The sun is shining and the air is warm with the scents and sounds of a spring most awaited. You are swinging in the hammock in the backyard, spinning your beads on a twig with your hoodie pulled over your head and sunglasses perched on your face. God, you are handsome.
It seems fitting that on today, World Autism Day 2014, we have come to a point in our autism journey where the path has played a cruel, cruel trick on us. Where there seems to be no alternate route, where the road less traveled has seemingly dropped off into nothingness, and for once, I don’t have a game plan. Your grandmother tells me to find my strength and to move forward. But here and now, in this very moment, I don’t know how.
And yet you rock in the hammock, spinning your beads, making your beautiful sounds, soaking up the sun. What has changed? Everything. What has changed? Nothing.
For those of us living our lives with you, for those with autism and their autism families, Autism Awareness can be such a cliché. Are we really circling our wagons around awareness? Isn’t the world aware enough about autism? Shouldn’t we be about acceptance and action? What are we doing to help our children and individual s with autism? How are we improving our schools, helping our teachers be better trained, improving services, putting our money in the right kind of research, developing support systems and programs to foster more inclusion in our various communities? How are we teaching the world to embrace you as you are?
What does this all matter to you, my jaanu, my most precious son? To you in your world, in the life you live with us, what will help you most? What can we do to help you?
Because today has shifted the ground I stand on. The earth is sliding beneath me, and I’m questioning every decision I’ve ever made, everything I’ve ever done, every time I ignored something that shouldn’t have been ignored, or put you on the back burner to take care of the other million responsibilities I have to our family. The prayers I’ve prayed, the verses from the Quran I’ve clung to, the du’as others have offered time and time again for you – they all ring hollow to me in this moment.
It’s fitting that this morning, when we stood on the precipice of that great unknown, praying for the best, fearing the worst, that both of your grandmothers sat beside you and prayed over you. The words of faith bubbled to their lips freely and fully. Their strength in God’s will, in His mercy and His plan was pure and steady. But I? I stood silent. I was empty, waiting for you to fill me with your light.
I’m sorry my darling. I’m sorry. I’m sorry. I’m sorry for how hard it is, I’m sorry that I don’t know what to do. I’m sorry when I make this about myself, when it should always be about you and your brother and your sister. I’m sorry that you bear the challenges and struggles and burdens more so than anyone I know. I know that by doing this, you are teaching us things more deeply and more patiently and with more love then I sometimes believe is humanly possible.
Today is World Autism Day, and that doesn’t really mean a damn thing to me in this moment. I dare say you probably feel the same, though I cannot presume to know what you are feeling. What I do know is that you patiently and loving endure. You endure, and you keep moving forward, even when I stand frozen in place.
My darling boy, all I know is that the only truth is love. You are love.
Love, your Mamma