THE SANDWICH MOM
A Baby Boomer mom finds herself caught in the middle of taking care of her mentally and physically disabled child at home and her ill mother 1,500 miles away.
Photography by Fran Collin
If Beth Wyman could clone herself, one of her bodies would stay in her Yonkers, New York, home with her children while the other Beth would be in Illinois, helping her elderly mother. A familiar “sandwich” scenario? In this case, there’s an added challenge: One of Beth’s three children is retarded.
With the birth of their son 14 years ago, life changed dramatically for Beth and her husband, Nick. Beth vividly recalls doctors coming into the recovery room after her delivery to inform her there was “something out of the ordinary” about the infant. “I knew without their saying it that my baby was retarded.”
Tommy was diagnosed with Rubinstein-Taybi, a syndrome evidenced by such physical characteristics as thumbs that are longer than his other fingers, ears that are lower than normal and folds on his eyes. A series of operations were performed as he got older to correct these and less visible abnormalities, including undescended testes. But first, Beth had to get used to the idea of having a son who was so challenged.
“I sobbed and raved for a couple of days,” Beth says—until she called home from the hospital and heard the new message Nick had put on their answering machine: “We want to share our joy and pride in the birth of our son….”
“I hadn’t thought to be joyful or proud that Tommy was with us,” Beth says. “That was the beginning of my realization that this didn’t have to be just grief. Later I realized I was grieving the loss of the boy I had expected, who would grow up to ask for the car keys. I grieved that loss for a long time. But I concentrated on Tommy as a unique little person.”
She also had to consider her two young daughters. “Caitlin, who was nine, thought that because of the grief around her, we were waiting for Tommy to die. I wasn’t thinking much, so I didn’t tell her everything would be okay. Later, she became like a mother to him.”
Beth and Nick’s other daughter, Madeline, was only five. “She was so young, she didn’t get it that anything was wrong with Tommy. He was totally adorable, with an outrageous laugh. They became buddies.”
In the following years, Beth alternated between “days when I thought I could handle this, and days when I couldn’t.” What she says was one of the most devastating moments was when Tommy’s teacher—from the public school where Tommy attends in a “contained” class for special-needs children—told her that the testing required for federal funding showed that his IQ was 50.
Tommy is “totally nonverbal,” Beth says. He has no concept of letters or numbers, so the family communicates with him through a “picture exchange,” line drawings of various activities on laminated oak board. For instance, Beth explains, when Tommy comes home from school he sees the icon for “unpack,” so he unpacks his school bag. A second icon is a toilet “because he’s not trained and needs help with this.”
There’s also a “schedule board” with icons, such as a book, which might mean they’ll go to the library where he likes to look at the pictures in the books. “That way he knows what he’ll be doing next and can follow along with us. Otherwise he’d be frustrated and make a fist and bite his palm because he’s angry at himself for being unable to understand.” He can also communicate what he wants by putting removable icons on a Velcro strip.
She and Nick are determined to “maximize Tommy’s potential, the way you do with all your children.” They enrolled him in after-school activities with South East Consortium, an organization that helps disabled children. He bowls, exercises, and has pizza-and-movie days. “These are his play dates,” Beth says, “because he can only do parallel play. He can’t engage with other kids.”
They try to keep him busy; otherwise, he’d get bored. “Then he lets us know by twirling.” On weekends Tommy has swimming lessons and Sports Skills. But his favorite sport is wrestling with his father. “Tommy’s built like a football player,” Beth says, at his likely maximum height of five feet and 145 pounds. ”But he has slow reflexes. And where other people know how to catch themselves if they fall, he can’t do that as quickly.” So Nick wrestles with him as carefully as he would with a three-year-old.
Meanwhile, Beth is wrestling with her other responsibility: her 80-year-old widowed mother, Marie McDonald, who’s become increasingly disabled since a heart-bypass operation two years ago. A vein was taken from her leg resulting in lymphadema, causing fluid to collect in her leg. She can no longer get around without a walker, and also suffers from diabetes.
Last summer Beth began a grueling routine of flying monthly to the Chicago suburb of Downers Grove to stay with her mother for six days. “My two brothers live in Illinois, “ Beth says, “but they work out of state, so they can see Mom only on weekends. And my sisters-in-law have their own parents to care for. Since I’m the daughter, we thought Mom was more likely to listen to me about moving into an assisted-living place.”
Although she takes her mother to look at these facilities, it’s been frustrating. “I think she’s scared. She agrees to go with me, then doesn’t do anything. Since Mom lives alone and there are stairs, my brothers and I are concerned about the danger factor. I’d feel more at peace if she’d wear one of those alert buttons, but she won’t so she’s always at risk.
"It’s great for her when I’m there,” Beth says, “because she’s very isolated.” She’s also depressed but refuses to take anti-depressants. Beth makes sure they do fun things together like shopping and dinners out. But though Beth insists that the monthly trips are “a service I want to provide for Mom, because she was always there for me,” she admits they’re very stressful. “Mom’s so lonely, she talks endlessly. I have to get away for power walks.”
One of those walks paid an unexpected dividend last year, when it led Beth past an intriguing bead store. This inspired her to create costume jewelry, which she sells. “It’s a new business for me.” Her three other jobs include working as community liaison for a state senator twice a week, which enables the family to get full health benefits; as well as narrating audio books and assisting a friend who provides entertainment for special events.
But her acting career was put on hold soon after Tommy was born. Worried about getting “trustworthy care” for the children, she and Nick, who’s also an actor, agreed they couldn’t both be on stage at the same time. “He makes more money,” she says, explaining why her career has taken second place. “Besides, I’m the mom.”
Five years ago Beth’s older brother, Tom (for whom Tommy is named), told her that for her fiftieth birthday he wanted to give her something that would “take the burden off you.” He asked what would she like. “I thought the most important thing was childcare,” she says, “because that would enable me to work again.” Her brother pays for an au pair who lives in and helps take care of Tommy. This frees Beth to audition for TV shows (she’s been on Law and Order), although she doesn’t have time for stage work.
As we talk, she’s preparing to head to Illinois to take her mother for another round of assisted-living facilities. But Beth doesn’t sound hopeful. “Mom always says ‘This one isn’t right’ or ‘I can’t afford it.’ My brothers tell her she can, and I say I’ll contribute when my girls [now 23 and 19] get out of college. But she accused us of thinking she won’t ‘recover.’ I thought, recover form what, aging?” Beth has now cut down the length of the monthly visits from six days to four. “It’s better for Mom, too, because there’s this underlying pressure. It was also disrupting my life too much and was hard for Nick.
“He’s a great dad,” she adds. “He plays with Tommy all the time; they play ‘monster’ on a daily basis!”
She recalls that early on the hospital nurses said they could tell whether a marriage was likely to survive the strain of raising a disabled child. “They said they knew Nick and I would be in this together.”