Before Amy Silverman gave birth to her second child, Sophie, she had never even met anyone with Down syndrome. That changed abruptly when Sophie was diagnosed with the genetic disease shortly after her birth in 2003. And on the heels of that diagnosis: Sophie had a congenital heart defect that required open heart surgery.
After learning that Sophie had Down syndrome, Silverman, who is managing editor of Phoenix New Times, “retreated into the bliss of ignorance.” She focused on Sophie’s day-to-day care and avoided learning more about Down syndrome. Her husband, Ray Stern, also a journalist at Phoenix New Times, took a different tack. He immersed himself in research.
When Silverman emerged and “decided that it was time to figure things out,” she realized the book she wanted to read didn’t exist, so she set out to write her own: “My Heart Can’t Even Believe It.” The title comes from a video message left by Sophie on Silverman’s cell phone in which she declares, “I love you so much, my heart can’t even believe it.”
Silverman will hold a launch party at Changing Hands Bookstore in Tempe on Sunday, May 1 (see details box).
The book, which Silverman wrote over a 10-year period, reveals a brutally honest and personal account of parenting a child with Down syndrome and includes plenty of self-deprecating as well as humorous moments.
For a long time, Silverman didn’t tell anyone that she was working on a book. “I told Sophie when I told my husband and the rest of the family because she’s not the best secret keeper in the world,” Silverman jokes.
When Sophie was 5, Silverman started a blog titled, “Girl in a Party Hat,” where she chronicles life with Sophie. In the book, Silverman incorporates some of the blog’s stories as well as scientific and factual information she gathered over her 10 years of research. She masterfully weaves her personal story with the technical details.
“My real goal was to make it personal and general at the same time because those are the stories that I’m drawn to the most,” she says. “I wanted to write a book that was accessible.”
Silverman peppers the narrative with anecdotes about Sophie that are equally heart-wrenching and uplifting. She writes about searching for inclusive schools; Sophie’s participation in Special Olympics and dance; how to navigate puberty with a child with Down syndrome; and ultimately Sophie’s realization that she’s “tired of having Down syndrome.” But the most powerful moments come when Silverman bares her darkest fears and hopes for Sophie’s future, with keen insight that only a mother can possess.
Putting on her journalist hat, Silverman reports on genetics, the correlation between Down syndrome and Alzheimer’s disease later in life, IQ testing and a host of other topics. She also devotes time to discussing the disparaging language and terminology surrounding disabilities. “I wanted it to be a broad brush on a lot of different topics.”
Silverman didn’t write the book as a guide for parents with Down syndrome. “I’m not going to tell anyone what to do. Every kid is different and they tend to have strengths in different areas,” she says.
Today, Sophie is in seventh grade and Silverman says that middle school is going “really, really” well. “She’s happy. She has a few friends and she’s on the cheer squad,” Silverman says. Sophie and her 15-year-old sister, Annabelle, are busy preparing for their b’not mitzvah in November. They’re working with a tutor to prepare for the ceremony that will take place at Beth Hebrew Synagogue in Phoenix.
Silverman says it was surreal to finally see the book in print after working on it for a decade. “I am so incredibly grateful for the support that I’ve gotten across the board. And it’s so much fun to see how excited Sophie is.”
Read Silverman’s blog at girlinapartyhat.com.
What: Book launch party
Who: Amy Silverman
When: 3 p.m. Sunday, May 1
Where: Changing Hands Bookstore, 6428 S. McClintock Drive, Tempe
Cost: Free. Book is $22.