Today, I Celebrate You
All we week I’ve tried to avoid the Facebook posts announcing the arrival of World Down Syndrome day… today 3/21. (The medical term for Down syndrome is Trisomy Twenty-one, thus celebrated on 3/21.) I knew my page would be full of photos of my friends who have children with DS and their friends and so on and so on. I wasn’t up for it. The news a couple days ago that Nashville recording artists Joey & Rory had a baby girl with DS hit me kind of hard, which resulted in the raiding of my hotel mini-bar of anything chocolate, which resulted in beating myself up about eating chocolate, followed by beating myself up for even posting such a bitter and horribly written post! The mean voices were at an all time high! Round and round and round they go.
So, I decided to ‘boycott’ World Down syndrome day. There was to be no photos and no mention of it, neither in person nor on line. The mandate to wear mismatched socks would be ignored! I’m sure at this point God, even with Her abundance of patience and grace was over me.
From the moment I woke up I was in a bad mood and nothing was right. I purposefully choose to wear wedge sandals. But I couldn’t find the right shirt with the right hat, couldn’t find my electronic pass to get into work, the milk was spoiled, etc. Which made James and I late and rushing. Maybe if I had stopped resisting, things would have gone slightly better?
I’m thrilled to be once again producing the Academy of Country Music Awards Red Carpet Show for GAC. On the way in to music row, I had to drop James at day care. Somehow on the drive, while playing with his iPad his right foot became lodged in the arm of his booster chair. I have no idea how this happened. It probably couldn’t happen if I tried. But I hear him moan a bit, and look back to find his booster seat over his head, while the song “The Little Drummer Boy” was blaring out of his ipad. (He has a Christmas app that he loves, and his favorite right now just happens to be this song, so I hear it about fifty times a day!)
At the next red light, I put the car in park and turned around to help. There was no removing his foot, without removing his braces and then his shoes. WTF? I tugged as hard as I could, and it finally came out. James looked relieved and then scared. Unable to get him back in the chair, when the light turned green, I opted to let him sit buckled in the seat, sans booster chair, for the remaining two blocks. But this was upsetting to James. It was new. Different. And he doesn’t do that well. So, all the way I kept saying, “It’s okay buddy, we’re almost to school. You’re still buckled in.”
By the time we arrived we were both quite disheveled looking and James wouldn’t stop crying. It’s the little things that can really trip him up, and once he’s in a ‘mode’ it’s hard to turn that back around.
When I finally got into the office and opened my computer a wave of dread came over me. Emails, FB posts, all announcing this day. There was no hiding from it. The first post I read by my dear friend Randa said, “Celebrating this girl today and every day!! Happy World Down Syndrome day Lilli! Thanks for making this world a better place. We love you to the moon and back!” And then…God began to chuckle. And I began to cry. I felt slapped in the face. And finally, I landed in acceptance. And I realized that this day is NOT about ME…. it’s about celebrating my son. How dare I deprive him of that?
James and I are not that different in so many ways. If things don’t go well, it’s so easy to get derailed. Sometimes it’s for a few minutes or sometimes it can be for years. And we can easily stay stuck in fear and dread. Until we dislodge and embrace what is true.
The Little Drummer boy arrives to see the baby Jesus with the only thing he has to give, the playing of his drum. And just like him, we arrive at surrender and acceptance with only what we have, which on days like today may be nothing but an open heart.
James, Happy World Down Syndrome Day. Today, I celebrate you!