Some of my favorite bloggers and writers are sharing their stories on mothering daughters and being daughters themselves. As the mom of a newly arrived bit of sugar and spice, I can’t wait to see what insights these ladies have to offer.
((This week, Emily Ladau and her mother, who are both affected by disability, share their perspective on mother-daughter relationships, guilt, and unconditional love. I am pleased as punch to share these words with you. If you aren’t following her blog, you should start now.))
My mother’s guilt is no secret in our family. The two of us are talking openly about it right now as I sit here trying to write, debating the shape we want this piece to take. As she tells it, after my mom married my dad, she wanted to seek reassurance that as a disabled woman, she could safely carry a baby to term, and that she would not pass on her disability. Together, my parents went to a prominent New York City hospital, the one where my mom was finally told around age 10 that what she has is called Larsen syndrome (LS). There, she received a physical evaluation and genetic counseling.
At the time, the genetic counselor told my parents that LS couldn’t be passed on from my mom, and the chances of my dad having the same rare gene were infinitesimally small. In fact, the main concerns regarding my mom becoming pregnant had nothing to do with me. Doctors warned that a hormone released during pregnancy called Relaxin could further dislocate her joints, and it was also determined she would have to give birth via C-section. My uncle, a doctor and my mom’s older brother, advised her to seek care from a high-risk pregnancy specialist.
My mom became pregnant at the end of November 1990, and for a little while it was relatively smooth sailing. But around 20 weeks, a sonogram revealed that I had clubfoot and a cleft palate. At that moment, my mom knew. She figured out she had passed on LS. From then on, the medical focus shifted to me, to keep my body and bones safe. There was never any question that my parents would allow the pregnancy to continue. I was already named Emily. Disability and all, I was theirs.
This particular retelling of my mom’s pregnancy story, which I typed as she shared, has left us in a melancholy hush with teary eyes. Tears from my mom’s guilt, and tears from my wish that she could leave the guilt behind.
For as long as I have been old enough to understand, I have known of this particular struggle that my mom faces. And for as long as I have been able to express it, I have made sure my mom knows that there’s not a day in my life that I’ve ever held my disability against her. But I understand her wellspring of guilt, how it bubbles up each time she sees me fighting through something and thinks back to how she conceived me under the promise that she wouldn’t pass on her disability. I feel, like a punch in the gut, how deeply painful it is, through her eyes, to have watched me grow up facing so much of what she faced every day, and to know that like hers, my challenges will be lifelong.
Every surgery I’ve had, every time I’ve felt the pain of rejection or discrimination because of my disability, every time I’ve been excluded because friends weren’t sure how to handle my access needs, my mom has felt it, too. Of course, so much of this is just part of being a mother, regardless of ability. It is natural instinct, a mother’s love. For my mom, however, it goes deeper, because in so many ways my experiences as a disabled person mirror her own.
Though it’s undeniable that being a disabled mother-daughter pair has brought jarring speed bumps to our road, it has brought us together in ways I wouldn’t trade for the world. My mom and I balance each other out, both physically and emotionally. On many days, the task of one disabled person helping another disabled person causes us to dissolve into uncontrollable giggle-fests. On the tougher days, we can share an understanding rooted in our DNA and know we’re not alone. And of course, it’s not a bad deal that I can bend down to help my mom take off her leg braces while she can reach stuff for me from high cabinets or the top shelf of the fridge.
How lucky I am to have parents who chose to bring me into this world, and to have a mother who understands my experiences from the very core of her being. It is no mistake I am here, and it is no mistake my mom and dad are mine. I wish every day I could wash away my mom’s feelings of guilt, though I know it’s a struggle that may never fade. But at the end of each day, what keeps us going is that I love my mom unconditionally, for unconditionally loving me.
Emily Ladau is a writer and disability rights activist whose passion is to harness the powers of language and social media as tools for people to become informed and engaged social justice advocates. She blogs at Words I Wheel By, keeping it real about what it’s like to be disabled and encouraging people to understand the experience of having a disability in more positive, accepting, and supportive ways. It’d be pretty awesome if you stopped by to say hi to her on Facebook and Twitter!