My Daily Domestic Diigolet 03/26/2008

The U.S. school system was modeled
after German schools created in the 1800’s for the express purpose of producing obedient
soldiers and factory workers (This is true!  I’ve read it in many different good
sources). The German system was extremely successful in achieving its goal in Germany and
was therefore copied by other countries, including the U.S.   The great American
tycoons and Robber Barons were big supporters of the German system in America since they
wanted literate but obedient factory workers.  Our schools are operated pretty much
the same way today in the 1990’s as they were back when Thomas Edison was kicked out for
being “addled.” Creativity and independent thought and action were discouraged
because such traits were problematic in a war or a factory.  Today these traits
interfere with our cookie cutter, mass production educational system; a bureaucratic
system which is unable to change itself.

Three and a half months before he was born, Kuebelbeck found out that Gabriel had an incurable heart condition and would die soon after he was born. She and her husband decided to fill their pregnancy with things they once hoped to introduce Gabriel to in the years following his birth.

“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.

“Robbie taught us to love what we have, when we have it, because time is measured,” Steve said in the eulogy he delivered at his son’s funeral. “Robbie has taught us to hold on tight — and to let go.”

As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.

In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.

Studies don’t specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld’s experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.

However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering? But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.

When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby’s hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.

Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.

Courtesy of Deibert family Robbie Deibert, the day he was born.

Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.