There is nothing in the world so much like prayer as music is. (William P. Merrill)
Once, we didn’t know if she would ever utter a complete & coherent sentence.
Once, we couldn’t bring her into a room full of people & stimuli-knowing it would overwhelm her senses.
Once we didn’t know if she would be able to make & sustain friendships.
Once we didn’t know if she would ever reach or achieve the milestone of becoming a Bat Mitzvah.
Once we were afraid to hope too much, ask for too much, pray for too much.
Once it seemed there wasn’t room for her in our faith. She would exist on the periphary, never being able to believe it truly belonged to her.
Once we didn’t know that we could teach her to cut with a scissor, let alone make beautiful music on an instrument.
Once, the simple act of drinking from a straw seemed too much to ask of her lips, her mouth. The only songs we might hear were those she mimicked, memorized from her favorite TV shows. Rote melodies and words….
Once, we heard the word autism and for a brief moment, our world came to a stand still.
But, we loved her too much to remain in a place of helplessness. We owed her so much more than that.
So once, we fought for her. And she fought alongside of us. We immersed her in therapies, and she displayed a fortitude & a perseverance that, in the company of that support, brought her forward, tiny step by tiny step.
Once, the world overwhelmed her. A clown, a bright gathering of balloons, the sounds of a crowded space. But we did not retreat. She allowed us to slowly expand her world, safely, with trust… inch by inch.
Once, she carved out an entry way into her faith, embracing it as her own, determined that she would have a place, amongst her peers.
Once, we began letting go, allowing her to try, to stumble, to feel her way through, so she would know autism did not own her, it simply inhabited her.
Once…. once we didn’t see her standing on the bimah, guitar in hand, surrounded by her peers, leading a congregation in prayer & song.
Once we didn’t see that smile, full of pride… her smile, our smiles.
Once, our hearts broke–sometimes they still do.
Autism has changed her journey. Not simply once, but forever.
Once we didn’t know where that journey would take her. Today, we still don’t.
So we take in the moments… always.
And last night, as we watched a very special song leader, our hearts filled with pride. We kvelled and turned to each other, my husband and I.
“Remember when we never thought this would be possible?”
Once the word never occupied a space too painful to bear. We tucked it away, choosing instead to focus on maybe, perhaps, one day…
And on this Sabbath eve, we quietly revisited the word never.
Never underestimate her.
Never give up on her.
Never forget the quiet courage she displays each & every day.
Never be too afraid to hope, to dream.
Never stop giving her the tools, the chances, the opportunities.
And never forget the moments, when we get to witness the incredible blessing of watching her do, what once we thought could never be done.
In prayer, and in song… and in watching her, her love of music, her love of faith, her love of Jewish community, she shared with us a gift. It’s her gift.
And that we will never give up on.