My daughter shrieked.
It was that air-tearing, earth-ripping shriek that she gives when she is mad and won’t reach for words, it’s the shriek that always fills me with fear for her future, that someone will hear that and think she’s incapable of understanding, that she’ll be shoved down to the ground at some point with a cop’s hand at her throat, crushing her to her knees, as it will forever break my heart that Ethan Saylor was.
I overreact when I hear it, most always.
I overreact because I’m scared, because I want her to be safe, because I love her so much.
I want her to hold those shrieks, to contain the wailing moans that she might emit when displeased, those sounds that are almost a hallmark of an intellectual disability. I want her to learn to express herself in ways more easily translated to a mainstream world that has been conditioned to view her as less-than.
Without thinking, I belted out “NO! NO! Don’t shriek like that! NO.”
She was in the throes of it and still shrieking and I reached over and spanked her and repeated, “NO“.
I turned to her brother, and yelled, “what are you doing?! Don’t make her so mad, what are you DOING?!” and I spanked him too.
Both children became quiet and looked at me, eyes full of tears.
I was so upset by everything that I didn’t immediately feel bad about spanking them or yelling at them; I was still full of the fear for a future in which my daughter might be fully grown and still shrieking like that.
A future in which a strange someone with power over her would hurt her because of how she expressed herself. There is nothing that I want so much as for her to learn the when and why’s of expression, to be able to reach for signed language or verbal language and make herself known and understood.
We finished getting ready for the day, I dropped them off at school.
When I climbed back into my car, I sat and all of the sudden, tears flowed.
The layer of fear – for a possible future for my daughter – the layer of memories – my own past, rife with abuse – merged and all I felt like a huge, heavy cloak had descended upon me, stifling and crushing me in the weight of its dark sorrow.
In a moment like that, I reach for something in my mind’s eye, something bright to hold on to.
In that particular moment on that particular day, I thought of the birds at a park and the beautiful water and trees, so despite the many errands I had to do and work I needed to plough into, I headed to the park. I walked and cried, let everything flow and go and sat and watched the birds, the wind upon water, the meeting of Mauna Kea and the sky.
The heaviness remained with me, and with it was the familiar urge to cut myself.
It always comes when there is a trigger and a flip, like what had happened that morning. It’s not just cutting myself, it’s any kind of self harm, really. And it’s not that I do any of this (anymore); I quit cutting myself when I became pregnant with my first child. I no longer drink or smoke; I don’t do any drugs whatsoever. But the urge to cut and hurt myself is very much there.
Maybe someday I’ll understand it. But at this moment, it feels simply like it might be a way to balance pain, that my mind reaches for this because it seems like it would help stop the heart and head pain that goes on. In any case, in these moments,
I hold still, hold tight. I breathe. I DO NOT MOVE, I can't move, I need to just get through this, breathe, I know it will go away, I just need to not give in, breathe, don't move, be still. Hold tight.
And then it does – it fades.
It goes away.
The feeling dissipates, I’m left simply with the feeling of sadness that I spanked my kids and yelled at them when it means so much to me that I not. I’m disappointed in myself. But I can handle that and I have tools for that, I know I’ll be able to talk to my kids when they come home and I’ll apologize and I’ll make a plan to be a better mom and I WILL be a better mom and I know I will because I’m getting better and better every day, in every way.
This is what it’s like for me to parent with Complex Post-Traumatic Disorder (C-PTSD), to grapple with mental wellness.
It might be harder in some ways because I have a child with an intellectual disability, I am not sure, but I do know that if it’s harder, it is likely to also be easier.
What I mean by that is, my daughter might trigger some points for me by dint of her particular disability, but she also contributes to my peace, joy and balance: later that same day, she gave me a drawing she had made of us and a rainbow. My heart then promptly exploded with ALL THE LOVE.
These things are always balanced, I think: we have what we need and we need what we have.
In a similar vein, my being deaf helps and hinders.
I can’t hear, which can be hard, but I can’t hear, so I am spared. It’s not always a bad thing to not hear.
I sit with my friend at the beach, we are watching our kids play together.
She tells me things she hears, snippets of things people around us are saying. I marvel at it all; I had no idea! And I’m also pretty glad that I don’t hear any of that, even with my hearing aids on, I simply hear nothing.
It’s fine that I don’t hear any of it. It’s stuff I don’t need in my life.
Stuff that’s fun to “hear” via my friend, fun to laugh at, but ultimately, it would be clutter for my brain if I could hear it for myself, anytime, anywhere.
I can normally see wonderful things about the presence of disability in the world, in a person’s life.
It’s normally pretty easy for me to see the positives that a disability brings, be it a particular perspective, a way of perceiving, a hearing, a sense, a sight, a touch.
It’s not easy though, for me to see the positive in C-PTSD. It’s not easy for me to see the good in something that makes me want to flay open my flesh, not easy to see the good in something that can hurt so much that I need to physically hold myself to get through it.
Am I being too honest?
I might be.
Mary Oliver said,
Someone I loved once gave me a box full of darkness.
It took me years to understand that this too, was a gift.
I liken this – C-PTSD – with that box.
That somehow, in someway, this darkness better illuminates the brightness that I work so hard to allow to shine through.