Chronic and complex: A family embraces their messy, beautiful life

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Lisa Burgess with (clockwise from the top) her husband Mark and sons Ben, Jamie and Dakota. “We always do selfies,” Lisa says. “I make them.”

Dakota Burgess readies to take his place on stage at Ryles Jazz Club alongside his band mates. He paces, grips his saxophone, flips his shaggy blonde hair and paces some more. Twenty-year old Dakota is autistic, as are the other members of the band from Boston Higashi School, a day and residential program for children with Autism Spectrum Disorder where Dakota has been a student for 15 years.

Dakota’s parents, his brother Jamie and a handful of friends are all in the audience, cameras and smiles ready. The show is almost starting. His mom, Lisa Burgess, leans over to a friend. “Just wait, they’re really quite good.”

The music starts. The band is good. Great, even. Dakota is nervous but focused and happy. He stays in tune and handles the spotlight like a pro during solos. At the end of the set, he bows and heads off stage.

Watching him high-five with friends, you’d never guess that Dakota was a defiant toddler. Or that he was a fearful 5-year-old. Or that his parents felt they were losing him to frustration and rage before finding Higashi. Or that he has received care at Boston Children’s Hospital for most of his life.

Dakota still struggles with anxiety but has thrived both academically and socially at Higashi and is learning life skills that will help him become more independent. The school’s jazz program and collaboration with Milton Academy has been a huge bonus.

“He keyed into music very early on,” Lisa says. “It’s really what saved him.”

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Dakota playing saxophone with the Boston Higashi School jazz band on April 30, 2015.

Tonight is Dakota’s turn to shine. In most families, his autism and the specialized care he requires would make him the center of attention all the time.

But the Burgess family isn’t most families. Of their three grown sons – Dakota, Ben and Jamie – only 32-year-old Ben, a 2004 graduate of Wheaton College, lives on his own. Lisa jokes that Ben is “the gifted one” but goes on to say, “Seriously, he’s a fantastic human being. He gets our family and feels a real sense of responsibility towards his brothers.” Ben is a co-guardian for his 31-year old brother Jamie, a lifelong Boston Children’s patient who wasn’t supposed to live past 18 months of age.

“Jamie technically shouldn’t be alive”

Jamie Ryles
Jamie

To date, Jamie has logged over 500 inpatient admissions, more than 50 procedures and seven years’ worth of nights at Boston Children’s. He has been pronounced dead twice. He suffers from a primary immune deficiency as well as various cardiac, respiratory, renal and skeletal issues. Jamie sleeps with a pressurized mask on a bi-PAP ventilation machine with 2.5 liters of oxygen.

Because he can go into cardiopulmonary arrest without warning, Jamie requires a nurse, one of his parents or his brother Ben by his side at all times. Even now in his state of relative wellness, Jamie averages 60 outpatient visits a year to Boston Children’s.

“I kid him that he’s a high-maintenance child,” says Lisa.

As different as they are, Dakota, Ben and Jamie all have something in common–tenacity. They work hard to overcome challenges and seem to enjoy the process. It’s a trait they’ve inherited from their mother, who has carried her family through serious health issues unimaginable to most parents. Lisa says her ability to persevere comes from the lack of an alternative.

“The option to check out is not available,” she says. “You can only cry and bellyache so much. Do I have periods of grief? Absolutely. But there are different ways to go at grief. I like to get involved and stay busy to affect change.”

Lisa says that the late Dr. Lyn Haynie – chief of Boston Children’s Birth Defects division until 1996 – was a great influence on her attitude and approach. When Dr. Haynie was diagnosed with terminal cancer, she chose to live her final months at home making memories with her family. “She was somebody who had to leave her kids early and was still embracing what she had,” remembers Lisa, “She told me, ‘you can’t change the cards you’re dealt, but you can change how you play them.’”

Lisa and Mark
Mark and Lisa

Lisa admits that her life is “insane,” but she prioritizes so it doesn’t become overwhelming. “My house may be falling apart, my kitchen may never be redone, but we always manage to have fun.” Somehow she fits in even more of the things that are meaningful to her, like caring for her elderly parents, volunteering as president of Higashi’s parent association, and dedicating her experience and energy to the Boston Children’s Family Advisory Council (FAC).

“I couldn’t do everything I do without the support of my husband Mark. He is there every step of the way and embraces the wonderful insanity with me.”

Giving back…

There may not be anyone who knows the ins and outs of Boston Children’s better than Lisa Burgess.

Dakota has received care his whole life through Primary Care and Neurology. Ben was a Primary Care and Ophthalmology patient. The physicians who have treated Jamie, meanwhile, span almost every department of the hospital, including Pulmonary, Cardiology, Immunology, Nephrology, Genetics, Sports Medicine, Psychiatry, Adolescent Medicine, Developmental Medicine, Complex Care Services, Ophthalmology, Audiology and Dental, amongst others.

When you add up the time she’s spent at Boston Children’s, it’s not surprising that Lisa continues to stay involved and give back. “Jamie and I kind of grew up here. This is my backyard.” She surveys the campus teary-eyed, pointing out people and buildings she’s intimately familiar with. “I look around here at so many things that have brought us joy. I know what is possible in this space.”

Lisa takes her work with the Family Advisory Council very seriously. The council isn’t a support group, she says; it’s a team of committed parents who lead and promote family-centered initiatives at every level of the hospital and seek to make an impact in everything they do. Lisa has worked on many projects during her 26-year tenure on the council, including the hospital’s first family-led initiative–Family-Centered Rounding–that lets families become part of their child’s health care team.

“Very early on in Jamie’s life, a very special group of people at this hospital took me in as a member of their team,” Lisa says. “And that’s what has allowed us to care for him at home and has ultimately allowed him to thrive. I feel strongly that others should also have this experience.”

…and never giving up

After 30 years at the hospital, the Burgess family continues to experience breakthroughs.

Lisa had given up on diagnosing Jamie’s underlying disease after six unsuccessful meetings with the Genetics team. But the geneticists hadn’t given up, and on March 13, Jamie was diagnosed as one of only several people in the world with a specific and large deletion on chromosome 10. “Early on doctors felt that he had a hole punched in his immune system and now we know that was absolutely true,” she says. “The diagnosis validates the entire team at Boston Children’s that believed in us.”

There were many years when Lisa would consult with Jamie’s team of physicians three times a day just to keep him alive, and though it’s been 16 years since his last major cardiopulmonary arrest, they still connect weekly to manage his care.

“Jamie’s physicians and nurses have fought and fought and fought for us. They are the dream team. Everyone here has had a hand in our experience – the clinicians, the volunteers, the environmental staff and the administrators. The entire hospital functions as a whole.”

Back at Ryles, Lisa watches Dakota on stage with an enormous smile and a peripheral view always on Jamie. If you had just met Lisa, you might misconstrue her positivity as an affectation. It’s not. It’s genuine Lisa. This isn’t a story about Dakota or Jamie. It’s the story of a mother who fiercely loves her children and advocates for everyone else’s. It’s the story of a woman who is grateful for her family’s messy life and finds the beauty in it every day.

Learn more about the Boston Children’s Family Advisory Council.