My Personal Miracle

Last week we celebrated Chanukah. Chanukah is the festival of lights, celebrating the miracle of the oil lasting the entire 8 days of the festival.

I have my own miracle of light here at home with me. A light that has entered our lives and filled them with life, and a light that has entered his own life too.

Asaf is my miracle of light.

I have been given the rare gift of truly meeting my son, of getting to know the person who was always there, hidden inside, waiting.

Since Asaf began communicating with us, everything has changed.

First came the discovery that he could communicate through typing. Then we discovered that he is smart.. That inside him exists a deep inner world full of thoughts, opinions, fears, knowledge, and humor that I had absolutely no idea were there.

Stop for a moment and really think about that.

Imagine having thoughts and feelings, wants and needs, and having no way to express them.Imagine being unable to tell others what hurts, what scares you, what you want or you need to feel safe .Dear Reader, Stop for a moment and really think about what I have written. Even imagining this fills me with dread and anxiety. Now imagine your child living that reality.

Bringing Asaf home to live with us was the best decision we could have made. He is happy. He is content and he continues to surprise us with things he has never done before.

He has friends now. Real friends. Friends he cares deeply about and who care deeply about him.

In just the past two weeks there have been so many firsts, each one expanding my heart a little more.

We went to a show together.In the past, I would never have imagined taking Asaf to a show. I believed he could not sit for so long. Now, I presume competence.

The show was designed for individuals with special needs.I watched Asaf sitting there, smiling, fully present.

We met two of his friends there and we went out together after the performance for dinner .  This is something I never would have imagined two years ago.

The following day, Asaf, Dill (his carer), and I joined our running group, "Running from the Heart, to participate in a half marathon. We were registered for 2 km .

Last year, in a different run, Asaf walked the distance. I was so proud of him. This year I was expecting the same. As the race began, Asaf ran together with Dill.

When Asaf first joined the running group he was incapable of running. Part of this is physical. Apraxia and dyspraxia make coordinated movement extremely challenging and his body does not always cooperate with his intentions.

Part of it was motivation. When the world does not expect much from you,it is hard to expect more from yourself.

And yet, there he was, with Dill’s encouragement, running the full 2 km like an absolute champion. At the end, we all ran together to the finish line while singing "Do Not Be Afraid." I cannot describe how moving it was. Being part of such a special group is a great privilege and a huge gift.

https://video.wixstatic.com/video/6f73bc_e5a9cca1d7d3455688f8ed3aba4bdf07/480p/mp4/file.mp4

We went to see another show called Simple Dreams the following week. All the actors have special needs, and each one performs his/her dream, with the support of the other participants.

This was their 444th performance.

It was not the first time I had seen the show but it was the first time Asaf had. Many of the actors are his friends from the running and cycling groups he attends. Watching his reactions was fascinating.

When he agreed with what was being said on stage, he became physically and verbally expressive; as if actively agreeing, as if participating from his seat.

 Asaf stood up at the end of the performance. He climbed the stairs onto the stage as if to say to the producer: I want to be part of this too.

In the audience that evening were 120 twelfth graders. Earlier that day, they had attended my lecture,A Voice from the Silence, and had been deeply moved by Asaf’s story. I was told that during their summary meeting, the students shared that seeing Asaf standing on the stage, making his happy sounds was a full circle moment for them.

This was the first time I had lectured to school aged children. Seeing my words about presuming competence truly sink in, was deeply and powerfully moving for me. For them to meet Asaf in the evening, not as a story, not as a concept, but as a human being, solidified something that words alone never could.

On the second night of Chanukah, Asaf invited a friend to light candles with us.

The excitement when they saw each other was impossible to miss. In their faces, in their bodies, in the way the room seemed to lift.

I am not sure who was more excited, them or me.

His friend brought a game called SPLAT. When his friend Shay ended up with a handful of cream on his face, Asaf laughed out loud. That alone surprised me. What surprised me even more was that Asaf agreed to play as well. He was clearly delighted when he too received a handful of cream on his face.

Joy. Shared joy. Messy, loud, unexpected joy.

Finally, we went to light Chanukah candles with my parents in Jerusalem. Watching my father light candles together with Asaf was profoundly special for me. And afterwards, sitting together in a restaurant, all of us around the table felt comfortable. And it felt right.

Chanukah is about light and this year light has a name.

Asaf.

It's not because he changed. I learned how to see.

When we presume competence, we do not create ability. We create space for people to show us who they have always been.

A Beautiful pre sunrise sky this week in Park Hamayanot