the child was alive. Fischer, too, was warmed by the thought that she’d acted on her desire to help the charity.
“And I’m not sure I would have done this had Sam died first,” Fischer says. “I think some of the heart, my heart, would have gone out of it.”
ABOUT THE DISEASE
Mitochondrial diseases prevent cells from working as they should, which means the body doesn’t have enough energy to perform basic functions.
The diseases cause most of their damage in cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Mitochondria are compartments within every cell but red blood cells. They produce more than 90 percent of the body’s energy. Failure to do so causes cell injury or cell death. When mitochondrial failures spread, entire systems can fail.
Depending on which cells are affected, this can result in a loss of motor control, muscle weakness and pain, gastrointestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
Mito, as it often is known, is believed to strike as many as one in 2,000 children. While children are the primary victims, adult onset is becoming more common.
Source: The United Mitochondrial Disease Foundation, www.umdf.org.