A long, long time ago, I asked my community of fellow caregivers to send me a photo of themselves holding a sign with their messages to themselves on the day their child was diagnosed with a life-threatening illness or a disability. I collected these photos and messages, and another fellow caregiver and her husband put them together with this beautiful song by Patty Griffin. I called it the Extreme Parenting Video Project. It’s still hanging out on YouTube, and I think despite my own irrelevance, it still holds relevance. All these years later, I can look on these beautiful faces — some of whom have lost their children to cancer, to epilepsy, to profound illness, some of whom have been dealing with cancer themselves and one who actually died of cancer — and feel a deep and abiding sense of community. I say each of their names to myself silently and then their child’s names. You can see that the most common message is about help — asking for help and accepting help. I think, overall, that the simple video reminds us to not just to seek help, accept help and find your community, but also to know that caring for our children, young adults and even elderly relatives or friends who are sick, disabled, or dying is the most deeply meaningful work we will ever do.
As the great bell hooks said, "We would all love better if we used it as a verb.”
Your video should be viewed by everyone. It was powerful then, and feels even more urgent now.
Beautiful!