Having suffered from birth defects myself in addition to self-image issues from not feeling beautiful or "normal" while I was growing up, I'm drawn to memoirs by people facing similar challenges. Many years ago I was similarly moved by Lucy Grealy's Autobiography of a Face, about a girl who had to have 1/3 of her jaw removed as a result of childhood cancer.
Emily Rapp was born with a rare genetic bone and tissue disorder that resulted in one of her legs being shorter than the other. Throughout her early childhood, she had surgeries to amputate parts of her left leg and began wearing a series of prosthetic devices. The daughter of a Lutheran minister, she soon became a "poster child" for the March of Dimes, which at that time focused primarily on preventing birth defects instead of prematurity. Perky and smiling on the inside, yet grieving and deeply angry about her lot in life on the outside, she reacted by lashing out at her supportive family and becoming, in her words from an interview, a "spoiled brat."
Stricken with self-doubt and a desire to be beautiful, she devoted herself to becoming perfect in every way. This not only manifested itself as becoming a perfect student, but also becoming anorexic and obsessed with her weight. She also sets out to be an athlete, excelling at skiing and swimming, and becoming a school mascot for various sports teams.
Rapp is brutally honest about her feelings of brokenness and deep, aching loneliness. She befriends the aging, rough-around-the-edges veterans and other amputees she meets at appointments with her prosthetists. When she discovers the liberation theology of disability (pioneered by theologian Nancy Eiesland, who wrote The Disabled God) and the writings of other disabled women, her awareness cracks open. She doesn't really deal with the grief of losing her leg until she's living in Korea (a country that shuns people who are different, especially those with disabilities) and is terrified that her host family and students will discover her secret...and she has a breakdown. Later on, she undertakes a program for the Lutheran World Federation by bringing together disabled women from around the world to share their mutual experiences of disability and faith.
As I mentioned at the beginning of this post, I too had birth defects (my mom had German Measles while she was pregnant). I was born with a cleft lip and palate, as well as a club foot (I had to wear a brace as a baby, but it was corrected). I had numerous surgeries throughout childhood and had to wear an awful, gagging speech appliance in my mouth (an obturator) until I was 15. As an adolescent, I had severely crooked teeth and had to have extensive orthodontia and two corrective jaw surgeries. My nose is not symmetrical (because of my cleft lip). Like Rapp's parents and experience, my parents never treated me as I were anything less than beautiful, but some other kids did. They stared at my scar, and even still, curious children ask me about it. In spite of their support, Rapp hates her body and cannot fathom the thought of ever making herself vulnerable enough to have sex without her prosthetis.
While I was reading this book, I discovered that Rapp went on to get married and have a child of her own. Tragically, her son Rowan has Tay-Sachs Disease and will not live past the age of three. She writes poignantly of being a "dragon mom" in this New York Times article:
"We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.Again, I can relate. Even though my once-fragile baby boy has had a better outcome than Rapp's beautiful and precious baby Rowan will, I share her thoughts about shallow parenting. You know what I'm talking about...those parents who complain about the most ridiculous things or push their children to be outstanding athletes or students. And especially those who brag about their children's brilliance and look down on other children who struggle with academics,sports, or social issues. I have no patience for that...not when parenting for people like Rapp and her husband is boiled down to treating each day as a blessing, knowing that this day might be all they have. I remember trying not to worry as my son did not talk until he was three years old...and as he struggled to become potty trained, write his letters or draw pictures, play sports, make friends. I know too many parents who have lost their children in infancy or early childhood.
NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.
And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever."
"What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
I feel blessed to have read this book and become aware of Emily Rapp's beautiful writing.But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."