So, while I was shelving nonfiction at work yesterday I came across this book. It immediately grabbed my attention because I’ve become pretty familiar with all the books on autism in our catalog, and this is one I haven’t seen before. A small, cozy of a book that wouldn’t be chock full of doctors pointing fingers and lecturing about diets and therapy. Huh. At that moment, in that stack of books, I needed to hear a few stories that sounded like mine.
Now granted, going in I didn’t expect too much. Maybe a sweet devotional about how little Jimmy would triumph all. Probably a little God and grit to get us through the hard parts. And to tell you the truth, that story would have been enough right then.
And there in those first pages I was gutted. I sat there, watching as the words on those pages pulled at all the broken parts inside me I’m constantly hiding. The fear of a future that may break him, the guilt of feeling as if I need to explain him to others, the frustration and raging at the storm for being so unfair, the heart shattering sadness of not being able to make everything better for him. The first story Part of the Gift is about Sawyer, a three year-old boy whose father is coming to terms with his son’s diagnosis and the everything that follows.
“Everything becomes a race against time…I look at his being in diapers at age four as a defeat. There is a theory that children have something called a language acquisition device, a process where they gain speech at a faster rate than adults. I worry that Sawyer will miss some magical window to master language…I feel for him, but I feel the pressure of time more. I know that we have to press forward. I want to push past the situations that prevent Sawyer from normalcy and that squeeze my heart like a peeled banana in a baby’s grasp. Sawyer wants to badly to be friends with kids he sees on playgrounds. But without language, he simply goes up to kids and growls at them like Simba in The Lion King.”
And there it was. There was my son. There were the clock beating in my chest, the whispers coming from the dark, shadowed places in my gut. The defeat. The fear that we’ll never get on the right track, that I’m too late, that I dropped the ball, and I have to set things right for him. Arm him to the best of my ability. I am in a constant drive to heal, to fix.
And then there are the other moments. The quiet ones when we’re holding hands on the couch watching his favorite movie. And I know me. I understand us. I stop diagnosing and just let things be. This is my boy, the one I carried, my first, the person whose patience shaped me into the woman I am. I’m capable. And he is still Phoenix.
“I push Sawyer on our old metal swing set as I sit in front of him. I really want to stop, but because at one time, he didn’t like swinging, I renew the pushes as he makes the sign for more. With every push, I want to believe that the sensation will make his autism better. Lessen the affliction. But this small task, the simple act of giving a loved one all that he wants for the moment, is powerful. These moments with his laughter and my hands on his knees pushing him as we feel the warmth of the sun behind western clouds, are so good that it makes me believe that the future will be good.”
“If silliness, learning, and his family are enough for Sawyer, why can’t it be enough for all of us? My worry of the future has turned to savoring the slow progress…and without worrying about the future, I am in no hurry for him to catch up as long as he is happy. And he is happy.”
Sometimes I just need to remember it’s enough. That we’re enough. That if he’s smiling and laughing then we’re just fine. Maybe a little different than you’d expect, but we’re okay being the outsiders.
We’re okay staying strange.