There is a crazy amount of stress to be found in my everyday world. There are therapies, schools, and personal battles to be won. Always in my heart, there is the worry that I’m missing something.
Some diet, some therapy, some supplement, or something that could make his world better all boiling down to the fear that I am failing my son. If you are not very aware all the therapies, diets, and helpful things can overtake common sense until they are nothing but a source of stress and eaters of energy that can take over everything.
There’s balancing the thing of being pleasant and getting things done. There’s letting things go that have surpassed their usefulness. There is the understanding that even things that might benefit my son lose their meaning if they become unbearable to me.
There is finding, embracing, and holding tight to the faith that I am doing the best that I can and somehow, some way, when it is all shaken out that it will all have been exactly what he needed anyway.
There is no forever or one-time only fit, or absolute right or wrong on this journey. I must forgive myself. I am to allow myself to be overwhelmed, crazy, tired and sometimes flat out wrong. That is equally as important as accepting where I’ve been right or done something well.
Everything is an opportunity to grow from with tools to gather value in each experience to use towards the next. There is no forever here because everything moves along in a fluid way and in the end, there is nothing permanent that remains.
There is no therapy, program, or thing that works today that might not wear away with the next coming tide. What worked today might not in the next breath. I am to use what I find for as long as I can and let them go when they are done. There are only things to arm myself with as I move forward.
The thing of nice girl and non-confrontation must die within me. However, that is my private battle and not anyone else’s’ to deal with. I have made great strides here. I’ve learned to pull back, step up, and somehow not back down all in the same breath.
There is grief and a barely banked anger still roiling in me. The adjustment to the break of dreams, to the fear of what will be coming, to the outright fantastic anger that I feel at finding myself actually fucking here, is still burning in me.
But, it doesn’t require my attention the way it used to. I no longer find myself huddled with my face buried in my arms crying into my car’s steering wheel these days. Because, I am learning that I am the expert for my son Nicholas that it is up to me to make our way, that somehow with very little volition on my part-time will move us and that when things wear out their usefulness it is simply time to let them go.
I am learning that this story with its every word and thought has been weaving a tapestry to leave behind of the tale of the journey of my own recovery from Autism. It’s been about me and has had very little actually to do with him. It is we, the people who love Nicholas, who have a recovery to make if we are strong enough, if we are willing to embrace fully all the things in our lives, and if we choose to grow rather than to break.
Nevertheless, sometimes I can find a window by night. A window next to Nicholas’ bed when I tuck him in a tiny space in time where we are unhurried and still. I can sit there at the edge and hold his hand. I can spin out my dreams for him. I can see him tall, healthy, whole, unafraid and in my dreams of him I can hear the beautiful fully formed words falling from his lips.
I can hear all the words he has trapped inside tumbling out and his voice is unbelievably beautiful. I can stroke these dreams that ramble in my mind almost physically. And by that window, Nicholas shines through brighter than the silvery moon.
I chatter with him, his eyes will lock on to mine, and I can see all over his lovely face that he is listening to me. Sometimes he will answer me back with appropriate yes or no. Sometimes if I am speaking about something fun he will clutch my hand and I will feel the happiness rippling through his body in that particularly beautiful Nicholas way. Sometimes his eyes alight on to me with that strange smokey trick of light that makes them mirror so closely mine, and it tugs something deep inside of me to see myself so buried there. When his eyes find me sometimes, I can see just how deeply he loves.
My love sighs back with all that I have in the few simple words we can share. My hope, belief, and fingertips ruffle through his hair and make the curtains dance. There is an energy between us that fills the room. In that window with the moonlight spilling down, we have moments where we can reach each other.
All my dreams begin to rebuild tumbling into place like the sudden transformation of a kaleidoscope picture that has been unbearably beautiful but askew and hopelessly jumbled but then with some unseen twist, it is suddenly formed. The picture born from the skitter scatter becomes so beautiful it pricks my heart, fills my throat, and I can taste the tears that are always there sweet, salty, bitter, and flowing like an ocean tide. In those moments, I can linger with him before I lose my glimpse and he retreats to wherever it is that he must always go.
All my hopes are allowed to take flight everything that hasn’t gone right drifts gently away for a moment each night. We are together then, my son and I. When I see him there smiling out from deep beneath the smooth cool glass that separates us, there in that window of time, his face will shine and rival even the light of the most magnificent moon.
I gather those moments by the window and clutch them to myself. I wrap the gratitude in with the sweet pricking pain and because I know I’ve been blessed enough to find him there I can withstand it when he once again leaves me there. I know he will be back. I know we will find each other and that he will return to me. He’ll pick his way to the window again along the beautiful pathway of my dreams for him glowing bright beneath the gorgeous moon.
Very powerful story, and thought provoking!
Wow! A blast from the past. I believe this was one of the early pieces from back in 2010. I’d forgotten it. Bedtime by the window is still one of our favorite connecting times. Our do-over spot. Thank you for finding it again Angie and thank you for reading Kendra.
Loved your story.
Thank you for reading Eileen.