My Heart Can’t Even Believe It
Reading Amy Silverman’s memoir, “My Heart Can’t Even Believe It” is like spending time with a best friend who knows she doesn’t have to censor her thoughts. At the start of the book, Silverman looks at her new baby girl who probably has Down syndrome despite a previous negative ultrasound and hopes quite fervently that this baby will have the family’s trademark curly hair. “But what about Sophie--so tiny in her carrier, with straight black hair and a feeding tube up her nose, chromosomally challenged and days away from open-heart surgery?” Ms. Silverman writes. “Would her hair ever curl?” It is here that I realized Silverman would tell me the truth about what it felt like for her to have a baby with Down syndrome. There would be no pussy footing around and claiming she was glad her child had Trisomy 21.
She hooked me right there as well because I was that woman too, that one who was excited my child had blue eyes while I waited to see if my premature baby would need open-heart surgery. It’s hard to let yourself think about the bad things when you’ve just been given this baby. It’s a whole lot easier to think about the normal things everyone else thinks about at that point. Ms. Silverman opens up a part of herself most people keep tightly covered. She shares how she once used the word retarded, but now finds ways to tell people not to use it. She goes on to share secrets about what it’s really like to have a child with Down syndrome from a physical and emotional angle. “I have a daughter who sucks her thumb and has pubic hair,” Silverman thinks. “She’s still Sophie...She [i]s--and she [i]sn’t” This is where we all panic in our parenting, isn’t it? Where the truth comes out that our children are not what we expected, but that we cannot believe the love we have for them.
It is not only in the beginning that Silverman wonders about the minute details of this new tiny person, throughout each and every page she will question and research every aspect of what makes a human become a productive, happy big person. Ms. Silverman is a mother who isn’t sure how to connect with her child and this feels wrong, in fact even somewhat inappropriate. She has another daughter whom she felt that all encompassing kind of love for and though she knows she is completely responsible for this new daughter, for much of the beginning of the book she thinks of her as her Down syndrome daughter instead of as Sophie. It is this vulnerability of ultimate love that terrifies Silverman. Can she love this child who is different? This one who might die after the open-heart surgery she has at just three months old.
Early on she turned her fear into curiosity, “First up: Just what exactly is Down syndrome? The genetics counselor (and every doctor I’ve talked to and book or article I’ve read) explained it so simply: In the vast majority of cases, something goes haywire during conception (probably having something to do with an old mom, according to the “expert”) and the fetus winds up with an extra twenty-first chromosome.” Throughout “My Heart Can’t Even Believe It,” Ms. Silverman explores these questions from every angle affecting a human being’s growth. She becomes the kind of investigative reporter Erin Brockovich aspired to be. Her in depth look across every existing discipline, while always keeping Sophie at the center of her research, helped her fall deeply in love with Sophie. It is when she sought out expert contacts in the areas of science, society, education, Special Olympics, Alzheimer’s research,and group homes that she found where Sophie might begin to fit in and began to move from a place of grief into a place of peace. That moment of peace, though, changed with each year. As Sophie grew, so did the supports that needed to be in place. There was a therapist who only worked with kids when they are younger. There was the elementary school that ended at fifth grade. Just as Amy Silverman would get her bearings and make sure Sophie felt confident and secure, the externals would change and shift throwing them off balance.
“I still remember the very moment I began to worry about Sophie growing up--and realized just how ill-equipped I was to deal with it,” Ms. Silverman recalls. This doubt created the momentum she needed to continue her research as Sophie grew. She forced herself to let go of the slammed doors and find places that wanted Sophie and would welcome her with the joy Sophie deserved. What she discovered was that there were great places where Sophie would be accepted, but there were also lots of places where--though it was illegal to say no--people found ways to block Sophie from being admitted. I felt like Silverman’s best friend as I cried when Sophie would wonder why she couldn’t be like everyone else. The pain of having a child in pain runs deep.
There were times, I felt, when Silverman’s story gets bogged down in the technical descriptions of her investigation, but those parts also reinforced her drive to get to the bottom of what this one extra chromosome means for her child. Silverman’s details also remind the reader regularly that Sophie is not a typical child. She is a child who, in middle school, needs assistance with her velcroed tennis shoes. Down syndrome is not something that heals with time. Ms. Silverman eloquently takes us down the path of constant care that is being the good parent of a child with Down syndrome.
“Will I still have Down syndrome when I grow up?” Sophie asks her mother regularly and it is Silverman’s job to tell her the truth, hug her tightly, and love her a little bit more...if that’s possible.