There comes a time, probably many times, when you ask yourself – what do you want. What do you really want. And, if you’re lucky to figure that out, even for a small amount of time before things change and shift on you again, then maybe you have a chance at pruning the branches of your life so that your tree, and the branches that really matter, have the best chance at thriving.
I want to be happy and at peace and to be loved. I want to throw some good out into the world and be stronger, surer in the notion that what does not come to pass in this lifetime will, God willing, be rewarded to me and my loved ones in the next. I want the best for my husband and loved ones. I want my children to find peace and happiness in this world, to walk the sirat ul mustaqeen (the straight path) and find their best way between deen (faith) and dunya (the world).
I want a life of ease for D. I want peace and contentment to be his. I want his safety and protection ensured. I want him to be understood, for him to find his method of communication. I want him included, accommodated, accepted, treasured, appreciated. I want others to learn what I have learned from him – lessons not taught in school, on the streets or inside of an office. Lessons only learned by the intimacy of bearing witness to something other worldly, something extraordinary.
This year I did not write another 30-day Ali Family #AutismTruths series in April for Autism Awareness/Action/Acceptance/Whatever month. Three years of doing it had kind of brought me to a point of, what else is there left to say?
Well, a lot.
But the stories lie within D. They lie within me, too, as our lives as a family are permanently entwined in the way that only parents and children can live. But sometimes they must stay there – within. The private, personal and deepness that could be shared but is better left private, personal and deep.
I was helping D shave this weekend in anticipation of attending a function together. I’ve become adept at helping him shave, something I had never done before my own son needed my assistance – shave a man. There is a parental intimacy in this act that is in a way immensely beautiful while simultaneously painful.
I want him to gain his own independence in these things – these acts of self-care that others take for granted. The rite of passage where a father or mother teaches a son how to shave, and then the son does it, perhaps nicking himself in process until he gets the hang of things. The road to shaving was scary and exhilarating with D, first trying an electric razor, which scared him, and then moving to get him accustomed to shaving cream and a disposable blade.
The blade scared the hell out of me. What if he moves his face or jerks it? What if he gets mad? One wrong move and he could be seriously cut. And, he moves all the time. He changes directions at the drop of a hat, and as well prepared we are, we don’t always know what is going to happen.
But here we are, after several months of working at it, in a time and place where I can assist him in shaving and he moves his cheek, neck and even stretches his upper lip in mimicking my movement so I can get at the stubby mustache.
I wish he could shave himself. I am so thankful he is comfortable letting me help him.
And so, when I hear the latest autism rates from the CDC, seeing once again that the numbers are increasing, reading the articles that break down the data and seeing once again folks in the autism community take sides or multiple sides about things like the use of the word “epidemic,” or “alarming” or what have you, I retreat back into this world that is ours and keep my thoughts to myself.
Numbers and statistics aren’t going to change what I already know and what I am bearing witness to every single minute of every single day with D. At the risk of drawing the ire of autistic people who rightfully are proud and happy with who they are just as they are, I wouldn’t choose this life for D. It has been difficult, challenging and heartbreaking while also beautiful and breathtakingly trandescent.
But I don’t have a choice here in D’s autism. My choice is how I choose to live, how I choose to parent, and what I choose to fight for, how I help him and all my kids, where I choose to drown and when I choose to resurface.
The blade we use to help D shave is the thinnest margin between a smoothly shaven face and a painful disaster. I am acutely aware of that every time I enter the bathroom to help him. The line we walk on is razor-thin, and yet D walks it. Every day, with the strength of which I have never seen in anyone else. The very least I can do is walk it with him.