Families with a Missing Piece

As many of your know, I worry that adults in the CF community focus more on their own wants and needs when it comes to the decision of having a child (as a CF parent) as opposed to what is best for the kid.

Yes, life expectancy is increasing with CF, but still we know adults die in their 20s, 30s and 40s, well before a child with a CF parent is grown.

I have heard many times "oh we have a lot of family around who can help care for the child if I die." I think these CFer's underestimate their worth to their children - nothing replaces a parent.

I often think of Jazzy, Mels' daughter, and how she must be feeling since her mom's passing. How devistating for this poor little girl to loose her mom.... it just breaks my heart.

And no, having CF isn't the same as cancer or suddenly being hit by a car. Your chances of dying from CF are much higher than the average parent being killed by cancer or being hit by a car. CF is known, prior to pregnancy (of course if you find out later you have CF after a child is born, this doesn't pertain to you).

Here is today's article from the WSJ that I feel should be required reading for all CFer's who want to be parents... the focus on the decision needs to be all about the child.




MOVING ON JUNE 2, 2010

Families With a Missing Piece
A New Look at How a Parent's Early Death Can Reverberate Decades Later

By JEFFREY ZASLOW

For adults who were children when their parents died, the question is hypothetical but heartbreaking: "Would you give up a year of your life to have one more day with your late mother or father?"

One in nine Americans lost a parent before they were 20 years old, and for many of them, this sort of question has been in their heads ever since.

"I'd give up a year of my life for just half a day with my parents," says Jonathan Herman, a 33-year-old health-care executive in New York. He lost both his parents to cancer before he was 13. "I've had friends complain that they have to drive to see their parents for Thanksgiving," he says. "I tell them: I'd do anything to spend Thanksgiving with my parents."

When polled, 57% of adults who lost parents during childhood shared Mr. Herman's yearnings, saying they, too, would trade a year of their lives. Their responses, part of a wide-ranging new survey, indicate that bereavement rooted in childhood often leaves emotional scars for decades, and that our society doesn't fully understand the ramifications—or offer appropriate resources. The complete survey of more than 1,000 respondents, set for release later this month, was funded by the New York Life Foundation on behalf of Comfort Zone Camp, a nonprofit provider of childhood bereavement camps.

Among the findings: 73% believe their lives would be "much better" if their parents hadn't died young; 66% said that after their loss "they felt they weren't a kid anymore."

Childhood grief is "one of society's most chronically painful yet most underestimated phenomena," says Comfort Zone founder Lynne Hughes, who lost both her parents before she was 13. She says she is worried that educators, doctors, and the clergy get little or no training to help them recognize signs of loneliness, isolation and depression in grieving children—and in adults who lost parents in childhood.

Students are often promoted from grade to grade, with new teachers never being informed that they're grieving. Adults visit physicians, speak of depression, but are never asked if a childhood loss might be a factor.

New research suggests it's time to pay closer attention. Children whose parents commit suicide, for instance, are three times as likely to commit suicide later in their lives, according to a just-released study by Johns Hopkins Children's Center in Baltimore. The study also found that those who lost parents young are more likely to be hospitalized for depression or to commit violent crimes.

In the 2009 memoir "The Kids Are All Right," four siblings from Bedford, N.Y., orphaned in the 1980s, described the risks in harrowing detail. They wrote of "growing up as lost souls," and turning to drugs and other troubling behaviors as coping mechanisms.

It's a common story. Gary Jahnke, 31, of Hastings, Minn., was 13 when his mother died of cancer. "I gave up on my good grades and dropped out of high school," he says. "I didn't do anything except drink, do drugs and be depressed. I was confused and angry, and adults didn't know how to help me. I had a good relationship with my dad, but he was also grieving." Mr. Jahnke credits his wife with helping him on his "upward climb," and says his 2-month-old daughter has given his life purpose.

Support groups, which grieving adults often find helpful, seem less beneficial to bereaved children, says Holly Wilcox, a psychiatric epidemiologist who led the Hopkins study. Children are more apt to be buoyed by engaging in normal kid activities with supportive peers, and by receiving attention from adult relatives or friends who encourage them to talk about their feelings.

At the same time, the mental-health issues of grieving kids need to be better monitored by primary-care physicians in the days, months and years after their parents die, Dr. Wilcox says.

When surveyed about how they processed their grief, adults whose parents died when they were young speak of touchstones. They were helped by looking at old videos with surviving family members, by listening to favorite music and by writing memories of their parents in journals. Some chafed at more-formal approaches; 33% said talking to therapists or school guidance counselors were the "least helpful" activities.

The early loss of a parent can make some people more resilient, responsible and independent, the research shows. But there are risks there, too. Kids who get through by being stoic and behaving like adults often "pay a fierce price—namely their childhoods," says Ms. Hughes. They focus on trying to keep their surviving parent happy or on stepping up to handle the responsibilities of their deceased parent.

Donica Salley, a 50-year-old cosmetics sales director in Richmond, Va., understands well the ramifications of losing a parent. When she was 13, her 44-year-old father drowned while on vacation in the Bahamas. "That was the onset of my depression," she says. "My mom tried to fill the void and the hurt by buying me things."

Two years ago, Ms. Salley's husband died after falling off the roof of their house while cleaning the gutters. He was also 44. Their 17-year-old son has since attended a Comfort Zone camp. "It's a safe haven for him," Ms. Salley says. "There's something about being with people who've been through it. When my father died, I didn't know anyone who'd lost a parent. I was alone."

The weekend bereavement camps, held in five states and serving 2,500 children a year, are designed "to catch kids at the beginning of their grief journeys," Ms. Hughes says. About half of the camp's 5,000 volunteers are adults who lost parents when they were young.

Christopher Blunt, an executive at New York Life and a camp volunteer, was 22 when his mom passed away. He tells of leading a "healing circle" discussion with eight campers, as they shared how their parents died—to suicide, a drug overdose, cancer.

One 10-year-old girl told the others about a day when she was 5 years old and got mad at her father. He came into her bedroom to kiss her good night, and she pretended she was asleep because she didn't want to talk to him. He died of a heart attack the next day. "She'd been carrying this story with her for five years," says Mr. Blunt, 48. "It's so powerful to see the raw emotions these kids share."

Some activists say it's vital to start helping young people even before their parents die. To that end, the Georgia-based Jack & Jill Late Stage Cancer Foundation provides free vacations to families in which one parent is terminally ill. The organization was founded by Jon and Jill Albert, shortly before Jill's 2006 death to cancer at age 45. Their children were then 11 and 13.

"When Jill passed away, people who lost parents when they were young told me it would be a 30-year impact for the kids," says Mr. Albert, 48. His organization, with the help of corporate sponsors, has sent 300 families on vacations.

"These trips allow families to build memories, and to take a lot of pictures and videos together," says Mr. Albert.

After their parents die, some of the children might find it painful to look at these last photos of them enjoying life as a family. But Mr. Herman, who lost his dad when he was 4 and his mother when he was 12, says such images can be a gift later in adulthood. For years, he resisted watching the video of his 9th birthday. But he now finds it cathartic to see his mother healthy, hugging him and calling his name.

"I haven't heard my father's voice since I was 4 years old," he says. "It doesn't exist [on tape]. It hurts not to hear him." He admits he feels a touch envious of children who lose parents today, because they have so many more digital images to hold on to.

For many who lost parents young, one particular birthday in their adult years is highly anticipated—and bittersweet. "My mom was 44 when she died. My dad was 45," says Ms. Hughes. "I just turned 46 in April, and it was a huge exhale for me. I had to live to 46 to break the curse."

Ms. Hughes, who has two young children, says she has made progress in dealing with her loss. She no longer fantasizes about giving up a year of her life for a day with her parents. "I wouldn't want to miss a year with my own kids."

Write to Jeffrey Zaslow at jeffrey.zaslow@wsj.com

http://online.wsj.com/article/SB10001424052748704875604575280400596257236.html?KEYWORDS=early+death