Her Spirit

Today’s post comes from Catriona. She is a writer, mother and advocate. I first met her online, reading her blog and then in Boston at a family conference for Rett Syndrome. Check out her blog if you’d like to read more of her stories about Amy and their life, Living with Rett Syndrome.

Being grateful sometimes feels like a challenge too far. Even if you know that there are things to be grateful for. Glass-half-empty types like me have a tendency to hone in on the things that remain unfixed and all wrong, to raise a skeptical eyebrow at the suggestion that living with something like Rett syndrome could be considered to be any kind of blessing.

For years I was not grateful, not one bit. All I could see were the things my daughter Amy was unable to do and the way my previously under-control life had shattered into a thousand tiny unmendable pieces. I wanted to make people understand, but not just that: I wanted to make them share the pain. I raged against everything I could find to rage against: my favorite targets were the deficiencies of the education and social services system. I didn’t want to count our blessings; I wanted to run far away.

It took me a long time to slow down enough to fully appreciate my daughter as the unique person she is, and the things that make her special (as well as ‘special’). When I began to do that, the world began to look different. I realized that she is a girl who will not be silenced – and that this is a good thing.

The absence of silence is not an entirely unmixed blessing, I will allow. No ‘silent angel’, is she! I have done my fair share of raging at Rett syndrome, and I think she does the same. She doesn’t quietly accept: she wants to be heard. She wants to tell us, and she wants us to understand. Her frustration when we don’t is immeasurable.

One of the things that made me saddest when she was younger and her diagnosis was newer was the fear that I would never know who she really was. That she would remain a permanent mystery to me, with communication restricted to smiles when she was happy and screams when she wasn’t, with minimal insight on my part into what caused either state.

I haven’t unlocked the mystery yet, not fully. But I do know who she is, and that’s because she shows me. I know that she has a great sense of the absurd, that she loves jazz and big-band music and word-play, that she hates having to wait and being left out of things. I am grateful for all that, and that I know it.

Above all, I am grateful for – and proud of, and slightly in awe of – her indomitable spirit. She is a tiny girl with severe physical limitations and a whole series of things to deal with that would challenge the most stoical of us. But she has a big voice and a big personality. And more than anything, a big determination to be heard.

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