'The little things? They aren't little'

I left for work with a pain in my chest yesterday. Ben didn't want to get out of bed. He grunted, signed he was 'mad,' folding his arms in a combative stance, and refused to get dressed. It took a massive amount of cajoling to get him out the door. I felt guilty, knowing I was sending him to a place that causes him great anxiety.

Ben had a vocabulary test on the book The Count of Monte Cristo. I envisioned him having a meltdown when asked to answer the questions. I was waiting for a call from school. He often acts out, disrupting the whole class and needing to be taken out.

By 2 p.m. I hadn't heard a peep. I e-mailed to say I knew Ben was having a rough day. I was not expecting the answer I got:

"He did fabulous on his English test. He achieved a mark of 25 out of 31. The questions were not read to him. He did all the reading himself! Nice!"

Because Ben can't speak and struggles to write, he was given three definitions for each of 31 words, and had to circle the correct one. The words were things like "governor," "damp," and "dungeon."

In the past, his EA has read him the questions to make sure he understands. We're never sure of how much he can read or how fluently.

I took a deep breath and let myself feel giddy. I couldn't wait to get home and give Ben a high-five and check out which answers he got right. We'd read the book together, and I knew he had a good understanding (but often he can't demonstrate it). 

I cranked the radio and drove home happy. 

Until this thought came to me: "It doesn't matter because it doesn't change anything. It's not an indication of some big breakthrough. He's 19. Understanding some words from The Count of Monte Cristo is not going to translate into anything useful."

Despite this rain on my parade I arrived home and freaked out when I saw Ben and the test. "Woo hoo!" I screamed, giving him a high-five. "Congratulations!" 

I flipped through the pages and felt validated for the time I'd spent reading with Ben. He picked the right definitions for "Useless"--yes! "Dull noise"--yes. "Loosen"--yes. "Worth"--yes.

I couldn't remember the sign for "easy" so I wrote out "easy" and "hard" and asked him what it was: Easy, he said.

Before the night was out Ben began coughing. He signed that he felt "green." His brother's been sick so I thought he might be coming down with the same thing. On the other hand, he's been known to do a brilliant performance of uncontrollable coughing that abates as soon as he gets out of school.

This morning he stayed home and I wondered if we were in for a week away. Ben doesn't just get sick, he gets really sick. For days. Then it's hard for him to make the transition back to school.

My high from Ben's Monte Cristo success faded into a lament: he always gets sick.

When I got into work I read this post by Kate Leong, a mom who lost her five-year-old son with disabilities this weekend after he had multiple cardiac arrests. 

She writes about giving her son Gavin his last bath and massage: trying to memorize the touch and scent of his skin, cutting some of his hair to take home with her. Then she curls her body next to his for one last night and feels his presence.

In the end, that's all that matters, isn't it? The presence of our loved ones, not what they do, what they achieve. Their presence is enough.

It's so easy to focus on what we don't have, on ways we wish things were different for our kids, for us, so hard to keep our eyes glued to the moments of joy and content. 

This is it. Whatever odds we're dealt in life, we have to work with them. 

Disability is usually about what isn't, a list of things a child can't do relative to a typical peer.

We need to fill ourselves up with what is, and when it comes to our kids, 'what is' is immense.

Kate ends her post with this clip of Gavin feeling the cool lap of the ocean's waves.

"The little things?" says mindfulness teacher Jon Kabat-Zinn. "The little moments? They aren't little."