
Dream
Woke up from the dream, with teary eyes. I dreamed about Joey, the third time in two years. Only the third times. I don’t understand. How could you think of someone every day, every...
Woke up from the dream, with teary eyes. I dreamed about Joey, the third time in two years. Only the third times. I don’t understand. How could you think of someone every day, every...
Last back-to-school photo I have been enjoying the back to school pictures this year so much. The day when I woke up, I couldn’t wait to check my facebook. I love to see Joey’s...
Hashtag Prescription The hidden cost of crowd-sourcing a cure – front cover story of Harper’s Magazine Our journey of seeking compassionate use of immunotherapy for Joey.
Brightly colored cranes are in flight at the Harn of Museum of Art. As part of the new “Shared Hope” exhibition, the origami birds made of intricately designed paper hang from the ceiling of...
Empty. They are all empty now. All the rooms. I don’t know how I survived packing up his stuff. I have been dreading this date, the date l have to put away his belongings...
I have always been drawn to the ocean. All the cities we have lived so far, there is ocean within two hours of drive. It’s endless. It’s calm. It’s relaxing. It’s full. It’s magnificent....
A friend came to visit and gave little David a present. David told her:”Joey is away from home for a long time now.” Then I realized he meant Joey might want a Christmas present...
Everything here is so beautiful. Physically I enjoy the breathtaking scenery and sense of peace, but mentally don’t. It’s so strange. I feel like watching a movie while watching other people having fun. Their...
November is here. I am terrified of going to sleep or waking up. On Nov. 24th, 2014, Joey was airlifted from Cincinnati Children’s to Shands. 5:50pm on Nov. 26th, he took the last breath....