Tomorrow is the 13th, March 13th, Trisomy 13 day. It's colors are pink, green and yellow. It's also your nine month birthday, only three more months until you're 15.
The first child I ever met with Trisomy was Arianna, and she has T13. There she was, bouncing away in her wheelchair at the movies and I asked her dad about the wheelchair (it was cool!) and then about her. When Matt said she had "something called Trisomy 13" I about freaked out! You were only a few months old and I had no idea what life would look like. I told him you had T18 and he was excited and got his wife. They were such an incredible support throughout your lifetime, and even after. Julianna and Arianna came to your funeral and as your casket was wheeled out, Ariana started laughing. I think she knew something she wasn't telling us.
Since that day 14 years ago, I've met so many more kids (and a few adults) with T13 and T18, but Arianna was the first.
She's almost 19 now! Her birthday is the week after yours, which makes it easy to remember how old she is.
Trisomy 13 is even more rare and more challenging that Trisomy 18, although they're often lumped together by that awful label "Incompatible with Life." I think they should be labeled "Incompatible with Ignorance" or as we call it "Compatible with Joy" and love and laughter and strength.
You are all of those, and so are your friends.
I like to imagine you kids all in heaven together, banding with each other, strengthening those here and those who will still come.
And those of us privileged to be your family. Because it was and is a privilege to have been able to know you and care for you.You, my son, are amazing.
I love you.
Love,
Mama
“We didn’t realize we were making memories, we just knew we were having fun.”
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