Martha Pauly with her son Andrew Paukstitus and daughter Megan Paukstitus.
Mom dilemma No. 9,786: The son wants a tattoo.
But the question was all kinds of messy for Martha Pauly.
This wasn't about aesthetics. This wasn't a taste or a class thing.
The tattoo question went to the heart of Pauly's parenting dilemmas, from that first moment when they gave her the news about her son at the hospital, to the last decision she made by his bedside.
How much should she protect his fragile health? And how much should she let him live it up, seize the day, carpe diem?
Because every day really could be his last. He knew it. And she knew it. Now Pauly, a 62-year-old social worker who lives in Falls Church, Virginia, is facing her first Mother's Day without him.
Andrew Paukstitus was not all that unusual when he was born 30 years ago, because 1 in 110 babies are born with a heart defect.
Until doctors started performing open-heart surgery on newborns, only about a quarter of those infants, known as "blue babies," survived. Once those surgeries became common and successful, about 95 percent of children with congenital heart defects - such as Olympic snowboarder Shaun White - grew up and moved on.
Paukstitus grew up, but he couldn't move on.
His single ventricular transposition of the aorta meant that he would endure seven surgeries in his life. It was a complex set of heart anomalies that very few infants survived at that time.
It meant he couldn't play sports. That he'd spend at least one of every major holiday in the hospital. That the metal in his chest would set the airport security alarm off every time. That he'd have to stick with pediatric doctors at Children's National Medical Center in Washington, who didn't think he'd live to 15.
Pauly spent so much of her early motherhood at the hospital. She and her husband divorced soon after their second child, Megan, was born when Paukstitus was 5. And she single-parented most of it.
All three of them had to learn resilience and flexibility. Because so much of the time, they felt so alone - medical pioneers.
"The disease as an adult is completely different than the other kinds of heart disease adults get," his pediatric cardiologist at Children's Hospital, Karen Kuehl, told the Associated Press a decade ago when she helped open one of the nation's few specialty clinics for adults with congenital heart disease.
Paukstitus's treatments became part of this growing body of research, how to help adult congenital heart patients transition their hearts into middle age.
He went to medical conferences with his mom. And he lobbied on Capitol Hill for more funding for research. He raised funds every year at the Congenital Heart Walk in Washington. They were "Team Pauk," the shirts with the picture of that tattoo he asked his mom to let him get at 18.
The tattoo.
"How much do I bubble wrap him, and how much do I just let him do it?" was what Pauly asked herself and the doctors so many times.
She knew most doctors would say "no way" to the tattoo, that it was way too risky for someone who knows the entire ER staff on a first-name basis.
But she knew he had an enormous zest for life and would probably get that tattoo no matter what anyone said. "It was just one more normal thing he had to do," Pauly explained.
He designed it himself, then had an artist help him. It's a juicy red heart with laces, like a sneaker, unstitched.
"Then he got his actual EKG - which was very weird - across his chest," she said. (She calls it "ewww.") And he got another heart with his mom's and sister's initials inside. (She calls that one "awww.")
He had a retail job working in technology, he got his own apartment, then he found his true love, phlebotomy, and became one of the most beloved blood collectors on a Virginia blood mobile.
His sister Megan, 26, a veteran of hospital visits, became a cardiac nurse.
Toward the end of last year, right after Pauly arranged and escorted a crazy 30th birthday party trip to Las Vegas, she could see he was getting sicker.
He died on Jan. 10, at Children's Hospital.
A week ago, Pauly did her first congenital heart walk without him.
"I know some of those other people, seeing me, seeing me without Andrew, that's not what they want to see," she said. But she went, and his team raised $25,000.
"This fills my heart and breaks my heart," she said.
On Sunday, she will mark Mother's Day without him, mourning his death but celebrating his life.
"I knew from the beginning that he would probably die before I did," she said. "So I adopted a philosophy for us to live by. That philosophy was very simple - live life."
© 2016 The Washington Post
(This story has not been edited by NDTV staff and is auto-generated from a syndicated feed.)
But the question was all kinds of messy for Martha Pauly.
This wasn't about aesthetics. This wasn't a taste or a class thing.
The tattoo question went to the heart of Pauly's parenting dilemmas, from that first moment when they gave her the news about her son at the hospital, to the last decision she made by his bedside.
How much should she protect his fragile health? And how much should she let him live it up, seize the day, carpe diem?
Because every day really could be his last. He knew it. And she knew it. Now Pauly, a 62-year-old social worker who lives in Falls Church, Virginia, is facing her first Mother's Day without him.
Andrew Paukstitus was not all that unusual when he was born 30 years ago, because 1 in 110 babies are born with a heart defect.
Until doctors started performing open-heart surgery on newborns, only about a quarter of those infants, known as "blue babies," survived. Once those surgeries became common and successful, about 95 percent of children with congenital heart defects - such as Olympic snowboarder Shaun White - grew up and moved on.
Paukstitus grew up, but he couldn't move on.
His single ventricular transposition of the aorta meant that he would endure seven surgeries in his life. It was a complex set of heart anomalies that very few infants survived at that time.
It meant he couldn't play sports. That he'd spend at least one of every major holiday in the hospital. That the metal in his chest would set the airport security alarm off every time. That he'd have to stick with pediatric doctors at Children's National Medical Center in Washington, who didn't think he'd live to 15.
Pauly spent so much of her early motherhood at the hospital. She and her husband divorced soon after their second child, Megan, was born when Paukstitus was 5. And she single-parented most of it.
All three of them had to learn resilience and flexibility. Because so much of the time, they felt so alone - medical pioneers.
"The disease as an adult is completely different than the other kinds of heart disease adults get," his pediatric cardiologist at Children's Hospital, Karen Kuehl, told the Associated Press a decade ago when she helped open one of the nation's few specialty clinics for adults with congenital heart disease.
Paukstitus's treatments became part of this growing body of research, how to help adult congenital heart patients transition their hearts into middle age.
He went to medical conferences with his mom. And he lobbied on Capitol Hill for more funding for research. He raised funds every year at the Congenital Heart Walk in Washington. They were "Team Pauk," the shirts with the picture of that tattoo he asked his mom to let him get at 18.
The tattoo.
"How much do I bubble wrap him, and how much do I just let him do it?" was what Pauly asked herself and the doctors so many times.
She knew most doctors would say "no way" to the tattoo, that it was way too risky for someone who knows the entire ER staff on a first-name basis.
But she knew he had an enormous zest for life and would probably get that tattoo no matter what anyone said. "It was just one more normal thing he had to do," Pauly explained.
He designed it himself, then had an artist help him. It's a juicy red heart with laces, like a sneaker, unstitched.
"Then he got his actual EKG - which was very weird - across his chest," she said. (She calls it "ewww.") And he got another heart with his mom's and sister's initials inside. (She calls that one "awww.")
He had a retail job working in technology, he got his own apartment, then he found his true love, phlebotomy, and became one of the most beloved blood collectors on a Virginia blood mobile.
His sister Megan, 26, a veteran of hospital visits, became a cardiac nurse.
Toward the end of last year, right after Pauly arranged and escorted a crazy 30th birthday party trip to Las Vegas, she could see he was getting sicker.
He died on Jan. 10, at Children's Hospital.
A week ago, Pauly did her first congenital heart walk without him.
"I know some of those other people, seeing me, seeing me without Andrew, that's not what they want to see," she said. But she went, and his team raised $25,000.
"This fills my heart and breaks my heart," she said.
On Sunday, she will mark Mother's Day without him, mourning his death but celebrating his life.
"I knew from the beginning that he would probably die before I did," she said. "So I adopted a philosophy for us to live by. That philosophy was very simple - live life."
© 2016 The Washington Post
(This story has not been edited by NDTV staff and is auto-generated from a syndicated feed.)
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