When We Revisited the Word 'Never' When It Comes to Our Daughter With Autism
“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 sentence.
Once, we couldn’t bring her into a room full of people and stimuli, knowing it would overwhelm her senses.
Once we didn’t know if she would be able to make and sustain friendships.
Once we didn’t know if she would ever reach 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 that our faith would never truly belong to her.
Once we didn’t know that we could teach her to cut with a scissor, or make beautiful music on an instrument.
Once, the simple act of drinking from a straw seemed too much. The only songs we might hear were the rote melodies and words she mimicked, memorized from her favorite TV shows.
Once, we heard the word autism and for a brief moment, our world came to a standstill. 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 us. We immersed her in therapies, and she displayed a fortitude and 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 entryway 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 and 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 turned to each other, my husband and I, and said, “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 and 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.
Follow this journey on Reflecting Out Loud.
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.