A few days ago I stopped by my friend's house to leave her coffee cup on her front porch. It was dinner time and I didn't want to disturb her, but instead, I peeked through the front window all curious to see their very well-organized and peaceful dinner routine. I know it happens. I've seen it before. I've been there when it all comes together like a well-oiled machine.
And there they were. Four children, half of them tow-haired, sitting tall and quietly partaking of a well-orchestrated family dinner. Cloth napkins on their laps. Chewing with mouths closed and using only the utmost manners and no-doubt the perfect, rehearsed prayer beforehand.
Nobody was flailing or reaching across the table to steal water from the flower vase, or reaching to put their hands in the cranberry sauce. Or dumping their plate upside-down. Nobody's chair was rolling over soggy cheerios. They talked about the wonderful things about their day with friendly tones and loving gestures, smiling and drawing attention to each other's good character.
I admit I was jealous.
I have always wished dinner was like that, could be like that. I dreamed of hands-held, prayers whispered, children chattering on about their day, about the color of the sky, about how amazing the salmon was tonight.
And then I sadly realize:
It's like that after she leaves the table.
The 8 year old.
I hate that I'm saying it, but after we've chased her around 15 times and sat her back at the table 15 times, after she's reached across the table to grab the entire chicken at least 4 times, and after she's gone to the cabinet to get the cheerios and gone into the freezer to put her hands in the ice cream, and after my bless-ed husband has spent the entire dinner spoon-feeding and bribing her with sauces and dips, we then
give her the ipad
so we can have a moment of peace and finish our dinner like humans.
We might have a chance. At that point. To hang on to some sort of family meal. And so we make them sit there a little longer- the ones who can speak and we force them to tell us about their day even though they want to be gone too....
It was September 23, 2017 and I sat on the corner of Pleasant Avenue and 26th Bay Street with tears streaming down my face (I work here and it's awesome). It was 9 am and the Geneticist had just called to tell me that they finally had the results from some research that CHOP had done back in 2014. I couldn't believe we finally had some answers. I let the diagnosis sink in.
She has an ASXL-3 mutation.
It's rare. It's Bainbridge-Ropers Syndrome.
My husband gave me flowers that night.
We are celebrating knowledge, community and growth.
Knowledge that our daughter has a genetic mutation.
We have joined a very small community online where we are getting support and encouragement.
We are growing in joy and tolerance for our "normal".
Even if our "normal" is slightly mutated.
