They've learned to "just let go.... to not plan too much." In just over a year, the family has buried their 10-month-old daughter, Josephine, and welcomed a new baby boy, Christopher. There aren't words to capture the loss of a child or to describe the arrival of this one," says Ed Lampitt. "A year ago, we didn't know, there was this dark spot. Now, here we are with a little bubble of life." For his wife, Claire, "It feels like time has started moving again."
In December 2008, when Josephine was diagnosed with Type II Gaucher disease (lysosomal storage disorder), a rare metabolic disease caused by mutated recessive genes on both sides, the family was devastated. The first symptoms included apparent reflux, unusual eye movements and raspy breathing, followed by increasing difficulty in swallowing and an enlarged spleen and liver. There's no cure and little treatment, and the next couple of months were devoted to keeping Josephine as comfortable as possible during her steady decline. They let her taste ice cream and apples and recorded her delight; they made a book about her for their son Rudy, now 4, to remember the times they shared; they drove the Colonial Parkway to let the road's bumps soothe her; and they held her constantly. They dreaded the nights, but she passed away peacefully during the day on Feb. 16, 2009, naturally, with no tubes, and surrounded by family.
By July, the couple knew that they were expecting again. They had always planned on having a big family with three or four children. They didn't want Rudy to be an only child or to leave him with the idea that siblings die. They talked seriously about adoption, but it was closed to them for a year. Then, Ed says, they opened their hearts to the idea of conception - knowing that this child would have a 25 percent chance of also having Gaucher disease and dying before its first birthday. "Josephine's life was short but it had tremendous value. If we didn't try again it would be almost like saying it wasn't worth it. I wouldn't pass judgment on someone else, but I would do it again. If we didn't it would be because we were too afraid," says Claire.
One test for Gaucher can be made in the first few weeks of pregnancy, but it carries an increased risk of miscarriage. Having suffered two miscarriages prior to Josephine's birth, Claire opted instead for the less risky amniocentesis at 16 weeks. Neither would consider terminating the fetus anyway. "We knew we would have the baby no matter what," says Claire. "It wasn't a matter of getting quick results, we had made the decision. We have an old-fashioned trust in God."
In October, four weeks later, when they called to get the test results, they knew that they could be facing another funeral in a year. "We weren't afraid because we had made the decision. ...We've both been confused, but we've never disagreed. We share the same values," Ed says in an echo. They knew immediately by the tone that all was well. "It was probably one of the most powerful experiences," he concedes. "It was incredible," she adds.
Just as they found they couldn't prepare for their loss, so Christopher's arrival on Feb. 26, 2010, has brought some surprises. "It's a conflict of emotions. I didn't expect he'd look so like Rudy. I'm having flashbacks," says Claire, noting his shock of dark hair. "He has some of the same way of doing things. Some of his traits are the same." She has also had to do some things she hadn't felt ready to do. Like going through cabinets that have Josephine's clothes in order to find burp cloths and blankets. "Out of necessity I've had to do the things I was trying to avoid," she says. "I love going through the boxes, but I have to be emotionally prepared."
Their joy at welcoming a new son has been tempered by their experience. "My definition of joy will never be the same - the elation and expectation. I've lost that naivete and that innocence. That's OK. I feel what I'm capable of feeling. It's just our grief is so fresh. It could be yesterday," she says. As they left the hospital with Christopher, Ed took a picture, capturing a local magazine cover and his story, "Remembering Josephine" in the frame. On their way home, they stopped off at the cemetery to visit her grave. "This is our team, and one of us isn't here," is how he characterizes it. They're grateful for Rudy's natural acceptance, "Now we have five people in our family." With the help of professional counseling they've learned that there's no rush to put away Josephine's things, no timeline, no one way to grieve.
"I don't know. We reserve some part of us that something could go wrong. I certainly feel better being home, getting to know him. He's doing all those baby things. He's going to be OK," says Claire.
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Type II Gaucher disease (pronounced "go-shay) affects 1 in 100,000 infants; the average life span is 9 months.
For more information, or to donate, send to Children's Gaucher Disease Research Fund, P.O. Box 2123, Granite Bay, CA. 95746; www.childrensgaucher.org.
Persevering through the pain of losing a child to Gaucher's disease
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