I threw myself a little pity party in 2011 when all the families with a diagnosis were raising awareness for their children’s syndromes. We were left out so I invented a day, Undiagnosed Children’s Day, and something wonderful happened. I discovered community. I love when that happens, a beautiful synapse. Turns out that our children are known as SWANS (Syndrome without a Name) and have organizations devoted to helping them both navigate the medical system...
Once upon a time and long ago I sat around feeling excluded when everyone was wearing their purple, blue, pink, green, red ribbons to raise awareness for CP, DS, cancer, etc. I had a kid with no diagnosis, nothing to raise awareness about, no community of people who get it, no actual message to tell people to get. I had a pity party which turned into an international day of awareness for Undiagnosed Children, because,...
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