“The one redeeming feature of this evening is that, for all intents and purposes, it’s over. Autism – one. My family – none. God, this just sucks sometimes.”
~ My Facebook status last night
We’ve just finished dinner. Brooke struggled at the restaurant, and though she got it together, she’s been walking the edge of the precipice all night.
She’s asked for a special treat. Rather than choosing a small piece of candy at the shop down the street, she’s asked to go to the ice cream parlor. I don’t have it in me to say no. I just want my girl happy. If a scoop of ice cream can do what I can’t, well then get the kid some ice cream.
Katie opts out, choosing instead to stick to the candy shop. She and Luau will meet us at ice cream.
Along the way, Brooke begins to cry. She can’t tell me why and I can’t find any obvious reason for her tears. I try to distract her, but anything that I say seems to fuel the fire. I’m at a loss.
As soon as we open the door to the ice cream parlor, I feel the noise. Thanks to Brooke, I don’t hear it – I feel it. It’s heavy and thick and permeates the space. I offer her her headphones, but she shakes her head, “No.”
We get in line to order. Within less than a minute, Brooke is no longer crying; she is sobbing. Her frustration is palpable. She looks like a mouse in a maze, lost, angry, impotent. She spins and bumps into the line divider. She looks up at me, pleading. Though she doesn’t speak, her tear-streaked face couldn’t be clearer. “Do Something, Mama,” it shouts. “Please.”
I try everything I’ve got. I crouch down and pull her to me, slowly, gently. As much as I want to spin and cry and scream along with her, I will myself to stay calm. I speak softly, clearly.
This is what we do, isn’t it? As our babies ramp up, we slow down? Fighting every instinct, because this life we lead simply does not allow for a natural response.
I offer to ‘do the Sesame Street voices.’ The very same ones that we did all morning. And all night last night. The ones that drive me insane, day after day after day. “What do you want Prairie Dawn to say, baby?”
She looks at me as though I’ve come at her with a branding iron. “NO!” she yells – pained, frightened – at the prospect of one of her favorite things. Up is down and black is white and nothing makes sense when the demons get too big.
I try to sing softly in her ear. I ask her what Mary Magdalene said when Jesus ate the wood chips. I ask what Mr. Noodle did with the banana. I ask repeatedly if she wants to leave. No, no and no. “I will get ice cream,” she says, the words nearly swallowed whole by a jagged breath. A hot tear lands on my cheek. Then another. I wish to God that I could DO SOMETHING. I offer the headphones again. “No.”
I see another mother on line staring at us. I don’t read into it. I don’t have the time to wonder if she’s judging us or is simply curious. My energy is fixed in one place. And there it will stay.
Brooke is now crying uncontrollably. The sadness is so much bigger than she is. Just a whisper shy of eight, she is still a tiny thing. She could pass for six or even five if pressed. And this …this thing .. is just too big for that tiny little body. It’s too much. It’s just too much.
The only words she has left are, “I’m crying.” They are drenched in tears. They do no more than taunt me with their statement of the obvious. They offer no insight, no explanation, to roadmap to help. Yes, honey, I say, again and again, “I see that you’re crying. I want to help.”
Luau and Katie finally arrive. I ask Brooke if she wants to go outside and Daddy can get the ice cream. We all but run for the sidewalk.
My girl is a mess. There’s no pulling it together now. Try as she might, she cannot stop crying. Katie tries to distract her. She points out Sesame Street characters in the window of the stationery shop next door. Brooke tries, God she tries, but the thing is just too big.
Luau comes out with the ice cream. She holds it, but won’t take a bite. She finally offers something. “I want to go home.” She repeats it again and again. It’s all I can do not to scoop her up in my arms and sprint to the car. Home. That I can do.
Luau and I met at the restaurant earlier, so we have two cars. As we walk, I tell Brooke that I will drive Daddy’s car. She and Katie will come with me and Daddy will meet us at home. She has a different idea. “I will go with Daddy,” she says. “You will take Katie.”
Her shoulders shudder. The tears spill to the ground.
I feel like I’ve been slapped. try not to show the hurt. There’s no space for it.
Her My frustration is palpable. She I looks feel like a mouse in a maze, lost, angry, impotent. She I spin s and bump s into the line divider Katie. She I look s up at me God, pleading. Though she doesn’t I don’t speak, her my tear-streaked face couldn’t be clearer. “Do Something, Mama God,” it shouts. “Please.”
Katie reaches for my hand as we walk to my car. She’s having trouble keeping up, but I can’t slow down. We have to get home. My girl may have pushed me away, but when she says, “Mama,” I’ll be there.
Katie is upset. I kept up the facade as long as I could, but the dam broke. Tears stream down my face as we walk. “Mama,” she says, “I’m so sorry.”
I try. I really, really try. I don’t want to talk. I just want to get home. “Oh, baby, there’s nothing to be sorry for or about.” I’m struggling to keep my voice even, calm. She deserves that. No less than her sister needs it.
“Mama,” she says, “I just need you to listen for one second. Can you do that, Mama? Just for a second. We can keep walking.”
“Of course, honey. What?”
“Just four words, Mama, OK? Just four.”
We’re nearing the car now. Almost there.
“It’s not your fault.”
I open the car door and she jumps in.
“Oh, baby girl. I know that. But thank you for saying it. Thank you.”
“Just remember that, Mama,” she says as I climb into the front seat. “Just remember that. Cause even though you know it, I’m not so sure you believe it.”
I’m speechless. This child is ten.
I turn on the car with a sense of urgency. We’ve got to get home.
I don’t know where to end this post. I can stop here and leave it at that. With a ten year-old sage who sees straight into her Mama’s soul.
Or I can tell you how, in a fog, I drove the car up and over the curb pulling out of the parking spot. I can tell you about the nauseating sound that the came when the concrete tore the bottom of the car or about me crouching beneath the body pulling mangled pieces of plastic from the frame.
I could tell you about the woman with the wire cutters who made it possible for us to drive home, all the while wondering what in hell that wire was supposed to be connected to. I could tell you about picking up the pieces from the road, gathering them together and laughing through tears at the obvious metaphor for the whole night.
I could tell you about the car ride home when Katie so valiantly tried to keep it light, but I couldn’t do light. How she kept asking if I was all right and for the life of me I just couldn’t figure out what to say.
I could tell you how I snapped at her when we got home – how I was running up the stairs and she said, “Can I just have some Mama time?” and how I said, “Seriously? Right NOW?”
How after she was so damned incredible all night, I walked away, angry at her selfish need in the middle of it all for her Mama. How I stomped up the stairs, leaving her behind in a puddle of tears. How I hated myself in that moment.
I could tell you how I went back down and sat with her after all was said and done. How we cried together and how damned sorry I was. God, how sorry I was.
I could tell you how I found Brooke sobbing in her bed long after bedtime. How I pulled her close and brought her into my room. How she took my hands and pulled them across her chest, pushing them down. Looking desperately for pressure, heaviness, a place where the pain could end.
Or I could tell you how she finally – finally – calmed down again and I brought her back to bed, wondering all night, “Why?”
No matter where it ends, the story is the same. A family spinning its wheels – impotent, tired and overwhelmed.
Autism – one.
My family – none.
Thank God it’s a new day.
Ed Note: If you haven’t yet read (or commented on!) my letter to President Obama, I would be grateful if you would take just a brief moment to click over, read and, if you find yourself agreeing with the sentiment, leave a comment expressing your support. We need as many voices as we can get from this community. Thank you! —> Click Here <—