As I was writing about our beautiful trip to Nantucket, I realized that I never wrote about our first weekend wander after Dan died.
Over the summer I heard about a family with two young boys that have Niemann-Pick Type B. They live near Watertown, NY, which is about 3 hours away.
We took the scenic route through the Adirondack Mountains and a bit of a heavy rainstorm. What started out as a rainy day, turned into a nice afternoon.
We had a wonderful day talking with family and friends and listening to music.
That evening they had a fire dance routine. Sorry if these are dark, but it was night-time.
Through some amazing generosity, we were able to stay at a summer cabin and enjoy a beautiful sunrise on Lake Ontario.
We had a lovely breakfast with some of the family and drove home.
On our way home, we stopped a met another mom and her two children, one of whom has Niemann-Pick Type C. They only live about an hour away. We had a wonderful conversation about how you move forward after losing a child - she lost her son - and doctors and therapies. I know that we will be seeing more of her and her family.
Tuesday, December 18, 2012
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