Yesterday was a first. We along with numerous other families around the World recognized 3-21, a day set aside as World Down syndrome awareness day. Appropriately picked because of the date coinciding with 3 copies of the 21st chromosome. Before it had always marked a passing "beginning" of spring (although here on the Gulf Coast it feels more like summer) and was rarely given a second thought. This year it means our admittance into a global community that we rarely thought about and never fathomed we would be a part of. I diligently made us all 3-21 t-shirts, or a onesie in Johnny's case, as a visual representation of today. The teachers at the girls Mother's Day Out program said they racked their brains all day long trying to figure out what it meant or referred to. We also timed a belated birthday dinner for myself to give Mattie the chance to wear his shirt as he was unable to wear a t-shirt to work of course. It felt like a badge of honor to wear that shirt around all day and I proudly told the handful of people who asked why we were wearing the shirts.
There is so much that comes with that extra chromosome. There are struggles, but there is also pure, raw joy that comes with reframing your mind to step back and see what your child actually brings to the life table. Johnny and his extra chromosome have taken so much pressure off of me as a parent. Life has turned from "When is each child going to meet this milestone" to "Wow! It is amazing that they can already do that!" He has taken us from "What is next?" to "What is now?" We approach each change a bit more momentously and with much more enthusiasm.
He is thoroughly uninterested in us
Yesterday as I skimmed through my Facebook feed, I took note of how many friends posted about 3-21 or Ds. And it wasn't for any motive or purpose, it was simply to see. As I scrolled through the pictures, links, and posts people made in reference to Ds, I began to cry. I was overwhelmed with emotion at the idea of how many people in our community have embraced us and our little guy. I felt so amazed by how many people now know a little bit more about Ds because of Johnny. I was humbled to be a part of such a loving and kind group of friends and family that are willing to advocate and say "I know this little boy..." Last year at this time, I had a status update about my birthday and about The Hunger Games movie. Two years ago, my status update was about nursing Keegan. I consider myself to be reasonably educated and before Johnny came along, I never knew that 3-21 was such a day of advocacy, of love, and of life. Just one more reason to thank Johnny for teaching us so much about a great many things.
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