our roller coaster


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Katie’s concert would be starting soon. Brooke and I found seats in the auditorium while Luau manned the PTO’s pizza sale in the lobby.

Brooke passed the time making a list of names on the iPad. We have thousands of them; the lists. They’re everywhere — soothing, calming, orderly.

We were early enough that the auditorium was still relatively empty. All was well.

And then something happened. Something small that wasn’t small at all.

It was this.

Screen shot 2012-12-05 at 5.43.49 AM

This is what that says …

Hole Lee crap on toast, people – ready for THIS? I just noticed that the strings on Brooke’s hoody were tucked inside it. Assuming they’d landed there by mistake, I reached in and pulled them out for her. And when I did, she said … *drum roll please* .. “Wait!!! I like them in there.” And then, as she tucked them back in, she added, “Please don’t do that again.” And then, right before I fainted, I told her how completely awesome she is. #SeedsOfSelf-Advocacy

Click.

Click.

Click.

The roller coaster edged higher and higher.

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The concert began. Brooke watched intently. She waved to her sister. She said, “Hi, Katie!” She hoisted herself up in the seat, leaning over me to get a better view.
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Katie winked at me from the stage as the accompanist began the introduction to my favorite song, then beamed as she sang. “Amazing Grace, how sweet the sound .. “
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Click.
.
Click.
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Click.
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The view was breathtaking.
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And then Brooke began to struggle. God bless the kids, but one off-key .. just one .. and my girl hears nails on a chalk board.
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This was too much to process, to manage, to hold together. The room full of people, the singing, the movement, the coughing, the shushing, the sniffle, the cleared throat, the toddler off in the distance. It was too much. Too, too much.
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She tried to stand up, to leave, to run.
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“Not in the middle of a song, Brooke,” I whispered. “It’s almost over.”
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“I need to be all done NOW,” she said.
.
Too much.
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The overwhelm was setting in. She felt trapped. Words were failing.
.
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She lifted her little hand and brought it down hard on my forearm. I winced at the sting of the blow. “No, baby,” I whispered. “We never hit. I know you’re frustrated, but we never, ever hit.”
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Later, I would write to a couple of close friends.
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So, you know when your kid hits you and you’re kinda like, whatever, cause yeah, ya know. But then someone says, Did she just HIT YOU? and then suddenly it’s different and bad and really, really not okay? That.
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I wouldn’t tell them right off that the someone was Luau. I wouldn’t tell them about the look on his face when he said it or how he brought the moment into such stark relief with those five little words, “Did she just HIT YOU?” I wouldn’t tell them that I still felt the sting of the blow on my arm as I typed, but that that wasn’t where it hurt the most.
.
~
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Later that night, I would begin to write. I would start, as I so often do, in the middle. I’d write in the present tense, wanting, perhaps, not just to remember the moment, but to put myself back into it. The moment when I’d been able to Do Something. The moment when I could Make It Better.
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~
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We’re trying to find Katie after the show. The hallway is full and crowded. The walls are closing in.
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“THERE’S TOO MANY PEOPLE!” she shrieks.
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She looks to me to Do Something. To Make It Better.
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I look around, searching. The traffic has bottlenecked right where we are. There’s no easy escape route.
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I crouch down to her. People have to spread out just a little bit to accommodate my hunched form. I’ve created a little bubble of space around us.
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I put my cheek on hers.
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I can’t see her smile, but I can feel it.
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“Do the Rollers!” she says.
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And we do.
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The Rollers — or the Roars — I’m not really sure which — came from Tigger. Tigger says Roller. Which is sort of like Roar. But different. And now, they are a thing. Brooke smushes her cheek onto mine and we say Roller. Or Roar. Or something in between. It’s not something that’s meant to be spelled. It’s smaller — and bigger — than words.
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And as we Roll or Roar or whatever it is that we do, something magical happens.
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The crowd falls away.
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They’re still there of course, but we’re okay. She’s okay. We’ve created an island of comfort in a sea of chaos. .
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She knows she is safe.
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And in the moment — in THIS moment — nothing else matters.
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~
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Yes, this life is a roller coaster.
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A big, scary, exhilarating, exhausting, beautiful roller coaster.
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And it looks something like this …
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~
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23 thoughts on “our roller coaster

  1. Thank you. I will be seeing that final image in my head for the next few weeks. My boy’s school made a part for him in the Christmas concert. It means a lot to me, as I have gotten emotional before, not seeing him up there. But I am already so worried about how he will handle it. Now I will take a deep breath and think of that heart shaped roller coaster if going gets rough!

  2. Jess, you are so open and caring, I feel like I can ask you this question and you might, just perhaps, feel like you can answer me… How do you handle living on an edge each moment? I read your blog, and get inspiration and comfort knowing ‘others’ do get through their days too; often still smiling. But today while reading your post, the question burned in my head… how does she handle this constant, on-alert, atmosphere in her life? (Does this question make sense?) My oldest son has Down syndrome, but is not my source of waiting for the time-bomb of emotion to overload… that’s my second son. He has many anxiety issues, and sensory processing issues, and it makes daily life often tenuous – at best. How do you process the mental energy that constantly flows through your brain, trying to be ‘ready’ for whatever might spring up? Trying to avoid even tick-tick-ticking up the ‘up’ side of the roller coaster, trying to be preemptive before you hit the dreaded over-the-top decline, is beyond exhaustive most days. If you feel you can, could you share any insights on that??

  3. Ah, I am well acquainted with the roller coaster, as many of us are. I’ve been waiting for a steep drop for a while now. At this point, I’m cautiously optimistic that maybe the next drop won’t be quite as steep.

    Anyway, your mention of Brooke’s lists jumped out at me. E is a list maker, too. In fact I just came across a huge stack of them in his desk drawer. They used to be mostly rote lists of city streets and train stops. Now they involve favorite sports teams and players, cities he wants to visit, colleges he’d like to attend, all painstakingly written in pencil. Such an interesting, tangible glimpse into their unique and precious minds!

  4. Thank you for sharing this – sounds and feels inadequate to say this but you know where it’s coming from. {hugs}

  5. My 10 yr old Aspie has her school Christmas concert this week and this is the first year she will be playing in beginner band…and then the following week she has a small part in a play….eeeekkk!!!! She’s nervous but we have been working on being brave and understanding that people are laughing at the funny parts in the play, not at her…..lord, give us strength! 🙂
    Thank you for lifting us up with your stories, thank you for sharing your life, and thank you for this community…it means more to me than a lot of things right now….because all of you ‘get’ it, and that means everything. ❤

  6. I felt like I wrote this from “our” yesterday! It’s this tiny understanding we have with our child, that moment of “this is what we do we feel like this”. That wonderful smoosh of cheeks when it all falls away and becomes ok.. So well known. So nice to see someone else reflect that 🙂

  7. As always.. you put so elegantly into words how life is for us. One huge roller coaster.. more so lately. Sometimes, they are the little fun bumps (not to high, not to low.. just kinda right).. but sometimes, like you experienced the other day, they are the big highs and extreme lows. You just want them to be happy again.. it’s all I want.. for him to be happy because when he is, it lights up my world like a huge sun. Makes me smile, makes me feel warm inside.

  8. “So, you know when your kid hits you and you’re kinda like, whatever, cause yeah, ya know. But then someone says, Did she just HIT YOU? and then suddenly it’s different and bad and really, really not okay? That.”

    I so get this.

  9. I just came back to this post to re-read the bit about Brooke hitting you. Thank you for sharing this. I’ve just today been ‘told off’ by our ABA consultant for letting my son get away with too much. For so long he couldn’t communicate, and now that he can, and does, I’m just so happy and grateful and excited that I hang on his every word. It’s a genuine pleasure for me to talk with him on any level and I’m so afraid too that he will stop doing it unless I always give him my full attention. It’s hard to remember sometimes that shouting and constantly badgering isn’t appropriate – it still seems to me to be a miracle! Thank you for reminding me (again) that the unexpected parenting path I’m taking isn’t one I’m treading alone. X

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