We were at my nephew's birthday party, and I felt as if I were watching the scene that had sucked me in to the show "Parenthood," the one I wrote about in which during a family party the father sees his son with Asperger's in the corner, playing video games, while the rest of the family relates to each other and enjoys each other's company. There was noise and unfamiliar faces and lots of activity and kids laughing and chasing each other, and then there was Ethan on the staircase with his little laptop, learning how to solve mazes, taking letter quizzes. But wait! I wanted to shout out to his cousins and his cousins' cousins; I wanted to shout out to everyone. This little guy really is a delightful little person. Don't take what you see at face value. Make the effort to know him. Someone make the effort to get to know him.
"Sometimes I just don't know how to deal with it, being such a melancholy person," I said to Dan the next evening, as we were reviewing the weekend's events. "You know me. You know the way I cry at everything. I feel this weight of always wondering when the next moment's going to come with Ethan that's going to tear my heart apart."
Yesterday was day one of vacation week. While Ethan was sleeping Anna designed yet another one of her elaborately creative plans that involved turning the downstairs into a mini children's museum. There was a pretend candy-making room, the trampoline room and the ocean room, complete with a touch tank (a plastic bin filled with water and sparkly pipe cleaners bent into fish shapes). "This is for Ethan when he wakes up," she announced.
I looked around and wondered what my concrete-thinking, pretend-play disliking boy would do about all of this. "How about the touch tank?" I told her. "Let's see if he likes the touch tank."
Ethan woke up miserable, in that crying, clingy way all kids have in which they don't want to do much of anything.
"Ethan, look what I made for you!" Anna exclaimed when we got down to the kitchen. "Let's play in the touch tank!"
"Noooo!" he wailed. "Snack!"
"We'll wait until after snack when he's feeling better," Anna said. But after snack, when asked Ethan again wailed no. He didn't want to go near Anna or her touch tank. I went upstairs to get something, my nose tingling. I could feel my extremely sensitive side kicking in, the part of me thinking about my big girl creating something for her little brother that he didn't understand or appreciate. My eyes were tearing at the thought of her being let down, at the thought of her working so hard to engage her brother. It wasn't fair that she had to work so hard sometimes.
I remembered not long ago praying with Anna that she would find a lost toy, and telling her that God cared even about the little moments, like when we were sad that a favorite toy was missing. God, this is little, I prayed, but my heart is hurting here. Please help him to play with the touch tank.
Back downstairs I met up with Anna. "We'll add bubbles to the tank!" she said excitedly. "That will be motivating." That will be motivating. Wow. That girl was paying attention during Ethan's therapy sessions.
And so my spunky daughter poured in some dish soap. "Come on Ethan, look!" she urged. He inched closer. "Touch the crab!" she ordered.
"He doesn't understand that's supposed to be a crab," I told her gently.
"Then, touch the circle!" she encouraged. Ethan did so. His eyes lit up at the bubbles. He bent down and touched them. In a moment, he was picking up the pipe cleaner fishies as I was and dropping them down into the water, then bringing them back up from the bubbly abyss again.
We were late getting out of the house to go grocery shopping. Bubbles got on the floor and I had to change Ethan's shirt. But after a bit of wooing, some creativity, and perserverance, Ethan and Anna played in that touch tank, and they had fun doing it. Thanks, God.
"You see what I mean?" I said to Dan, recounting the story later. "There are a million stories like that, waiting to happen. I'm dreading the day Anna tells me she wishes Ethan didn't have autism, that her cousins are easier to play with. It's going to feel like my heart is breaking in half."
"But in some ways that is true," he replied. "What if you just acknowledged that, but didn't let it rip your heart apart?"
Retelling it here, Dan comes across as more cool and dispassionate than he was in reality. I knew what he meant, and it stopped me in my tracks. He was talking about acceptance. Part of my struggle is very much about all or nothing thinking, about the unrealistic notion that the only way to escape pain is to avoid pain. What about acknowledging that yes, there may be times that my son is made fun of, my daughter feels her life as a sibling is unfair, our family may struggle, but -- that's not the end of the story. Joy and struggle can exist simultaneously. Heartache and hope can beat together.
What if I let myself feel the hurt of what is but then let that moment go, gave it back to God, or at the very least asked Him what He could do with it? Maybe there would be many more touch tank moments. But even if there weren't, what if I remembered that there is a difference between just all being well, and all being well with my soul?
The latter is often borne of suffering. That is the crazy thing. That is the beautiful thing.
Tuesday, February 22, 2011
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