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понедельник, 1 декабря 2014 г.

Dad facing cancer finds heaven on earth by living in the present

Julie Scharper    
                                                                             
Baltimore Sun


BALTIMORE — Oren Miller's children — 6-year-old Liam and 4-year-old Madeline — lean in close as they play Chutes and Ladders with their dad.
"OK, Madeline, you're at 42. Count forward six," he says, his voice gentle.
He is wearing three layers despite the warmth of the kitchen of his Owings Mills, Md., home. He is always cold these days. He has lost 40 pounds since May, when he was diagnosed with cancer.
He went to get checked for shortness of breath and pain in his back. Doctors told him he had fluid around his lungs, a clot in his heart. And then, lung cancer.
It had already spread to his liver, his lymph nodes and his brain by the time he was diagnosed. He had a year to live, a doctor said. Maybe more if doctors found the right treatment.
Miller is 41. He has been a stay-at-home dad since his wife, Beth Blauer, gave birth to Liam. He has chronicled the life of his family on his blog, A Blogger and a Father.
He is also the founder of a group of more than 900 dad bloggers. They have rallied around him, drumming up encouragement and organizing an online fundraiser. After Miller's health forced him and his wife to skip a long-awaited concert, the dads filmed themselves singing Billy Joel tunes for the couple.
Miller blogged about his diagnosis from his hospital bed in June, a post that has been shared tens of thousands of times.
He wrote about a revelation he had several years ago, driving home from the beach. He had just spent a vacation distracted by emails and blog posts.
"I realized I had been experiencing the biggest tragedy of human existence: I was having the time of my life, and I didn't even know it," he wrote. He decided then to burrow into the joy of the present.
"I believe in Heaven on Earth," he wrote. "It's found anywhere you seek it."
The hardest part is imagining his children growing up without him.
He has been their primary caretaker since infancy, walking them to the playground, hugging away tears, sipping cups of pretend tea.
Now he no longer picks the children up from school.
"I was with them the whole time, but now I can't do much with them," he says.
Blauer has cut back on work, and her mother has moved in to help.
On this November evening, the family is at home. The kids play with their dad as their mom cooks. Madeline wants to give a concert after dinner. Liam writes out tickets for the show.
The children try to make sense of what is happening to the man they call Aba, the Hebrew word for father. Miller grew up in Israel and speaks Hebrew with them.
Madeline strokes his arm. She has an intuitive understanding of her father's illness, her parents say.
Liam buried his feelings for a long time.
Then recently something clicked, Blauer recalls.
She and Liam were sitting at a tiny table at Target, eating a cookie.
"Ima," the boy asked, using the Hebrew word for mother. "Is Aba going to die soon?"
Yes, she said. Yes, he probably will.
"How soon, Ima? When he is 70?"
"Sooner than that. Probably when he is 41 or 42."
"But, Ima, he's 41 right now."
Since then, there have been more worries and tears, Blauer says. Liam wonders who will teach him to drive. How can he grow up without a dad?
Blauer, a Montgomery County native and the former head of StateStat, Maryland's open data program, is warm and open, a natural-born leader. For the past two years, she has worked for a company called Socrata, traveling to other cities and states to help them make data public.
She met Miller in a London pub 17 years ago. He was living in London, playing in a rock band. She was on a post-college trip to Europe. She knew instantly she wanted to marry him.
The couple lived in Brooklyn, then moved back to Maryland. Blauer graduated from law school; Miller got a degree in creative writing. Liam was born in 2007, Madeline in 2010.
A video of those days shows Miller teasing a giggle from an infant Madeline, then hurrying to check on Liam, a toddler, on a tricycle.
Miller cherishes these years.
"There are little tiny changes you notice because you're home," he says.
Miller also began A Blogger and a Father. At first, he primarily used his site to highlight dad bloggers he admired.
He also called out advertisers for perpetuating stereotypes of bumbling fathers. Then he began sharing his thoughts on raising children. His tone is gentle, self-deprecating, edged with dry wit.
In December 2012, Miller formed the Facebook group "Dad Bloggers." There were about 15 at first. The group has now grown to 900 members from 15 countries.
"He took it upon himself to become a fulcrum of the community," said Carter Gaddis, a 45-year-old blogger from Florida.
The Facebook group has become a sort of barbershop, Gaddis said, a place where men debate the questions that frame their lives.
This spring, word spread quickly of Miller's diagnosis. The other fathers wanted to help.
"Dads like to fix things," said Brent Almond, a blogger from Montgomery County. He took the lead on creating a fundraising website for the family that generated $34,000 in three months.
The dads rallied again when they learned that Miller and Blauer were missing a Billy Joel concert in Madison Square Garden.
They recorded themselves covering Billy Joel songs and posted a compilation to YouTube. The fathers sang from their kitchens, garages and bathrooms. There were two parodies of "Piano Man."
Some played the guitar. One played an accordion. Some has beautiful voices; others were comically off-key. Many of them said, "I love you, buddy."
Chris Routly, a blogger from Portland, Ore., sang Joel's "Lullabye": "Good night my angel, now it's time for sleep. And still so many things I want to say."
An initial round of chemotherapy shrank some tumors but caused Miller to break out in a rash. He started an additional chemotherapy in November to control tumors on his liver.
Miller has written letters for his children to open on their birthdays, in case he is not there. There is one for Liam to read in December, when he turns 7. The other is for Madeline to read in March on her fifth birthday.
Miller is down to the weight he was in his 20s, when he completed his mandatory service with the Israeli army. It was in the military that he started to smoke, a habit that stuck with him for 12 years, until he and Blauer decided to start a family.
Miller feels that lung cancer doesn't get as much attention as other cancers because many dismiss it as "a smoker's disease." But more people in the U.S. die of lung cancer than of any other kind of cancer.
Ashley Helgeson, a friend of the couple and a cardiology fellow at Johns Hopkins Hospital, was present when doctors viewed the many tumors on Miller's CAT scan.
"We were all crying in clinic," said Helgeson, a former neighbor.
Miller was stoic when doctors told him his diagnosis. Helgeson visited him later in his room to see how he was holding up.
"Those conversations I will never forget," she said. "He has such an amazing outlook. His biggest concern was his family. He said, 'Even if I die of this, I've lived heaven on earth.'"
Miller has been spending more time in the bedroom lately. It's warmer there. The chemo makes him tired; it's harder to stay optimistic.
"I wish I did believe I could sit on a cloud and look down and send signs to my kids," Miller says. He does not believe in an afterlife.
"I believe in what remains, in memory," he says. "That has to be good enough."
What Liam and Madeline will have, always, is what their father has taught them. They will have memories of their father nurturing them, trying to teach them to be empathetic, open-minded, brave.
And they will have the records he has crafted of their childhoods. He details on the blog Madeline's first wobbly steps, the love he felt as she tottered into his arms. He writes of watching Liam run around a playground, thinking about all the joys and heartaches the boy will face in the years ahead.
The other dad bloggers say they, too, have been shaped by Miller. He set the tone of the group, introduced them to good friends.
And his message to cherish the present has hit them hard.
"I think of Oren and what he's going through and how he would give anything for more time with his kids," said Aaron Gouveia, a Massachusetts dad blogger. "I try to realize how lucky I am and not get bent out of shape over every little thing."
After dinner, it's time for Madeline's performance. The children usher everyone into the sun porch. Blauer and her mother sit on the sofa.
Miller stands nearby in the kitchen. The sun porch is drafty — too cold for him.
Liam lies on the floor of the sun porch writing out division problems. His dad taught him how to divide 10 by 2, and he figured out the rest of division from there.
"So your dad taught you then," his grandmother says.
"He taught himself," Miller says.
"Ladies and gentlemen, boys and girls," Madeline says into a karaoke microphone. "Now I will dance."
Miller puts on "Dancing the Night Away" a bass-heavy rock song by The Motors, a 1970s London band.
Madeline twists the hem of her shirt, suddenly shy. Her mother and grandmother offer encouragements.
Miller comes then and takes his daughter's hands. She grins; he twirls her round and round.
Then he steps aside, slipping out of the chilly room.
Madeline spins, leaps and continues her dance.

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