by Brad Rivard
I’ve become fond of the phrase “Frustration and anxiety live in the space between reality and expectation”. For Rachael and I, we really started to feel that when we got Amelia’s diagnosis of Mosaic Down syndrome when she was 15 months old. We were, and still are, the typical parents who, to pull from the classic and very accurate “Welcome to Holland” essay by Emily Kingsley, landed in Holland but planned to be in Italy. We quickly realized that there was no need for the frustration and anxiety when we found the DSAWM and started to learn about the wonderful community and joys that having a child with Down syndrome can bring.
We’ve developed and lived the ethos that Amelia’s diagnosis changed nothing yet it changed everything. It changed nothing in that a parent’s mission is to provide the tools, resources, and experiences that allow your child to become the best version of themselves. It changed everything in terms of what resources, tools, and experiences we provide for her. Our mission as parents never changed, and never will.
Today, Amelia is the joy of our lives and like many she brings the joy and love into every room. While she challenges us at times – as all kids do – we wouldn’t change a thing.
Shortly after she was diagnosed, we got involved with the DSAWM. Over that next year, I had the honor to serve on the Board of Directors as a Member at Large, and then later as Vice President. To say the DSAWM has been a large part of our lives is an understatement. I am so proud to be part of an organization that embraces the challenges of change and the promise of progress while keeping true to the mission – supporting lifelong opportunities for individuals with Down syndrome and their families.
Over the next couple of years I am excited for what the DSAWM has in store. We have been blessed with a wonderful staff who have embraced our community. We are actively working on both sustainability, as well as growth for the organization. Most importantly, we are continually working to provide valued experiences, programming, and education to our members that are consistent with the mission.
I look forward and thank you for your continued support of the DSAWM, and to seeing all of you at one of our upcoming events.