Things would never be the same, Sonja Van Leeuwe said. A little more than two years ago, Sonja and her husband Eric Van Leeuwe welcomed the birth of their daughter Madison, but a rare medical condition cut her life short.
"It changes your life," Sonja Van Leeuwe said of the experience. However, Van Leeuwe said it shouldn't have to be a change someone goes through alone. With that in mind, Van Leeuwe has written a book about her daughter's life. The book, titled "A Balloon in the Snowstorm: Madison's Journey," will be released on Tuesday.
Van Leeuwe says she hopes Madison's story might connect with people or families facing a condition similar to hers.
Photo by Deb Gau
Sonja and Eric Van Leeuwe posed near a garden fountain they keep in memory of their infant daughter Madison. Madison died from a rare medical condition in 2010. Sonja has written a book about Madison’s life, which will be released Tuesday.
"It's like she's helping people even if she's not here," Sonja Van Leeuwe said.
Eric and Sonja Van Leeuwe are rural Ghent residents, and Madison was their first child. Madison was born with a rare genetic condition called a urea cycle disorder, which meant her liver couldn't make an enzyme needed to help break down the proteins in food. Without the enzyme, toxic levels of ammonia start to build up in the body. A liver transplant could cure the condition, but it wasn't possible in Madison's case, the Van Leeuwes said. She died in 2010 at the age of four months.
Sonja Van Leeuwe said the book had its beginnings in journal entries and CaringBridge posts she wrote during Madison's stay at St. Mary's Hospital in Rochester.
"I started a journal when we first got to (the hospital), and I would just write something down every day," she said.
It took some time after Madison's death to decide to put those writings together into a single story and to publish them, Van Leeuwe said. She said she felt a lot of her memories and feelings were private, "But I thought it could help somebody."
Van Leeuwe said the book title, "A Balloon in the Snowstorm," is a metaphor for what Madison meant to her and her husband, as a happy presence in a difficult time. But it also draws on stories from Madison's life. Madison was born during the Christmas snowstorm of 2009, and she loved playing with a bright pink balloon brought in for her when she was in pediatric intensive care, Van Leeuwe said.
Van Leeuwe said she researched publishers before sending a manuscript to Tate Publishing and Enterprises, a Christian publishing company based in Oklahoma.
The writing process also meant talking with Eric and family members and friends, to get their perspective on events in the book.
"We had to kind of put it back together and reconstruct the memories," Eric Van Leeuwe said. Sonja also contacted some of the nurses and doctors who helped care for Madison to get their permission to mention them.
Writing and editing the book meant reliving some difficult memories, the Van Leeuwes said.
"There were times when I would think, 'We really went through that? That was unreal, what she (Madison) went through,'" Sonja Van Leeuwe said.
Van Leeuwe said she hoped the book could reach different audiences of people, but especially people who might be able to gain support or insight from Madison's story.
"It could be young parents," or families of a child with a condition like Madison's, she said. Perhaps medical professionals could learn something about working with families in that situation. "There's not really a book you can read on it."
Van Leeuwe said she hopes to be able to have a book signing in Marshall, although the details will need to be worked out with the publisher.
Van Leeuwe has created a Facebook page, called "Madison's Journey," for her book, and Tate Publishing has a website for it as well, at aballooninhesnowstorm.tateauthor.com/. She said more information about ordering copies of the book is available at both sites.