Looking for Alice

A friend of mine dropped a link on my timeline which is about a mom with a daughter with Down syndrome who has been recording moments in her family’s life with their own Alice.

The title of the Slate story, “What It’s Like to Raise a Daughter with Down Syndrome”. I find this misleading. The Slate posted a relatively small number of the photographs and similarly little to answer that question.

Nobody will answer this question in any kind of useful way since it depends on three things: your daughter, your family, and your community.

I can guarantee that, while there will be commonalities in Sian Davey’s experience and ours, there is so much variance in all three things that things will be divergent.

For example, I will always have haunting memories of our time spent in the NICU post birth:

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And the stroke has affected Alice’s ability to follow directions consistently as well as her ability to walk, run, care for herself, eat, and so on.

And although it doesn’t come out directly with the dangerous stereotype of society neither wanting no valuing people with Down syndrome, it does so indirectly by communicating Davey’s fears of those things without ever bringing that to closure, except through the photographs which are limited vignettes of what looks like a typical life (yay!).

Here is a direct link to Davey’s own site with more of an explanation and more photographs.

Where Davey and I agree is that you should absolutely take pictures. Time slips away so quickly and there is magic to capture (but that’s true of every child).

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