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 on the streets of Manhattan and people were overflowing onto the sidewalk waiting for a table. The host (who we learned later has a son with Downs Syndrome) saw the six of us coming and said ‘we’ve got a table inside for you’. They ushered us in and we had a fun and tasty lunch. When I asked for the check, I got this instead:
I saw your family altogether in the Children’s Museum and was so touched by the love and affection and energy you all have. I have a cousin with a daughter with similar difficulties and know what effort it takes and the constant worries you must have.
I hope it all goes well for you. Have a great Sunday!
I have no idea who this kind stranger was. All the adults around the table (especially me) were floored. What a beautiful and thoughtful note. And what an amazing and generous gesture.