I started this project nearly two years ago when I saw a video chronicling mothers’ messages to themselves right before they gave birth. It was so moving to me as a mother that I decided I’d like to see something similar but written by parents of children with disabilities. I posted this question on my blog: If you could say one or two things to yourself the day of your child’s diagnosis, what would those words be?
I then asked each participant to write the answer on a piece of poster board and reassured them that the message could be funny, angry, moving, depressing — whatever they wished they could tell that former self. They were to take a photo of themselves holding the message and email it to me.
I started getting photos right away and filed them away on my computer for a bit of time. I think I resurrected the project again sometime last spring and got more and more photos. When I finally had a critical mass, I enlisted the help of Phil Konya who, with his wife Erika parent a beautiful three year old with Angelman Syndrome. I had met them both through blogging, but since they live in southern California, we’ve met and become great friends. Phil is a wiz at graphic design and technology, so I gave him the photos and asked him to put together the slides for me with Patty Griffin’s song “Heavenly Day.”
I couldn’t be more pleased with the result and can look at the photos, at the beautiful words and most of all, beautiful faces over and over. I find their eyes stunning — and despite the fact that I’ve never met most of them and they come from all over the country, Canada and Israel, I feel a connection that is at once sustaining and intimate. I hope that everyone who watches the video — those that are experienced people on the path and those, especially, who are new to it, will find connection, too.
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Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.