Sunday, January 18, 2009

the real reason

The first thing I did when I walked into the Michael Carter Lisnow Respite Center in Hopkinton last Friday was look for the reception desk, someone official-looking who could direct me to the offices of co-directors Mary McQueeny and Sharon Lisnow. The wide open living room pulsed with bass lines while staccato drum tracks ricocheted off the walls. A knot of boys bounced in front of a television, singing karaoke. A couple of dogs loped in from a nearby kitchen, one had three legs. Several men and women, with Down Syndrome, sat in large armchairs talking among themselves, a couple of kids were nestled in wheelchairs, their heads tossing from side to side.

In the center of the room was a large stone fireplace. I recognized the portrait of the boy above the mantle: Michael Carter Lisnow, the center’s namesake. Looking around, it was hard to tell who was in charge. There were no name tags. I spotted a tall young man and took my chances with him. “That’s Mary over there at the table, in the red sweatshirt,” he said. Sitting at a picnic-style table was a forty-something blond woman wearing a Killington, VT., hoodie, a small, thin gold cross hanging out over the collar. She had kind, blue eyes. She was on her cell, leaving a message for one of the staff. When she hung up, I explained that I was running the marathon for the center and wanted to stop by and say hello. Her face lit up. “Thank you so much. We really appreciate your helping us out. Let me show you around.”

(Top: Mary McQueeny, me, and Sharon Lisnow; bottom Ricky and Brianna)

We walked past a table of young women with their hands out, waiting for their nails to be painted. Mary introduced me as her “friend.” Some of them spoke to me, but I couldn’t understand their words, so I just said hi and smiled. They smiled back. “The runners are so important to us,” Mary said as we moved on. “We have a $1.3 million budget and one-third of our funding comes from the marathon. So it’s huge for us.” Mary and I went upstairs, and stopped in front of the infant care room, where around twenty newborn-to-three-year-olds are looked after. “The money you raise, the checks that come in, means I can turn around and say, we can accept the triplets now. They’ve been waiting to get in since last Thursday. All three of them have disabilities. And their mom has cancer.”

MCLRC provides nearly 100,000 hours of respite care per year for the families and caregivers of developmentally disabled infants, toddlers, school children, and adults (some as old as fifty) and offers everything from day care and after-school programs to overnights and job training. Giving parents and caregivers a break from the constant, oft-overwhelming care is critical. MCLRC is the only center of its kind in the country, Mary said, and developmental disability experts have visited from as far as Chicago and Washington, D.C. Most facilities cater to three-to-18-year olds, or adults, but not all ages. ‘The (Massachusetts) attorney general has been out to study us to see if there’s a way to duplicate it. We’d love to see 500 of these places.”

Every once in a while as we spoke, a chorus of song erupted from downstairs, punctuated by clapping and laughing. It sounded like summer camp. In the next room, a boy with Down Syndrome sat on a stool in front of a fireplace strumming a guitar. A young guy, maybe a high school or college student lay back on the couch listening, sweatshirt hood up. The kid sounded pretty good. Mary introduced us. "Markie's eleven. He's been coming here since he was one, and basically, all he could do was the army crawl. He had no words."

“How long have you been playing, Markie?” I asked.

“Longer,” he blurted, hitching up his sweat pants.

“Do you mind if we take over this room, Markie?" Mary asked. "It’s the quietest place in the house right now.”

“Downstairs and play?" he said, quickly packing up his guitar and hurrying to the stairs. "Awesome!"

Markie and his mom live on the third floor. She was alone, living hand-to-mouth and had nowhere else to turn. The financial and emotional devastation of caring for a child with severe disabilities is particularly acute in the first years, Mary said. Every birthday is a milestone unmet: no first steps, no first sentences, no sleepovers. “There’s an 87 percent divorce rate among couples with developmentally disabled kids.”

The dream for this center germinated when Mary and Sharon were neighbors in Sherborn in the early '90s. Mary’s son went to school with Sharon’s 5-year-old disabled son Michael. Mary has a degree from Boston University in severe special needs and elementary education and the two women bonded right away. Michael was born 16 weeks premature, with cerebral palsy, and weighed just over a pound. His father’s wedding ring could slide up and down his arm. Doctors gave Michael a 10 percent survival rate, but he lived for ten years. Sharon refused to lose hope even though Michael couldn’t walk, talk or see. But he could laugh and learned the sign for “I love you.” “He understood," Mary said. "He just couldn’t verbalize." To give Sharon and her husband a break, Mary sometimes moved into Sharon’s house to care for Michael.

“You just don’t know, unless you’ve been in it, how hard it is. These moms are living like torture, and dads, too. When I met Sharon, she looked like she had shoe polish under her eyes, like football players do. She didn’t sleep for ten years. These mothers, that’s how they live. Plus, they're living on the edge. You just never know what lies around the corner. Out of nowhere Michael would aspirate, get pneumonia, and be in the hospital for three months. Or these mothers walk in the bedroom and their child is dead.”

Michael eventually succumbed, too. He died eleven years ago, from complications during his seventh stomach surgery. It was April 20th, 1996, the day of the 100th anniversary of the Boston Marathon. The date of Michael’s death has almost always fallen on race day. The next year Sharon ran the marathon in her son’s memory. Mary, who ran track at BU, trained Sharon, and the two of them have tackled it six times since. This year, almost 80 runners, including me, will carry Michael in their thoughts, and Sharon’s and Mary’s dream in their hearts.

The center has been lodged in a lot hearts, since the beginning, back when it served just four families in 1997. Hopkinton and neighboring towns rallied, donating plumbing, painting, paving and landscaping services, computers, a website, marathon numbers, even a 2,000-square foot addition, which was completed last summer. The “it takes a village” mentality is at the core.

The staff is noticeably young, and male. “Typically, with this population, you have maternal, older women. That wasn’t what we wanted. We wanted this to be a place that felt more like natural integration.” Some staff members came here by way of mandated community service, high school students busted for drinking, for example. “When Michael was alive, he kind of attracted those wild guys. They were just fun and they found Michael to be cool. Great kids, with big hearts. I don’t think we’ve hired anyone for experience. We’ve hired them because of their kindness.” Many staffers have been at the center seven years, nine years, all 12 years. Twenty-four months is the typical burnout rate in this field.

Mary and I stopped by a large blue bedroom with four beds, and plenty of floor space. “One of the biggest things for my kids, starting when they were about six, was sleepovers. But for these kids, you can’t really do that if your friend doesn’t have a wheelchair ramp at their home or if you have seizures. So the first Friday of every month, we have a slumber party here.” She opened a cabinet to reveal a large TV and DVD player. “We used to have a much smaller television. But I was giving a tour a while back and the man commented on the size of the set. I just said, 'it’s all we have.' Two days later, on the front porch was this TV with a note that said, 'thanks for the tour.'”

We passed through a media room, an arts room, a basement lounge where some boys were virtual bowling with a Wii paddle. This place was clearly different. It was a family, a community within a community. You could feel the warm, playful vibe in the air – the constant opening and closing of the fridge, the frozen pizza slices being unwrapped in front of the toaster, the guitar playing, and dogs nuzzling, like that cool neighborhood house where all the kids hung out, coming and going as they pleased, where something was always going on. The smiles and laughter were so rampant that the place seemed packed with friends rather than staff and clients. Clinical distance did not exist. Where some might think terribly compromised lives, here one sees kindness, joy, respect, love.

At the end of the tour, Sharon joined us. She had been darting about all afternoon, and our paths didn’t cross. She, too, was terribly grateful that I was running. I wanted to tell her I was sorry about Michael, that what had been built here was an amazing legacy, but knew probably the best thing I could do was just run that marathon, and spread the word, and get people to throw in their support. I told Sharon I had no idea the center was so unlike a facility. She smiled. “Even when you see it on the website, it's not what you think.”

A few feet away, a cluster of teens and pre-teens sat around waiting for their parents and guardians. Mary and I walked over. “Hey, Danielle,” Mary said to a tall, dark-haired girl slunk back on the couch. “Can you say hi to my friend Caleb? I know you've been practicing your big voice.” Danielle twisted her face in concentration, took a couple big gulps of air and slowly rasped out a “hi.” A small eruption of clapping. “That was really good, Danielle,” Mary smiled. Danielle looked around, grinning.

(the starting line for the Boston Marathon, a half mile from the respite center)

Mary told me to drop by anytime if I wanted to do a long run on the marathon course. "The starting line is less than a half mile from the center. We have five showers. We'll make you lunch." She also offered me a bed the night before the race to avoid the chaos of the buses. "Some runners stay with us the whole weekend. It's a good time. We cook up a big breakfast." I told her I'd love to. As I gathered my things to leave, I asked Mary for a few marathon tips: start out easy, she said, the first eight miles are not all downhill like they say; as a guy you'll definitely want to use glide up top to prevent chafing; and Heartbreak Hill is not a single hill, but a collection of four. “But once you get to Boston College, you’ll be through.” I thanked her. There was no longer any doubt about finishing the marathon. Looking around the room -- at Markie playing with a cell phone, at Bennie, the three-legged Wheaton terrier, at the young male staffers throwing their arms around a couple boys in the kitchen -- no way would I throw in the towel at Heartbreak Hill, no way would I not finish.

“And don’t worry,” Mary added, “some of the kids will be at Heartbreak with balloons, hooting and hollering, just cheering you guys. They make a huge difference if you think you can’t go on.”

Please consider sponsoring my boston marathon effort. click here for more info.


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