This morning Lily, Urzsula (one of her beloved caregivers) and I met our cousins the Darlings at the Children’s Museum. We had a blast, especially at the dance party!
Everyone at the museum was super accommodating to Lily; they even let us choose most of the dance music. Watching Lily run around with a big smile on her face – enjoying the music, the people, the mirrors – was such a relief. You see, Rett Syndrome has been very unkind to her lately. In the mornings, she can barely walk. And she wakes up screaming and shaking and scared multiple times throughout the night.
At the museum today it was nice to have a flash of an ‘almost normal’ existence – for both of us. I don’t take these good days for granted.
Afterwards we went around the corner to Fred’s restaurant for lunch. It was a busy day…
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