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What you told your sons about dying

Mar 30, 2014

YOUR RESPONSES TO MY BLOG, TO TELL OR NOT TO TELL were, by turns, honest, sensitive, evasive and surprising.

MISTY VANDERWEELE, who last year lost her beloved Luke to Duchenne, reminded me, quite correctly, that I come from a pre-internet generation when it was easier to protect children from information about the fatal nature of Duchenne. “Now-a-days, kids have social media and the internet. If you don’t tell them, and they live long enough, they will find out the truth. Most families take their kids to MDA clinics once or twice a year. These kids grow up knowing without anyone even telling them. As far as Luke, I never sat him down and said ‘You are going to die.’ How cruel would that be! But he lived long enough so that he and I HAD to discuss how to prolong his life, what he wanted, and even his death. Not fun, but it had to be done to make the best medical decisions for him and his life.”

For those who do not know, PAT FURLONG, the woman who founded Parent Project Muscular Dystrophy almost 20 years ago, and the woman who the New Yorker Magazines profiled in an article called “Mother Courage” (Dec. 20, 2010) lost two sons, Chris and Patrick, to DMD many years ago. She falls between my generation and Misty’s and her remarks to me may reflect that same generational difference. “I could not talk about death, not to Tom (her husband) not to Jenny and Michelle (her daughters) and never to Chris and Patrick.  We lived by a similar motto, pretending we would wake one day and return to the life we had planned. I had a million excuses—bad day, not the right time, too tired, did not want to worry anyone, thought the girls could not handle it…. I could go on forever. Truth of it is, I could not handle it. And to this day, we still don’t talk about IT, but it is always right there. And if Jenny and Michelle talk about Chris and Patrick with others or if they think about them, I’ll never know.”

REBECCA SAULSBURY’S response to my question was short, sweet, and painful, and speaks to the ambiguous emotional territory, that never-never land of subtle often unspoken communication that lies between parent and child. “We waited years until my son was ready to hear the expected end of his story. Then he told us he didn’t want to talk about it. But we have had clear moments of discussing it as closely as he’ll let us. He and I cry together and we both know.”

Patricia Panno Schmidt. One day, without prior warning, when her son Bob was about 11 or 12, he bluntly asked his mother if he was going to die. “I told him that everyone is going to die some time; some people die young, some die old, and others in the middle. Up until the day he died he believed he was going to walk again, and live forever He kept saying ‘When they find a cure I’m going to walk again and get out of this chair.’ I never told Bob it was too late for him.”

LYNDA TUCKER has never had a child with Duchenne, but as the founder of the children’s hospice program at Cincinnati Children’s Hospital where she worked from1994 to 2003, she has “mothered” many terminally ill kids. We spoke on the phone about the importance of trust, and how honest answers helped to create trust.
“Children in clinical settings are amazingly mature, much more savvy than the average healthy child. They know when you’re not telling them the truth.” But what she said next took me totally by surprise. Would you have guessed that while we worry about them, they worry about us? “The best gift a parent can give a child with a dire prognosis is that they, the parents, will be able to carry on without them.” Moreover, she said, “Kids are good at living one day at a time.” Unlike their parents, they tend not to focus on the future, unless it’s to anticipate a special treat, or a trip sponsored by the Make a Wish Foundation. It’s the parents, she says, who create the real ethical dilemmas when it comes to communicating honestly with their children. “We had to move the parents along to make them feel comfortable enough with the diagnosis so that they could feel comfortable discussing the diagnosis with their children.”

BRIAN DENGER, a frequent voice for the DMD community, echoed Lynda’s remarks.

It was the poet Wordsworth who wrote, “The child is father of the man,” and while the poet certainly wasn’t writing about children with Duchenne, his words perfectly describe the Denger’s son Matthew’s behavior during his final weeks. “I believe he was more aware his time was at hand than Alice and I would accept. As much as we wanted to protect him, he, too, was attempting the same tactic with us.”

On a more practical note, Brian and Lynda are also in accord. “I stand by my belief in being honest in an age appropriate manner. When a 4 year-old asks where babies come from, we don’t give him a Masters and Johnson explanation.  I’ve heard parents say they don’t want their son’s doctor or others to say ‘muscular dystrophy’ in front of their child. That degree of protection will backfire once their child learns the reality. Sweeping it under the carpet makes it more difficult later to have what should be a conversation updating their child with what is already familiar to him.”