Josh Fyman lives with his wife Avigael and young son Morgan on Long Island. His seven year old daughter Penny has lived for the past 3 1/2 years at St. Mary's Hospital for Children. Penny was diagnosed with Aicardi Syndrome, a very rare seizure disorder. Although the range of severity is large, Penny's disabilities are the most severe, and in addition to seizures she is completely dependent on caregivers for all life activities.
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In today's podcast, Josh tells the story of how their family decided to move Penny to a residential setting after a period of intense medical issues that nearly cost her her life. "The situation deteriorated slowly," he says, "and then all at once." Josh was open about how that decision has impacted them and, most importantly, Penny. He discusses the shock of how it happened, the guilt he's felt, others' judgements, how his team of family and advisors helped them to make that decision and the immediate aftermath. It's a sensitive subject for all caregivers of severely disabled children and young adults, and Josh was honest and incredibly informative in how it's affected him as a father. He is generous with his advice for other parents facing similar circumstances.
Josh also tells Jason and Elizabeth about how he's created adventures for both of his children so that they can enjoy the world around them despite Penny's disabilities and constraints. He has created with them an exciting photo project that involves visiting many natural and notable landmarks around the city and neighborhoods where the Fymans live. Because he's always taking photos of the kids for the project, the one with him in it above is rare. Avigael took it of him with the kids at the Metropolitan Museum of Art. He is explaining one of the paintings to Morgan as Penny takes in the masterpieces around her.
Josh is vocal and passionate as well about advocating for children and persons with disabilities. His story about changing Penny's diapers in a public bathroom is particularly resonant given the charged political atmosphere we live in today where these hard-fought rights are being eroded.
Purchase < $100
Wheels for Penny's Stroller (online for $65) and hardcover photography books
It might sound dry, but Josh maintains that the most inspirational book he's read is actually a page-turner. The human struggle and the twists and turns in the road to ratification are fascinating as well as galvanizing.
Enabling Acts: The Hidden Story of How the Americans With Disabilities Act Gave the Largest US Minority Its Rights
Aicardi Syndrome support group on Facebook