When my daughter Sophie was born four years ago, the doctor announced to all in the delivery room, “She has red hair!” I was thrilled. Although my husband and I had dark eyes, hair and skin, eliminating the possibility of a redhead, I counted my lucky blessings that some recessive gene had been turned on, resulting in strawberry blonde curls, bright blue eyes and a rosy, fair complexion. The grandparents all claimed that she would change. “Your eyes were blue for so long, we thought they’d stay that way,” my mom explained. “I was blonde as a child,” my husband reminded me. As I looked at my little changeling, though, I knew that something wasn’t right. Instead of crying, she screamed, a god-awful sound that made us think she was hurting. Instead of latching on right away, she seemed confused at the breast. Although she rolled over at three months, she then put her trick on hiatus until nine. And when she wasn’t sitting up at ten months, we consulted with the doctor. After another year of seizures, missed milestones and frustration, we finally arrived at a diagnosis: Angelman Syndrome. Sophie’s fairness was the result of a deleted chromosome that had been eliminated by chance in the intricate choreography of meiosis. The result was drastic: Sophie’s developmental progress was slower, her movements jerkier, her voice silenced. On the other hand, her smile was bigger, her demeanor easier, her sunny disposition even brighter.
I sent out an email to family and friends soon after we received the diagnosis. In it, I explained our journey to find an answer and what that answer involved. Then I explained our motto: “We want to help Sophie be the best Sophie she can be.” Immediately, friends and relatives – even friends of friends and relatives – began calling and emailing, sending letters and cards. They all mourned the little girl that we would never have. Sometimes, I did, too. But mostly, I held fast to my belief that all experiences are relative. We don’t know a different Sophie. In some ways, she is easier than a typically developing child. She will never argue about what she will wear to school. She will never avoid my kiss at the bus stop. She will never, in a sixteen-year-old rage shout, “I hate you, Mom.” It’s a trade off, of course. I believe that it’s all relative. Somewhere, there is a family with a child who is dying. Somewhere, there is a four year-old who will not, will NOT, wear her red sneakers to school. And each situation is hard. Sophie came into my life to teach balance, strength and a theory of relativity. With her, I discover that I can deal with anything as long as I have the right perspective.
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