Let Me Experience Life

The end of this summer brought with it so many firsts for Asaf.

He went to the movies with friends from his running and sports group.

He went bowling with them.

For most 26-year-olds, neither would be something their mother would think twice about.

For Asaf, they were firsts.

And then came a much bigger first.

We went camping at the Kinneret with a few of his friends.

Asaf had never slept outdoors before.

I didn't know how he would feel about it. Sleeping somewhere unfamiliar. Being outside all night. The sounds, the heat, the lack of the familiar comforts of home.

But he loved it.

In fact, he didn't seem to want the evening to end.

Even after he had gone into his tent, he lay there on the mattresses looking up at the stars.

I remember looking at him and wishing, just for a moment, that I could be privy to the thoughts going through his head.

What was he thinking as he lay there beneath the night sky?

The last time I looked in on him was at 1:30 in the morning.

He was still awake.

Still lying there beneath the stars.

For most of Asaf's life, I have looked at him, and wondered what he was thinking.

Now, sometimes, I get to ask him and receive an answer.

A few days later, when he typed about the camping trip, he told me how much he had enjoyed sleeping outside and feeling nature around him.

I didn't have to guess whether the experience had mattered to him.

He could tell me.

And then came our family day.

Getting all five of my children together doesn't happen very often anymore. They're growing up. They're busy. They have their own lives and schedules.

But I'd said to them that we needed to find one day when everyone was free, and we could all do something together.

And, somehow, we managed it.

We went rafting.

From the moment we got into the car, Asaf was excited. He was singing along to the music, happy and completely part of everything going on around him.

At the beginning, we split into two rafts.

In one were me, Ramil his carer, Ayala and me. In the other were his three other siblings.

After we had travelled about halfway down the river, Asaf did something that completely blew me away.

He stood up, and signed that he wanted to change rafts.

He wanted to be with his siblings.

So we stopped, and he crossed on to the other raft.

And suddenly, there were my five children together in one raft.

At one point, Asaf was sitting at the back of the raft next to Noam. Noam had his arm around him, and Asaf was playing with Noam's hair.

I just watched them.

Two brothers.

Such a simple moment.

And yet, for me, it was everything.

Later, my five children went down a small waterfall together in their raft, while I watched from the other one.

There was laughter. There was joy.

And I remember thinking how incredibly special it was simply to see all my children together, enjoying each other's company.

Then the kids encouraged Asaf to get into the water.

The water was freezing, about 12 degrees Centigrade (53F) despite it being a 35-degree day. (95F)

I watched him.

I could see his hesitation. I could see him trying to work out how to move his body from the raft into the water.

And around him were his brothers and sisters.

Encouraging him.

Cheering him on.

Believing he could do it.

Nobody was treating him as fragile. Nobody was deciding it was too difficult for him.

They simply believed their brother was capable.

Noam and he slid into the water from the side of the raft.

Asaf got the shock of his life from the cold and climbed straight back out.

But that wasn't the point.

He did it!

I see something happen when the people around Asaf believe in him.

He tries.

He pushes himself.

And every time he does, another little boundary that has existed around his life seems to disappear.

Afterwards, we went for a meal.

Asaf sat at the table with all of us. He ate. We laughed. We talked.

And everything just felt so incredibly...

normal.

I know that word can be complicated.

But when you have a child with significant disabilities, ordinary family moments aren't always ordinary.

There have been so many occasions over the years when we've had to think about whether something would work for Asaf. Whether he would cope. Whether we could manage. Whether it might simply be easier if he didn't come.

That day, I wasn't thinking about any of that.

I was sitting at a table with my five children.

Just us. A family. Enjoying each others company and the food.

After the rafting, I said to the kids:

"Our next family holiday abroad has to include Asaf. There is no way we can leave him behind.”

I don't know where we'll go or exactly how we'll make it work.

But we'll work it out.

Because now I can picture it.

Me and my five children, somewhere in the world together.

And what an incredibly special holiday that could be.

A couple of days later, I waited patiently for Asaf's typing session.

I'd watched him throughout the rafting day. I'd seen his excitement, his hesitation, his determination and his joy.

But I wanted to know what he thought.

What had the day meant to him?

And when he finally had the opportunity to tell me, what he typed brought these last couple of weeks together for me.

He wrote:

"My desire to experience life through experiences is deeply meaningful to me."

And suddenly, these last few weeks came together for me.

The cinema.

Bowling.

Sleeping beneath the stars.

Feeling nature around him.

Rafting.

Choosing to be with his siblings.

Getting into that freezing water despite his hesitation.

These weren't simply a collection of successful outings.

Asaf wanted to experience life.

And perhaps that sounds obvious.

He's 26.

Of course he should.

But for so much of his life, the focus has been on what Asaf needs to learn.

Life skills.

Independence.

Communication.

The things he needs to be able to do.

Maybe we haven't asked often enough:

What does he want to experience?

What hasn't he tried yet?

What might he love if we simply give him the opportunity to try?

For so many years, other people told me what Asaf's life would look like.

And for a long time, I believed them.

I thought my job was to prepare him for the life that was available to him.

Now I think perhaps my job is to make sure that as much of life as possible is available to him.

To open doors.

To give him opportunities.

To encourage him.

To believe in him.

And to stop deciding the limits of his life before he's had the chance to experience it.

Let him try.

Let him discover what he loves.

Let him experience life.

Sunset at the Kinneret