If I Could Rewind the Clock, I Wish I Would Have Known This About My Daughter’s Diagnosis

In October 2012, I sat in a tiny examining room at the Children’s Hospital of Philadelphia. I listened to a geneticist tell my husband and me that my 2-year-old daughter has a rare genetic syndrome called Williams syndrome. I remember asking a battery of questions in rapid succession, a frequent coping mechanism of mine. I remember the single tear that rolled down my husband’s cheek as he sat there, silent. I remember the geneticist telling us, in an attempt to make us feel better, that she knew an adult with Williams syndrome who took public transportation alone. This only made us feel worse. I thought I was having an out-of-body experience, hovering over this devastated couple that looked a lot like myself and my husband.

When I was pregnant, I often had the thought that my daughter was going to set the world on fire. I had many daydreams about her becoming a lawyer like myself or perhaps a doctor like her dad. But in that small, cold examining room, I thought those dreams had been burned to ashes in a matter of moments.

I’d wished for a daughter who is strong, resilient, kind, empathetic, funny and joyful. If I could rewind the clock, I wish I could have known on diagnosis day that this child, my daughter, would be all of those things and more. I would have told myself that she would amaze me on a daily basis, with her willingness to keep trying, even when things are hard — that she would exceed my wildest expectations about the human spirit and its capacity for love, joy and empathy. I would have told myself that she would teach me so, so much more than I would teach her — that her diagnosis would improve me as a person tenfold, that it would open up a whole new world and give my life a true purpose worth fighting for.

 I would tell myself that I’d been given the daughter of my dreams.

I would say, “Lucky, lucky you.”


The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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