A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, December 18, 2012

Another Weekend Wander

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.


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