May is Williams Syndrome Awareness Month!

Once upon a time, an angry, tiny baby was born. He was sweet and cried constantly and shredded his tender little face with his fingers. We put socks on his hands and, with doctor’s permission, duct-taped them to the sleeves of his onesie so protect his skin. Apparently it’s fine to do so if the tape never touches their skin, and if the alternative means your little one looks like Freddy Kruger.

Niko, three days old

At about 18 months or so, Niko was diagnosed with Williams Syndrome. You can learn about it from the Williams Syndrome Association, or more personally from my unfiltered blog at the time where I screamed into the void.

At the time, there was little we knew about Williams Syndrome. We knew there would be struggles, and he would probably die of heart issues, and at the time the average life expectancy was 18 years old.

Now we know so much more! We know what real, selfless love is. My children learned how to be the best kids and siblings they could possibly be. We learned how to slow down and savor the world with Niko, how to manage anxiety when it comes to fireworks, and more about washers and dryers than you’d ever think possible.

I thought I knew strength, but Niko taught me strength. I thought I knew compassion, but he taught me real compassion. I thought I was a good person until I realized I could be so much better.

Niko turns 20 years old today! We’re celebrating by going to the Mini Grand Prix to ride (or watch) Go-Karts and rides and slides and pretend we’ll eat the pizza we order, but we really won’t, because he’ll only eat pizza from Dominos so we’ll have to go there afterward. It will be amazing. It will be wondrous. It will be an adventure. Happy Williams Syndrome Awareness Month, my darlings, from us to you!


2 Comments on “May is Williams Syndrome Awareness Month!”

  1. This blog makes me smile. Seeing you love him with your whole heart each time I see you and your sweet family is such a privilege. The love you show him helps him reach the height of his potential.

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