For me, the quote would go like this: “If you live to be a hundred, I want to live to be a hundred plus one more day, so you’ll never have to live without me.”
This sentiment has been expressed in so many essays, in so many conversations, in so many unspoken, up-all-night worry sessions by parents of special needs children. We want our children to grow up with the tools and abilities to live life on their own terms. We want the world to be welcoming to them, embracing of their differences and supporting them in however they need. But we also know the realities. I know the realities with my son, Lil D. I don’t know the future, but I know the present. And so I must be practical.
It’s a beautiful, scary, trust-needing, trust-losing, joyous, heart-breaking, love-filled and difficult world he is growing up in. A world in which he needs so much support. Support is what we are trying to eliminate. Words, or a means of communication, are what we are trying to arm him with. Self-advocacy is what he needs to learn. Coping skills are paramount. And what scares me is not being there for him. Not fighting for him and pushing him to learn and be independent and watching out for him.
What scares me most is sending him out into the world every day and praying he comes back to me safe and sound and unharmed — physically and mentally. Because if something were to happen, he would be unable to tell me. And yet he goes out, every day. We trust him with his bus driver and bus aide, his teachers at school, his therapists who take him out for community-based instructions and a thousand other unnamed beautiful souls who take it upon themselves to transport my son, teach him, look out for him, protect him, and help him do for himself. At times they fulfill that trust-covenant with Lil D and us, and at times they do not.
I send him out, praying over him every morning when he steps on that bus. And some days the foreboding travels from my gut and catches in my throat, paralyzing my breath and squeezing my heart with fear. It lasts mere moments before I collect myself and start to breathe again before I head back inside to get the other kids ready. But it lingers over me the rest of the day, with a vague, unsettling and uneasy heaviness until he walks back into our home again.In October, Avonte Oquendo, a 14-year-old boy with autism, who was nonverbal and in need of many supports — much like my own son — walked out of his own school in Long Island City, New York, past a guard and disappeared into the city. The city rallied and plastered his face on subway stops, street corners, lamp posts and everywhere possible in hopes that someone would recognize the boy, realize he had autism and bring him to the authorities.
Today, sources reported that body parts that washed up in Queens last week have been identified to be that of Avonte. Oh his parents, his family. To not know for so many weeks where their baby was or how he was. To worry night and day about their son, who couldn’t speak for himself, who needed help eating, who’s autism made many things so difficult for him — this son who was lost the big, bad city. To know that one morning he went to school and then just walked out — and all those entrusted to look after him and make sure he didn’t wander off, that he was safe and sound, slipped in their vigilance.
That’s our collective worst nightmare come true. And now, according to news reports, this dear, sweet boy is gone. I can only imagine his family’s heartache. But at least the not knowing is over, though what comfort can that provide?
Ya Rabb, I do not understand why things happen the way they do. Why miracles happen sometimes and sometimes they do not. Why some prayers are answered and others are not — and what Your wisdom is behind all this. Why innocents must suffer and families must mourn and hearts must break. I do not understand. Please, God, help his family. Surely, fa inna mal usri yusra. Inna mal usri yusra.