Thursday, February 9, 2017

MEET EZRA: OUR FIRST VIDEO


Yesterday my sweet friend Cherish, who I attended my Baptiste kids yoga teacher training with, hosted a fundraiser for Noonan Syndrome and the RASopathies Network in honor of Ezra. She had me make a little video telling Ezra's story, and why we spread awareness for Noonan Syndrome in February (and throughout the year), and why we raise funds for the RASopathies. I can think of few things worse than seeing myself on video, but if you don't want to read through my many, many blog posts, the video is a pretty decent summary of the last few years. I am so touched by Cherish's efforts to support our family, and I am overwhelmed with gratitude for all her clients who were willing to learn about Noonan Syndrome for the first time yesterday. I was thinking about it last night, and although I don't say this in the video, I came to realize one really specific reason why it's so important for me to spread awareness (even though that can sound so cliché) - it's because once upon a time, before I had a child with special medical needs, I heard other mothers' stories that touched my heart...Kelle Hampton, and Lisa Leonard, and so many moms throughout the years who were courageous enough to share their stories. This world was so foreign to us before we entered it, and it was the stories in the back of my mind from these mothers who came before me that helped reassure me everything was going to be okay. It was their strength, their joy, their vulnerability, their hope, their honesty, their unconditional love that helped set the mark. If Ezra's sweet "Hi, I'm Ezra!" stays in the back of just one mom's mind down the road when she learns her child has a rare disease or special needs, and she is encouraged by his joy, our joy...then it is all worth it.

 

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