I have three daughters. My two younger daughters look more like my husband and most like each other. With blonde hair, blue-eyes, round faces, and perfect noses they are, to me, gorgeous. They are both vivacious and social. They sing, they dance, and they are both so silly. Neither of them have been to the doctor for anything more serious than an ear infection (yes, I just knocked on my wooden desk as I wrote that). I watch the two of them sometimes in awe as they excel at everything they try. They are who I always wished I could be. They are perfect.
During these moments of awe my eyes will inevitably move to my oldest daughter. And my happiness will be instantly mixed with…well, mixed emotions. She is amazing. She is insightful and reflective. She loves to read and get lost in other worlds. She is strong and brave. She has endured pain I could not imagine and fear I’ve never felt. She does not look like her sisters–she looks like me. She has dark hair and my pointed chin and my crooked nose. Her spine is slightly humped and part of her body is covered with light brown patches. She has a hearing loss in her right ear. She is clumsy and awkward. The nerves connected to her spinal cord are covered in tumors. She had major spinal surgery when she was only ten years old and she may face many more surgeries. She has Neurofibromatosis Type 1.
NF is a chronic, genetic, neurological disease that causes many horrible things, most of which I’m afraid to even write about. Her case is mild and we’ve seen a fraction of the symptoms and for that I can smile and remember how blessed she is. I smile at her beauty despite her physical flaws. I glow when I think of her bravery and her endurance. I cry when I ask why. Why did HER gene mutate but not her sisters’? Why must her life be filled with pain, worry, and questions?
I used to blame myself for her condition. She looks so much like me and she’s my only daughter who looks like me—it must have been my genes that caused this. Every time someone made a comment about our similarities I would cringe. Yes, she looks like me. Yes she’s got a horrible condition because of it. Lately, however, I’m looking at my “mini-me” a bit differently. I’m a strong, busy, working mother and I am proud to say that there is not much that will knock me down. I keep moving and doing until I’m so tired I can’t think…then I get a(nother) cup of coffee and keep moving and doing. Thank God she is most like me. Nothing scares her, nothing knocks her down. She loves to be busy and works hard at everything she attempts. There is NOTHING she doesn’t think she can do. I’m so glad I passed those genes on to her. My daughter is bent but not broken, perfect with her imperfections, and she will move mountains. And maybe I’ll have a little something to do with that.
My daughter and I, holding each other up in the Zen Garden at Yale, four days post spinal surgery.