i hate this sh-t

“I know no greater desperation than being helpless in the face of my baby’s pain.” ~ my facebook status last night

“Autism, please go f*%k yourself.” ~ a friend’s facebook status last night

**

Katie is struggling, but she’s doing her best to put on a good face for dinner. Her best isn’t working so well, but ya gotta give her credit for trying. She’s fighting a miserable cold and so far it appears to be winning handily.

She coughs, as one who is fighting a miserable cold is wont to do.

Brooke’s sensory system can not handle Katie coughing. From the beginning, it has been one of the most difficult things for her to process. The nearly five-year old social story on her shelf, When Katie Coughs stands as a testament to a long-fought battle.

She panics and screams. She covers her ears and scrunches into a ball in her chair. She curls her entire body inside her dress until she can barely be seen. If only she were a turtle.

I coax her out for grace and she chooses a Prairie Dawn voice for the team cheer. Katie coughs again.

Brooke’s entire body shakes. She turns to me, her eyes wide, hands open under her chin, fingers flexed, tears streaking her face. She looks to me to do something. Anything.

Katie coughs again. I open my arms to Brooke and she scrambles onto my lap. She grabs onto my neck and squeezes hard. Every part of her is rigid, tense. The tears won’t stop.

We try to offer incentives to calm herself down. Sometimes it works, changes her focus. The thread-puller, the reward du jour, proves useless. It’s obvious that we’re in way past external rewards. This is no longer something she can control.

Luau and I quickly decide there’s nothing to do but separate the girls. I pick up our plates and move our dinner into the den. I settle Brooke onto the couch and let her turn on the TV. She immediately switches to the DVD player. Comfort awaits. Elmo’s Happy Holidays fills the screen. Elmo will make it all right.

I walk back into the kitchen and kiss my big girl’s head. I whisper into her ear, “You know you did nothing wrong, right baby? You have to know that. I promise, you did NOTHING wrong, OK?”

She looks up at me and nods, then whispers, “I’m sorry.”

Damn it.

I go back to Brooke who is pacing in front of Elmo. “Mom, who loves Dorothy?” she asks as I walk into the room. Her face is a mess. Her eyes are swollen and red, her cheeks puffy and flushed.

Why does this have to be so God-damned hard? Why?

I answer her. “Elmo does, honey.”

She sucks in a jagged breath. “Could you tell me that, Mom?”

We try to work on this – on navigating socially appropriate dialogue. You have to be flexible in conversation. You can’t ask people to retell you something that they’ve just said because you didn’t like the format of their answer. But I just can’t put her through the paces. Not now. I say it the way she needs to hear it.

“Elmo loves Dorothy, Brooke.”

“Elmo loves Dorothy, Mom.”

“Yes, baby, he does, just like I love you.”

She has come back to the couch to sit next to me. I hold her and try to sneak in bites from her plate.

Katie coughs in the distance.

Brooke screams and turtles. Again. The tears come fast and furiously now. Her body shakes and her hands go rigid. She looks at me with pleading eyes and says, “I’m scared.”

My mother’s heart constricts and swells, then constricts again.

There’s a perverse moment of pride in the middle of the pain and desperation. She has identified an emotion. And shared it with me. She’s told me how she feels – still a precious rarity.

But how she feels is scared. Because her sister is coughing, my girl looks like she’s landed in the middle of a war zone. And I can’t make it better. Hell, even Elmo can’t make it better. And that furry little guy can do anything.

Katie finally goes upstairs to shower. I try to put Brooke at ease. “Katie’s upstairs now, baby,’” I say. “It’s OK.”

She repeats my words. She needs to convince herself. “Katie’s upstairs. Where’s Katie, Mom?”

“Katie’s upstairs, baby. She’s not here.”

I think back to the time that Katie inadvertently set off that damned Cookie Monster toy and Brooke couldn’t get past her terror. Wherever Katie was, so might be Cookie Monster. For three days she high-tailed it out of rooms that Katie casually walked into. Three days.

I walk into the kitchen to get her some rice and Luau and I find ourselves in the same place.

Katie yells down the stairs. She’s upset. She needs help. Luau says he’ll be right there to help her. I tell him I’m going back to Brooke until she’s calm, then we’ll switch.

He and I look at each other. Our children are across the house from one another. They can’t be together. We can’t be together. I look over at Brooke, who is still crying. I feel completely helpless. And torn. And tired.

I look at my husband and say what I feel.

“I hate this sh-t.”

I wipe the one tear that somehow escaped and walk back to the den to try to convince my girl that she is safe. To try to wrench her free of the demons that have held her hostage yet again.

It may not be particularly poetic, my friends, but sometimes pretty words just don’t fit.

I hate this sh-t.