In March of 2022, Evie was born and we learned of her Trisomy21 diagnosis. Immediately I began looking desperately for connection, a community, other mothers who knew what we were going through because they'd been there too. The first place I found some of that was via groups on Facebook. I was blown away by how many different groups there are for parents with extra special babies. They were the first to welcome us to "the lucky few." I remember thinking that while I was grateful to feel welcomed, it was never a group I wanted to join. They were also the first ones to show me that Evie's life would be beautiful and that the love and life we would build with her would be beyond comprehension.
Through those groups, I met and became close to one mother. She was still carrying her beautiful baby girl, and had received the diagnosis early in her pregnancy. We bonded over what we knew, what we didn't know, and allowing each other to share the hopes, the fears, and the realities of what such a diagnosis meant. We were able to do so in such a raw and honest way, and just sit with each other (virtually) in those moments when we felt hopeless, helpless, and terrified, without the need to placate each other. I cherished that then and still do.
Just a few months ago, she and her family traveled to Hawai'i and met us in person for the first time. Hugging Amy was like hugging a long-lost friend. Someone who knows a part of me in a way that no one else does. Snuggling her little Eli was such a precious experience, and I was so grateful for them in that moment and since. One morning at breakfast, Rob was holding Evie on one leg and Eli on the other. He was talking to them and they were both so relaxed and happy. It was so beautiful.
I've met a few other moms with extra chromie homies on this tiny little island in the middle of the Pacific. Some of them have been brief interactions, usually at a park. One is becoming a friend, and I love getting to see her sweet little boy grow and hit milestones.
Earlier this year, our little family and some wonderful friends attended a fundraiser for the Special Olympics team. It was a "walk" with lots of kids and adults with special extras and their friends and family. It wasn't a massive turnout, but this is a small island. It was fun to see others like Evie. It was reassuring to see and feel all of the love and kindness. It was an experience I won't soon forget.
As wonderful as it is to grow our community with others with T21, I am so grateful for those around us (near and far) who have provided support, encouragement, assistance, or just shown up for us. It's a beautiful thing to realize and be reminded how much our precious kids are loved.
The crew that grew... and continues to grow!
Amy's sweet mom generously spent time crocheting these mermaid outfits for Evie and Eli. The photoshoot was short lived, but we managed to get some sweet pictures on Waikiki Beach.
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