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Elizabeth Silver writes book about year without diagnosis for daughter

In “The Tincture of Time: A Memoir of (Medical) Uncertainty” ($27, Penguin Press), Elizabeth L. Silver writes about the year following the day her 6-week-old daughter had an unexplained brain bleed. It’s a year of uncertainty, of never knowing if and when it would happen again. A year of not knowing what the short-term and long-term effects of a brain filling with blood would be. Would she walk? Would she talk?

Silver began writing about the experience as it was happening to try to make sense of it. She documented what was happening, often writing down medical terms doctors were using to look them up later. And she gave the doctors a lot of information on what her daughter was like before and what she was like now.

“As a baby, she can’t tell a doctor what is happening,” Silver says. “As her mother, I realized that I was the next best thing.”

It’s a story of wrestling with what doctors know versus what they don’t know. It’s about wrestling with fear and worry and learning to eventually let that go, too. It’s about trusting your instinct of knowing something is really wrong, something has changed, and the only way to know that is to really know your child.

For Silver, one day her daughter’s cry became quieter and she vomited for 24 hours. Her arm started to twitch. They went to the emergency room and headed down a path that would include days in the neonatal intensive care unit, cranial ultrasounds, multiple blood tests, many failed attempts at a diagnosis, MRIs every three months and multiple rounds of physical and occupational therapy.

Silver, who attended the University of Texas as well as served as a judicial clerk here before moving to Los Angeles, will return to Austin on Monday to read from and sign the book in a conversation with Austin author Amanda Eyre Ward.

“Tincture of Time” is this phrase that doctors use to basically mean “we have to wait and see.” In other words, we’re not really sure what might happen, but hopefully the body will heal itself.

“Waiting for time to pass, it’s like you’re at sea and you don’t know when you’re going to be rescued,” she says.

Silver wants other parents to know that they are not alone. She went through it. She handled the uncertainty by trying to read everything she could on brain bleeds so she was informed, but one thing she tried to avoid was looking at all the statistics of how bad long-term it could have been.

“Statistics can be quite scary things,” she says. “If there’s a 90 percent chance of things going wrong, you ignore the 10 percent chance of things going right. You can’t focus on them too much or we’ll go down a rabbit hole and get lost in a rabbit hole.”

Even though her father, sister and husband are all doctors, Silver realized that doctors didn’t always know why these things happen. In fact, one thing that was comforting was doctors would tell her they were up all night thinking about her daughter, trying to figure out what happened.

She does talk about the multiple times people came in to question her and her husband to try to rule out child abuse, which they eventually did.

Where she felt fear about what was happening to her daughter, doctors found a challenge. “It really reflects that awareness that medicine isn’t going to provide all the answers,” she says. “That’s what draws (doctors) to it.”

In the end, her daughter is now a perfectly healthy, smart 3 1/2-year-old with an 11-month-old brother. Yet, the experience has made Silver on higher alert as a parent than she thinks she would have been. She’s always looking for something. One thing that is comforting is that because her daughter has had so many therapies and so many tests, she knows where she stands intellectually without a doubt. While other parents might think their children are smart, Silver has the test results to prove it.

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