Book Review: My Heart Can’t Even Believe It – A Story of Science, Love, and Down syndrome

By Amy Silverman, Woodbine House, 2016, 282 pp.
Book Review by Dotty Robison, Parent of a child with special needs

bookThis book is heartfelt and almost gritty in its honesty. Amy Silverman, journalist and parent of a daughter with Down syndrome, bares her soul in her personal reflections on topics from the moments after her daughter Sophie was born, to thinking back to the weeks before her birth when she knew Sophie might have Down syndrome. Ms. Silverman knew she would not have an abortion and she knew she did not want to be the mother of a child with Down syndrome. She decided to take things as they came, but was determined to get her questions answered.

Silverman described how she focused on the one thing that in the beginning made Sophie stand out from her, her husband, Ray, and her older daughter, Annabelle. They all have curly hair. When she and her husband met with the genetic counselor, the first question she asked was would her baby have curly hair? When she was told no, probably not, that was the beginning of Amy Silverman’s grief. She so wanted Sophie to have curly hair that she could style, fix up, and dress up, just as she did with Annabelle.

Amy sought answers to this question and all her questions from every scientist she could contact. As a journalist, she gained access easier than most parents would have been able to. In addition to the question about why people with Down syndrome almost universally have straight hair, (she never found the answer), she searched for information across the life cycle, from birth, to aging. The information she reports is based mostly on anecdotal information; not on strict science. Sophie has a heart defect and there is a thorough and sometimes graphic explanation of that process which may impact parents as either helpful or frightening.

As a mom, Amy has developed a deep and honest relationship with Sophie. She has moments when she continues to grieve for the baby she did not have. She has grown to know Sophie as a new person, separate from the child she expected. This has enabled the two of them to grow together on this journey of learning about the world; their similarities and their differences in it. There is no doubt that she is a passionate advocate for Sophie. Their relationship is also one of equals, friends, a pair ho, to each other, say what they mean and mean what they say. It’s great to see so much respect between mother and daughter in such a free and refreshing relationship.

I recommend this book to parents at all stages of learning about acceptance of their child with special needs, especially the first two chapters. When parents feel the book is getting too far ahead of where they are, I suggest they put it away for awhile and move ahead at their own pace.