There is a lunch I am looking forward to this week. Not because of the meal, the rare lunch out. Not because of the midday drinking, always treasured. But because of the company. There will be no awkwardness of the blind date of first friend meetings, there will be no question of will she like me, will she want to be my new friend. It will be enough for me just to sit across the table from her and know that she gets it, she gets why I sometimes sit in my car and cry after drop off.
She gets what it is like to be silently struggling in the corner.
This year, the dawning of my daughters’ first in full time school was met with such joy. I didn’t cry tears when I dropped them off. Instead I breathed a silent sigh of relief. I wanted to be free of them for eight hours. I wanted to sit and not have to worry about when the next tantrum is coming, what the next upset will be.
Sometimes I feel like that sense of relief is a bitter seed inside of me, poisoning my attitude. I think people can see it in my face, hear it in my voice, sense it in my soul. I want to cry out to them that I love my children with my whole heart but that there is a part of my that has indeed been broken by it, broken by them.
It’s a double edged sword this world of invisible disabilities. My children will never be stared at because of the way they look. They will never be discriminated against because of what people think they lack. They will never feel the pain of being shunned at first glance for something they can not help.
But they will never be championed for their bravery, for their struggle. There will be no make a wish trips, no ice cream sundae moments to make up for the hard times. And those hard times are there, oh they are there. The pain of my daughter’s face when she can’t break herself of the need to repeat a pattern only she understands… that pain is heart breaking, exquisitely heart breaking.
I want to shake her out of it. Shake her out of the need for that repetition. And sometimes, to my shame, I do take her and shake her. Not hard, not painfully, but it is still shameful because I know it won’t work. That it makes no difference. That if all it took was a shake, she would gladly do it to herself.
So instead, I grit my teeth and don’t give it, don’t change the pattern to accommodate her. Instead I hold her while she cries, and hold back my own tears while I try to comfort her, try to explain why it has to be this way, why she had to try to reorder herself. And I try to ignore the stares of the other parents, try to gloss over there questions of oh is she tired, oh is she hungry because to explain would take a million and one words, none of which I have the power to say.
And i sit in the corner, in the shadows, holding my daughter and looking forward to lunch. With someone else who knows what it’s like to be a shadow too.