Disclaimer: I’m not going to write a big post filled with rainbow and unicorns about how wonderful it is being a mom of a child with Down syndrome and how much joy she brings to my life. Before you get offended, I think I need to be honest - I have four beautiful daughters who EACH bring me copious amounts of laughter and love each day. They are EACH responsible for the stress and frustrations that come with being a parent. Down syndrome doesn’t make Kendal more wonderful, or more stubborn. Down syndrome is simply a part of who she is, much like her blue eyes and infectious giggle, Ava’s big smile and love for corny jokes, Morgan’s unruly curls and independent streak, and Arwen’s button nose and love of hugs. All those things aside, I do owe a lot to Down syndrome. I know I’d be truly be missing out on many wonderful aspects of my life had Kendal not graced our family with that extra chromosome. Some of my (and our family’s) best friends have been forged through this community. Families who share and understand our challenges, and are the first ones on the sidelines cheering like crazy for each success. Families we attend SDSS events with, have weekly coffee dates with, and weekend playdates. When I was asked to join the Board here at the SDSS, I wasn’t sure what to expect. Sure, I had big dreams and was ready to change the world (oh, I still am!), but what I didn’t plan on happening was where the SDSS would take my heart. I’ve gained lifelong friends and fellow advocates, but biggest of all - I’ve met some of the most amazing, stubborn, funny and inspirational people with Down syndrome a long my way. I am so thankful for these people I get to call my friends and that they’ve come into my life. I get to watch them grow and become leaders in their schools, workplaces and communities. They are the ones changing the world - digging a path for young people like Kendal - and we get a front row seat. I am so proud to be a part of something so big. The changes they’re making are subtle but not unnoticed. They reach far beyond the obvious inclusion in classrooms and workplaces. Kendal recently attended a birthday party for a classmate, and was welcomed by her friends as just that - a friend. Her peers look at her as an equal. They help her when she needs help…. they help each other when they need it. This is the way it is SUPPOSED to be. Ava and our friend Nick spoke at our school this past March about what Down syndrome means to them. They spoke about their dreams - Ava for Kendal, Nick for himself and others with Down syndrome… and get this - they were the same! The generation before Kendal’s are making these changes in our world - they are going to university, participating in their communities and working at meaningful jobs that they love. My role as Chair here at the SDSS is lead by our self-advocates on our Board. It is their thoughts, dreams and future plans that we want to make a reality. Thank you for celebrating NDSAW with us. I am so excited that you get a closer look at why we’re each here. This Board of Directors is one-of-a-kind and truly an amazing group of passionate individuals.
From our family here and my family at home - Happy National Down Syndrome Awareness Week!