Losing Sean

Today I felt numb. Sad and numb. The reality of our situation over the past month has been on my mind, gnawing at me periodically during the day.

I am losing Sean. I always seem to notice this in summer, when the heat pours in and stills the days. When the summer is coming to a close and my husband and I look at each other like runners on the last lap, our hamstrings locking up, our bodies falling forward and our knees and elbows bursting with scrapes and pain. It's as if we have fallen to our knees trying to make it to the end -- not concerned anymore about our time or placing but only about being able to stay in the race and cross the finish line. It's the very least we can do for our son.

I am losing Sean. I am with him all day. I try to finish laundry, sweep the floor, make a phone call, clean up the dishes and he is there, next to me, his big eyes staring up at me and his voice, always a stammer, "Y-y-you talk to me, Mom?"

I try to let go of the heat and mess and stress and give him my attention, slowly I answer, "Sure, Sean, what do you want to talk about?" knowing full well what our conversation will be.

"Is there a Pixar movie that starts with a T?"

My mind scrambles and answer Toy Story.

Then he asks, "Why don't I have an L in my name?" I tell him he just doesn't but tears spring to his eyes, "But I want an L in my name."

We've gone as far as "renaming" him as Seanly -- he also desires a Y very badly, too.

He goes on and on about his favorite topics.

"I can kayak in the deep blue ocean?"

"Remember that stupid time in Kaneeta?" (how could I forgot -- it was Mother's Day weekend and he had a meltdown because it was too crowded.)

"I can like the Justice League?"

"Is there a person's name with a Q?"

"What's your favorite sea creature?"

I have answered these questions and others like it probably over 1,000 times (Yes, you can kayak. Yes, I remember Kaneeta. Sure you can like the Justice League. Quentin, Quinn, Quimbley, Queenie. Dolphin, I guess.) And so it is that I find myself losing bits of my son and bits of myself, swirling quickly down a dark drain with no hope of stopping it.

My neighbor stopped by to check on us. Kind and discreet. She came up my back porch steps, her eyes tender and I felt my own wet.

"How are you guys doing?" she asked.

I felt my heart tear a bit. She has been our neighbor for five years, ever since we first moved to Portland. Her daughter, older than my kids, played with Sean, outlined his hands and feet with chalk at the block party, helped him carve his pumpkin at our first Halloween and went swimming with us in the summers.

I said to her, "I didn't know it would be this hard."

I am lucky to have such kind good neighbors who try to rally around us. Some of Sean's behaviors are really intense and hard to contain. She let me know that she loved my kids, loved hearing Sean playing earlier that morning with his Superman cape chasing the cat around the yard. She told me that whatever we needed that she and her family were always there for support, help or an ear to listen.

"Thank you," I said. "Thank you very much."

And yet I still feel like I've let everyone down.

Yesterday, Sean wanted juice and I told him no more juice. He threw a bottle at me and I found myself boiling with rage, my back throbbing from where the bottle hit. I grabbed him by his shoulder and pushed him into his room. He thrashed and yelled, opened his window and tossed a couple of books out onto the lawn. I ended up having to subdue him by getting him on his back, sitting over him to pin his legs and holding his hands down above his head. I just held him, watching the wildness leave his eyes and face.

"I will let go, but you can't hit me, you understand?"

He nodded, "I understand."

He went to touch his hair and I thought he was going to hit me and I felt my whole body flinch and I covered my face. When I took my hands away, I saw him for the little boy he is, flushed cheeks, damp red hair, bright eyes, "What's wrong?" he said, his voice soft like butter.

I tucked him into bed that night and when he drifted off to sleep I held his hand and prayed to somebody, anybody to release him from all the struggle and pain and frustration that he has had to deal with his entire life. His small, sweaty hand, the pads of his palms swollen with blisters from the monkey bars, so small and full of promise and I couldn't understand why he had to carry such heaviness in his lifetime.

"Give him a chance," I whispered over the hum of the fan. "Please, he's my boy and I can't bear losing him."