May 13, 2001
Published in the Asbury Park Press 5/13/01
By MICHAEL RILEY
Even with the walker, it takes a long time for Regina Ferris, 54, to walk down the hallway from her kitchen to the door leading to the garage of her Dover Township home. But her husband, Bob, and their youngest son, Joshua, are waiting for her.
Joshua, 20, who has Down syndrome, can't wait for Mother's Day to give his mom the present he picked up for her: a huge necklace, a medallion, really.
"As far as I know," Joshua says with a certain light formality in his tone, "she's a good mother, and a devoted woman."
It's not easy for Regina to take her place on the garage steps to receive her gift. But she's used to that: the degenerative nervous-system disease known as multiple sclerosis (MS) has been with her for 30 years, slurring her speech, making it hard to walk and hard to use her fingers and hands with much dexterity. In that time, she's raised four children and is a grandmother three times over.
Joshua faces his mother, with his present in his hands, and a huge smile on his face.
"This is a token of my esteemed love for you," he says, and he helps his grateful mother with the clasp so she can wear it proudly. She'll probably wear it today, as her four children and three grandchildren gather to celebrate and pay tribute to her.
In 1971, Regina and Bob Ferris were newlyweds, married but three weeks.
"We were having dinner with my parents," she said. "Crabs and beer. I got up from the table, telling everyone I was feeling tired and needed to lie down."
In a matter of minutes, she'd lost the ability to speak and swallow, the ability, even to move. She spent six weeks at Cornell Medical Center in New York, where her condition improved somewhat and she finally heard the diagnosis: MS. No cure, not even a definitive cause. The only warnings she had before that terrible night when the disease overcame her were a slight deterioration in her near-perfect handwriting, and she dropped a petri dish in the lab where she worked.
When she went home from the hospital, she was left with a body that wouldn't respond very quickly to her brain. She never drove again, never worked outside the home again. As it turned out, she didn't have a whole lot of time on her hands, anyway.
"When I was getting out of the hospital," Regina says, "I asked the doctor, 'When can we start a family?' The doctor told me slow down and not even think about that for a while. He said that I already had a daughter (Jackie, 4 years old at the time, is Regina's daughter from a short-lived first marriage) and that I should concentrate on her."
It didn't take long for Regina to realize that for her and Bob to start a family presupposed that they would remain a family. After all, when Bob married her, he hadn't signed up for life with a woman with a serious disability that never would improve.
"I offered him an out, many times," she says. "Bob is one in a million. He told me he loved me, that he married me in sickness and health, and that he was staying."
Six months after she left the hospital, Regina and Bob tried to start their family: "unplanned family planning" she calls it. It took a few years, but Regina became pregnant.
"Twins," she said. "First shot out of the barrel."
Matthew and Todd are 27 years old now.
Seven years later, Joshua was born on Regina's birthday, and the announcement that he had Downs syndrome hit her, she said, "like a punch in the stomach." Once again, she had to ask herself if she was up for the challenge, wondering if she had done something wrong. But she says she realized she hadn't, and Joshua, about to graduate from Toms River North High School next month, is a joy.
All these years later, she does remember having reservations about having more children after the MS struck.
"I've had 30 years to grow into this disease. Back then, I thought, 'Am I going to be able to do this?' But if you wait for all the lights to turn green, you'll never go anywhere, she says. "I get frustrated. On the one hand, who wants to drive with all the crazies on the road. But do I miss it? Of course I do. I used to ask why I, a good little Catholic girl, who used to walk to Mass every day, got MS. But you deal with it. You do what you have to do."
Including buttoning little kids' shirts, tying little kids' shoelaces.
"At least now, they have Velcro, just in time for my grandkids."
Perhaps it's her daughter, Jackie Murray, 34, of the Seaville section of Upper Township, Cape May County, who has the best perspective on what her mother went through back when she and her brothers were growing up. Married for 10 years, Murray has three children under age 10.
"I don't know how she did it," Murray admits. "I marvel at how she did it. On bad days, when my kids are driving me crazy, I can just round them up and say 'We're going to the park.' Mom could never do that. She was stuck in the house. But she did it. Dad was at work, she took care of us, cooked the meals. I was older when my brothers were born, so when Mom needed help, she called on me. Maybe I had to grow up a little bit faster than other kids."
When young kids get a little wild, need a little discipline, refuse to come when called, parents usually have the ability to quickly get them. Regina didn't have the lux-ury if the kids ran.
"I threw things," she said.
Her three older children remem-ber with laughter the big wooden spoon that would come flying at them. Or not.
"My aim was bad," Regina admits.
Matthew agrees with his mother that the kids eventually learned to come back when called, because there was no telling if the spoon might hit them in an unintended place. In most families, it's the kid who gets scolded with the admonition, "Put that down. You could put somebody's eye out." In the Ferris household, it was Mom who had to remember that piece of advice.
"Actually," says Todd Ferris, "we eventually figured out the safest thing to do was just to stand right in front of her. She could never hit us there."
Mom rarely missed a football game or school performance, Matthew remembers.
"Her handicap never got in the way," he says.
"I wanted my children to have as typical a life as possible," Regina says.
She succeeded so well that Jackie never mentioned her mother's disease to the guy who would become her husband, until min-utes before she brought him home to meet her parents.
"I told him that my mom had MS," Jackie says. "He thought I said, 'My mother's a mess.' He was going to be uncomfortable either way. But my mom always makes people comfortable. She always makes them laugh."
In fact, none of Regina's children can ever remember any kid mak-ing fun of their mother when they were growing up.
"It just didn't happen," Matt says.
Regina is proud of her kids, of their self-assurance and self-confidence.
And the whole family's ability to laugh. "Josh and Bob and I were at Wal--Mart not long ago," she says. "Bob was pushing my wheelchair. Josh was walking next to me. A little girl walked past us. She turned to her mother and said 'Mommy! Look at the handicap family!' I grabbed Bob's hand and said, 'Well, I know about Josh and me. What's your problem?' "
Jackie Murray says the family has nothing special planned.
"Just a time when all of us gather together and have fun together."
It is, she says,
always a special time, when Mom is around.
Published on May