I keep finding myself looking at my daughter with the kind of awe I felt in the early days after she was born, and then again in those days as she recovered after we’d almost lost her. And then again when the seizures started coming fast and heavy.

And then again after the first time I had a way to discuss what we thought caused her to struggle so: PCDH19 Epilepsy.

Now again I feel that feeling, that sense of wonder at her very existence, as we have another series of letters and numbers to contemplate: SCN8A.

When I was expecting Esmé had thought that I would mold my child, that I would help her to see and understand the bright, beautiful, and sometimes frightening world. Before I held her in my arms, I imagined helping her to find her voice, teaching her, guiding her. I dreamed things for her–I imagine in the manner of many mothers–in ways that confused what I wanted with what my child might someday want, that forgot the boundary between us.

But since the moment I first held my daughter, have had the sense that she was not quite “mine” in the way I had expected–that she was a fragile and powerful creature entrusted to me, a person who was very much herself.

From the moment Esmé came so silently into this world, it has been me that has been hers–not her who is mine. It has been her that has molded me into something resembling the mother that she needs. It has been her who has taught me to see the world differently. Even as she still struggles to find her own voice, she has helped to show me mine. She has lead me, stumbling as I do, toward something. I am not sure what it is.

But I trust that it is something that I need to see.

I believe that more than I have ever believed anything in my life.

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