Thursday, August 26, 2010

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."


Deb said...

We have definitely got to get together for coffee soon. I think we could both use a big vent/laugh fest. ;)

Claire louise said...

That hit me hard and I have huge tears falling onto the screen of my iPhone as I type this. I too have these days and I just feel at times it's all a mess and little man hates me. He used to hit me often but it has stopped. Though now all his verbal attacks are aimed at me and I have at times lost it, screaming back at him. I once told him to just go away and leave me alone through sobs and tears. Of course he did just that! Lucky I had a friend with me who set chase as he went to board the bus. I had the baby and his sister (yes out in public) I never would of got him. His always beeping and repeating bus and train stations. Some days are so great others are really poor but I love him so very much as u do your boy. You haven't let him or anyone down! How could u have? This post was filled with love and that's what broke me.

Good luck to you and your family.

Katie Donohue Bevins said...

Hi Claire- Thank you so much for your kindness and sharing your story with such honesty and camraderie. The good days are great and the hard days seem never ending. I appreciate your words so much. Best, Katie

Gimky said...

I know. I know all of this.

Thinking of you, Katie. Wishing we were closer. xx

Katie Donohue Bevins said...

Gimky -- Thank you. I think of you often and hope you are still writing. What a treasure your writing is. I miss Once Upon A Snowflake. Best, Katie

Anonymous said...

Hey Katie,
It was great to see Sean at soccer today- there was a beautiful little girl just his size who immediately wanted to be his partner and didn't leave his side all through practice- they were so great together. I couldn't have dreamed it better. I didn't get to see Sean leave, but I talked to the little girl after practice to say how great the two of them did and how happy I am that they are going to have each other this season- she said, "it's easy, I have a little brother too." He looked so great out there. following directions, scoring goals, trying hard to remember to keep the ball in the middle for sharks and minnows. I'm so happy to have him back. His little girlfriend will be missing next week, but you can see her the following week if you come by. Let's get together sometime soon- love your dear little redhead, and your beautiful family. So good to be back in the season together again. -Kate

Anonymous said...

Thank you for sharing your frustration. I have a 6 year old son with autism. I can relate to your pain. Thanks.