WDSD 2019

After Hannah was born Pete and I imagined a future based solely on assumptions. Since we had no prior experience with Down syndrome we didn’t know what it meant for our family and the stories we crafted were all based on fear. One of our misguided predictions was that we’d lose all of our “typical friends” as Hannah grew up. The initial surge of love and support would slowly recede and we’d be excluded because our child would be too much for them to handle. As someone who never really felt a sense of community growing up it hurt to think Hannah was doomed to feel the same.

In the last four years I’ve found myself in limbo between “special needs mom” and “regular mom,” not feeling like I fit in either group. In the vast world of special needs, Hannah’s are pretty minimal. Her delays and challenges aren’t “special” to us because they’re so engrained into our daily living. Plus, a lot of our struggles lately are based on the usual shenanigans of a 4 year old. But then we leave the comfort of our home and in the real world I’m “that mom.” The one hovering at the playground. The one letting her child hold up traffic on a staircase. At times I’ve felt like there’s been an ugly neon sign above my head telling other moms that I’m different, warning them that interaction with my family won’t be typical.

Recently, however, I realized that if there’s anyone to blame for feeling like there’s a lack of community, it would be me. I’m the one imagining that neon sign and it’s been blinding me, preventing me from seeing the incredible community we have. Our friends have typical children, children with special needs, children older than Hannah, and children younger than her. We have our families and their friends, our coworkers, and a ton of virtual friends. Hannah has her daycare friends, her preschool friends, her yoga friends, and her leadership class friends. And none of these people care that an extra chromosome makes our family a little different.

Today we celebrated our 4th World Down Syndrome Day with this wonderful community. The day started with Hannah noticing and complimenting my socks as soon as I walked in her room. From there, it was giggles and the biggest smile as we put on her polka-dot leg warmers, one Elmo sock, and one Oscar sock. Then, there were the colorful and mismatched socks everywhere we went. Lastly, we ended our day admiring the flowers and card from her daycare class. If I had one wish it would be for every child, with special needs or not, to be surrounded with this kind of love. 

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