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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome

Schlegel, Sarah, MD*,†

Journal of Developmental & Behavioral Pediatrics: January 2018 - Volume 39 - Issue 1 - p 36
doi: 10.1097/DBP.0000000000000526
Book Reviews

*Developmental-Behavioral Pediatrics, Connecticut Children's Medical Center, Hartford, CT

Department of Pediatrics, University of Connecticut School of Medicine, Farmington, CT

Disclosure: The authors declare no conflict of interest.

In the introduction to her contemporary memoir about having a daughter with Down syndrome, journalist Amy Silverman initially recounts a fond memory of her nearly 10-year-old daughter stating in a cellphone video to her, “I love you so much my heart can't even believe it.” Yet, just 3 short paragraphs later, Silverman delineates a very distant starting point in the journey to understanding and appreciating her daughter, Sophie, that she describes in her book when she writes, “In fact, Sophie is the first person with Down syndrome I ever met. Which wouldn't have been so awkward if she wasn't my daughter.”

It is in that candid, genuine, and sometimes gently sarcastic voice that Silverman relays her experience of learning of and about her daughter's condition. Silverman's writing is “fiercely honest” (per reviewer Kristin Gilger) and raw, personable, and relatable; she is not afraid to ask questions and, in the manner of a close friend, openly admits to her own ignorance before the birth of Sophie. She adeptly blends journalistic sections into her casual novel-like narrative, and both styles are easy and enjoyable to read; the book is very engaging overall. Although it loosely follows Sophie's growth, it is much like a scrapbook: accounts of meaningful moments interspersed with interesting journalistic research blurbs and complete with sporadic natural photographic snapshots as the beginning of each chapter; in fact, the book reads much like a very long article from The New Yorker. Filled with “enormous helpings of determination” (per reviewer Laurie Notaro), it is thoughtful and thought-provoking.

Silverman (now “an unabashed fan of her daughter,” as per reviewer Quinn Cummings) describes her initial disconnect, finding Sophie to be a “foreign creature,” so unlike her parents and older sister. She explains how difficult it was to notify family and friends that Sophie had Down syndrome. Silverman recounts her experiences handling Sophie's associated medical problems, such as feeding difficulties requiring chronic nasogastric feeding during infancy and an atrioventricular septal canal defect requiring cardiac surgery.

She describes the presentation of Sophie's developmental delays and how she advocates for her daughter's participation in school and extracurricular activities in the least restricted manner possible, but also with necessary supports, modifications, and accommodations. Silverman often alludes to how having Sophie helped her stop herself and others from using the term “retard” pejoratively, and at 1 point even examines the sociolinguistic history of the term.

Understandably, Silverman often pursues greater knowledge about her daughter's condition from a journalist's perspective. She explores history and current research in Down syndrome and developmental disability. She critiques support networks for families of individuals with special needs. She investigates the Special Olympics and, as related to Down syndrome, cardiac defects and surgery, genetics, cognition, puberty, and Alzheimer disease.

Truly “a story of science, love, and Down syndrome,” this collection of memories and data accumulated by Silverman depicts how she defines her daughter Sophie in the context of Down syndrome. Yet, while this book may be most salient to parents of children with Down syndrome, it is without doubt that parents of children with any developmental disabilities would be able to find some connection to Silverman's experiences, and any provider to those with disabilities could certainly be enlightened by it.

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