The Extreme Parenting Video Project was born several years ago when I asked my community of special needs parents (those who read my blog and those I’ve met “along the way”) to think about what they might have said to themselves on the day before their child was diagnosed. My hope was that we might, as a group, provide a moving testimony about not just the challenges of being what I call “extreme parents,” but also the joys and the triumphs. I was certain that this community was incredibly inspirational, but not in the usual, treacly way we have grown accustomed to seeing on social media. I knew this group would be authentic and that their strength and resilience would shine through and provide a message of hope to parents whose worlds had been rocked like ours.

The parents to whom I reached out have children with complex healthcare issues, developmental disabilities or are otherwise “atypical.” Some have lost children due to cancer or disability and disease. I asked each person who wanted to participate to write their message to themselves on a poster or piece of paper, to hold it and have someone snap their picture. The response was excellent, and soon afterward my friend Phil Konya, the father of a little girl with Angelman Syndrome, took the photos and arranged them to match the inimitable voice of Patty Griffin as she sang “Heavenly Day,” one of my favorite songs and an anthem that acknowledges sorrow and loss but transcends it with love and gratitude.

Here’s the finished video that I hope you’ll share with anyone who might be new on the path and who needs encouragement and hope. I think it speaks for itself…

Elizabeth Aquino

Elizabeth Aquino

About the author

Elizabeth Aquino is a writer living in Los Angeles with her three children. Her writing has been published in several literary anthologies, the magazine Spirituality and Health, The Los Angeles Times and several online sites, including Krista Tippett’s acclaimed OnBeing website. An excerpt from her memoir, Hope for a Sea Change was published by Shebooks last year and is available for download on Amazon. Her blog, a moon, worn as if it had been a shell is a site where parenting, disability, poetry and politics intersect. When she isn’t writing or taking care of her three teenagers, she runs a monthly literary and food salon called Books & Bakes. She also likes to bake cakes and remember her former life as a pastry chef.