Jesse Torrey’s life ticked all the boxes. She had a degree in Fine Arts from Goucher College and a Master’s in Art Education from New York University. She was married to a wonderful man, had two perfect children, and enjoyed careers as an art teacher and a photographer. But, in 2007, her life and family suddenly fell apart. Her son Jack was diagnosed with a rare disease that left him with more health issues than she ever thought possible. Initially, Jesse started writing to keep her friends and family aware of Jack’s progress. Now, ten years later, she’s come to accept her family’s new normal and writes to share her never-ending mission to create a ordinary life with a special child on her blog, www.smilesandducttape.com. Some days are more successful than others, but she continues to find peace and laughter even in the most unexpected circumstances.
Jesse lives in Maplewood, New Jersey with her husband, Dan, her children, Jack and Anna, and their dogs, Keegan and Finn.
Smiles and duct tape
No one would have ever imagined the Torreys leaving the house armed with a supply of emergency medication and a list of top neurologists or ever needing to change their teenage son's diaper at 36,000 feet. That's the thing about life -- there is so much you can't imagine until it happens. You just need to figure out how you're going to get through it and, more importantly, what's going to hold you together.
Smiles and Duct Tape follows the Torreys on their harrowing journey through Adrenoleukodystrophy (ALD), the rare and cruel disease that forever changed their son's life. It's far from the journey they embarked on when they started their family, but they have managed not only to survive, but also enjoy the ride. A powerful and transformative story of a family’s courage and willingness to carry on and live their new normal with grace, humor, and incredible strength.
Paperback | ISBN 978-1-944193-69-0 | 182 Pages
FAMILY & RELATIONSHIPS / Children with Special Needs
BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoir