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November 29, 2012

Loving a child on the fringe

(Continued)

PARIS —

There are reasons to think the future could be harder — not easier — than the present. But while certain experts (repeatedly quoted by Solomon) have suggested that this leads to "chronic sadness" in parents of children with Down syndrome, I find it leads to "chronic carpe diem" — a chronic desire to seize the day and wring the best possible from every moment — and from myself.

(Optional add end)

I know I will not be able to "pass a baton" to Eurydice the way parents sometimes hope to do with their kids. She is not going to take over my "business" or answer my calling: If I want to sweeten the world a bit through writing, I'd better the hell get down to it myself — the constraints be damned. My child is no baton-bearer; she has her own scepter.

I also know she's unlikely to grow up entirely: She's unlikely to move out at 18 and leave me to my own adventures, so I try to embark on those adventures right now. Toddler in tow, I take every travel assignment I can get from an editor, board every train, scale every limestone fence, and dip my nose longingly into every long-stemmed tulip. It's probably a good modus operandi for all of us.

The joy Eurydice takes in each detail of life is the most infectious quality I've ever known. When she flings her arms around my neck as she does every day, every night, my most recurrent fear is no longer relapsing cancer, no longer early dementia or heart disease or hearing loss — or even the fact that Eurydice is growing up too slowly. It is a testament to how radically this child has transformed me that my most recurrent fear may be that she's growing up too fast — that one day she could be too mature to give me those massive, resplendent, full-body hugs.

If the two of us can avert that catastrophe, I tend to think we can avert them all.

Cristina Nehring is the author of "A Vindication of Love: Reclaiming Romance for the 21st Century" and "Journey to the Edge of the Light: A Tale of Love, Leukemia and Transformation." She is at work on a book of life wisdom gleaned from her daughter.

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