All We Want to Do is Ride

On my birthday I feel like myself.

I listen to Fairytale of New York

and The Band Played Waltzing Matilda

I wonder when I too will get back home.

And the Christmas tree smells good.

My recurring dream comes back

I’m up at the top of a slide

where there’s a window where you pay entrance

and you get an orange boogie board for your son,

so he can surf it down

but we forget to order the board at the window

and then we’re down at the bottom

no one has ridden

and I’m pleading with the teen behind another window

I need a board so my kid can ride down

and there are surfers and golden retrievers and a big flat pool

it’s all complicated and all we want to do is ride.

On my birthday every year

I long for journaling

I remember my roots in railroad moon-in-the-desert Kerouac.

Remember at the New York Public Library

when you first got sober

there was a black and white of him in the stacks

the size of an album cover?

Gorgeous handsome Jack of the 1940s

I wanted to steal that picture for inspiration

but I left it there so another could see it too.

On my birthday

I always make a wish —

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Stage Lights

Jack’s upstairs practicing the workers’ song from Frozen, track 1, “Frozen Heart.”

His babysitter is sitting next to him on the couch egging him on in all the positive ways, singing with him, clapping, shouting out the “Ho! Watch your step! Let it go!” chants as he masters it.

Next Saturday, he gets to do this on stage for a fun Camp Willow night where they invite kids to get on stage to do a song or scene of their choice. I thought he’d pick Moana…but he picked this. The gal from Camp Willow emailed asking what music we need, what type of background and even what kind of lighting. Jack said, Snowflakes and rainbow colors.

Why not? So I emailed his request to her. It’s original, you gotta give him that. We’ll see how it goes.

When we take him to shows, he always asks, Is it my turn? It’s hard to explain all the reasons why I can’t just let him wander up onstage at the 5th Avenue Theater or McCaw Hall.

When we take him to shows, he always asks, Is it my turn? It’s hard to explain all the reasons why I can’t just let him wander up onstage at the 5th Avenue Theater or McCaw Hall.

I hope at those times I’ve been gentle with my answer. I’m sure I don’t always get it right. But I know I’ve said, Well, hon, the stage is for the actors. They’ve practiced this a lot and now it’s their turn to be up there. If you want to be an actor, we can look into lessons.

I know last August during the week of Epilepsy Foundation camp, they had a dance party one night. I got a video clip of it. There was Jack, the first to get up on a makeshift stage and dance, while the others ran around the floor in a big circle (which I’m sure was the plan). A grown-up tried to get him to join the circle, but no. Stage was the place for Jack, in his white tee shirt, orange plaid shorts, long legs and sneakers, doing all sorts of moves in purple light — jumping up arms outstretched on the Whoo!, twirling his hands, spinning around, running in place really fast and then his crowning move, making muscles with both arms.

I like the part when he wipes the sweat from his brow and keeps on dancing.

Eventually five other kids join him. Because who really doesn’t want to dance on stage? It’s better up there. Jack knows this.

It’s all so beautiful to me, watching this kid grow up, seeing his creativity shine. Thing is, the seizures have done a number on us but as long as those who love him keep smoothing out the way to just let him be who he is and keep giving him calm direction along the way, then we’ve done well by him. He deserves to live his truth and thrive just like any other kid on the planet. I’m here to see that through.

It’s all so beautiful to me, watching this kid grow up, seeing his creativity shine. Thing is, the seizures have done a number on us but as long as those who love him keep smoothing out the way to just let him be who he is and keep giving him calm direction along the way, then we’ve done well by him. He deserves to live his truth and thrive just like any other kid on the planet. I’m here to see that through.

No Ordinary Hook

Jack is a two-pronged trick-or-treating strategist.

He has two plastic candy holders. The first one is the standard, round pumpkin with the looped black handle. Ours is purple. He calls this one Beginner.

The second one is orange, bucket-shaped, pumpkin-faced. He calls this one Advanced.

That’s because last year he and his dad spent a lot of time trick-or-treating and they actually filled the first one, came home, swapped it out for the second and pretty much filled that too. Yes, it was way too much candy and he did NOT eat it all.

Jack is big into Halloween. As soon as Back to School wears off, he turns on the imagination for Halloween. What should I be? The kid believes.

We have to make sure the costume isn’t too hot because one year in a black cat outfit, he got overheated and had a seizure down the block at the neighbor’s fence. I remember the spot he stopped in, staring into space, lifting his arm slightly and falling into bamboo.

A little while after that, a mom I like brought her kids by our house to trick-or-treat. She asked Where’s Jack? I didn’t want to say, so I just said He’s in for the night, nodding my head in a strained kind of way.

This year, with the seizures HOPEFULLY in our rear view, Jack is Maui, the demigod from Moana. You know, it’s Dwayne The Rock Johnson and his big song is You’re Welcome.

Maui carries a magical fish hook. It’s his attribute. We got one on Amazon, along with a Maui costume which is just a pair of pajamas, but that doesn’t bother Jack. On Halloween night we’ll layer up underneath so he’s not cold.

Maui carries a magical fish hook. It’s his attribute. We got one on Amazon, along with a Maui costume which is just a pair of pajamas, but that doesn’t bother Jack. On Halloween night we’ll layer up underneath so he’s not cold.

In character, Jack screws his face up and half smiles like he’s all strong and powerful, crooks his arm and makes a muscle. He knows where the strength is and he’s learning how to tap it.

Today, we headed out to Fred Meyer for a few things. He asked, Would it be ok if I bring my hook? I said sure.

Now, this is no ordinary hook. It evokes whalebone covered in brown scrimshaw tattoos. The handle is brown too, meant to look like twine wound tight for a good grip. Of course it’s all plastic, but what do you expect?

Oh and that’s not all! This is a light-up hook with a few sound effects thrown in — sssshhhhhuuu, sssshhhhhuuu. Jack’s been dressed up in the p.j.s acting out all the scenes from Moana in the house. He’s got all the moves to You’re Welcome, the dipping, the clapping, the twisting and crouching. His imagination just takes hold and you can see it illuminated right behind his eyes. It’s his power, just another kind.

Even though he’s a teen now and I’d really like him to be trick-or-treating with a group of neighborhood or school kids, his friends are limited and it’s usually just Jack and I trick-or-treating, or Jack and Dad going out. This year we’ll meet up with one friend and his little brother for a while, boys we’ve known since kindergarten.

Anyway, when we’re ready to leave for Fred Meyer, Jack appears, not only with his hook but in his Maui costume too. Full on. I smile. We get to the store, and in he goes ahead of me. I enter and I see the people waiting in line at the register. They stare and wonder why he walks that way.

To themselves, they ask What’s wrong with him? Face it, we all still say that. Even though it comes from a place of superiority and judgement, not understanding and grace. We’re just not that evolved yet. People need the label, it helps them. But there’s so many bad words on that label and I can’t live in the reminder. I need to exist in the possibility of what he can become.

To themselves, they ask What’s wrong with him? Face it, we all still say that. Even though it comes from a place of superiority and judgement, not understanding and grace. We’re just not that evolved yet. People need the label, it helps them. But there’s so many bad words on that label and I can’t live in the reminder. I need to exist in the possibility of what he can become.

So this is what I say to Jack: Walk right on in. With your hook. In your costume. With your walk. With your voice.

And that’s what we do. It’s so easy for me to believe in this kid. I’ve seen him struggle and I know what the seizures did to his brain. I believe with all my heart, especially because the stragglers at the register never will. I have to believe in him even more due to that.

So when we’re driving down Sand Point Way, heading home from our trip to Fred and the story he’s telling me comes to a nonlinear conclusion, I say Yeah! and I smile and nod my head with gusto. I know I’m acting a little myself now, but I’m here to build him up. Always. He’s strong — with or without the hook — and he knows it.

Lesson

Everyone knows this about me but while surreal headlines hammer on about the Las Vegas shooter, the enormous power of the NRA, the voracious sexual appetite of a now-done Hollywood boss, cruelty in football and some senator calling the White House an adult day care center…you know what I’m doing?

Walking the dog. Down by the water. Always, seeking the water, under open sky.

wetlands 2017 3

Nature makes sense to me. Running around the woods in Stony Brook with our ragtag gang when I was small, building forts and playing war in bamboo and mud meant that the place I know best is trees, dirt and sky. And the water. And the creek was my first water.

The creek off Erland Road — past the cut-through at the bottom of a rutted, sandy path meandering through pricker bushes and pokeweed — where I got carried away in the current in 1966.

My mom couldn’t swim. She sat on a blanket in her blue daisy suit and floppy white hat, talking to our neighbor who lay on a towel. Out in the water, my feet left the sand. My legs pedaled in deep water and I got pulled around the corner, first slow then fast into the main current. I was 5 and the only one in that day.

I remember the current pulling me down between narrow banks where grass grew. My head stayed above water. It was almost like being carried off on a cloud. There was symmetry there. I wasn’t afraid and didn’t think of drowning.

My mom must have, though. She must’ve stopped her chitchat to look out and see me suddenly being pulled away. She panicked. Our neighbor, just a teenage girl, ran down the bank and jumped in to rescue me.

I really didn’t know what the fuss was about. The creek had held me in the palm of its hand. The pull of the current was just nature teaching me a lesson.

Shadow and slant light balanced on leaves across the woods, the bead of the dogwood, the current pulling east off West Meadow Beach, these were my first and essential lessons. The ones I return to. To me there’s both chaos and order beneath the bramble, thorn and sand, in the smashed berry streaked purple across your arm. I’m just in it and it carries me.

berrries

 

 

 

 

Knockin’ on What?

So the Early Girls, in the pic, are abundant in our garden now, and today was Tomato Sauce day in the kitchen. I kept it pretty simple, olive oil, shallots, basil and tomatoes. Will be nice to freeze some and pull out a jar in midwinter and remember all that summer sun and warmth that grew these humble little fruits…or is it a vegetable?!

tomatoes 2017
Oh, and beans. Anyone want some beans?!

I book-ended my summer with Memorial Day & Labor Day weekends up in the Skagit. I love it up there, the farmland and the mountains and the little main street are really a perfect antidote to this city living, with jobs and day schedules and traffic. When I go up there, I just really turn it down, and it’s so needed.

On Saturday night I was walking the dog on the channel walkway. The walkway is parallel to Main Street. The water’s to your right and all the restaurants and bars are to your left and you can spy all the pretty people sitting under tiny string lights inside Nell Thorn, the best table in town.

Keep walking and you hear the clinking of bottles and glasses with the low chatter and laughter from the bars. My dog trots alongside me and his tags clink too. It’s the only sound we make.

Keep walking and you hear the clinking of bottles and glasses with the low chatter and laughter from the bars. My dog trots alongside me and his tags clink too. It’s the only sound we make.

I hear some live music up ahead and come upon one of the bar’s outdoor patios. All the tables are filled and seem a bit crowded together, especially with the expanse of water to my right. A guy with gray hair sits at a keyboard singing Knockin’ on Heaven’s Door. Beside him stands a fiddler in a long flowered dress. Her bow takes long draws, points and dips during lyric breaks. The tempo’s slow, and you get the feeling this song’s been going a long time. The mood is a little somber. It’s the last weekend of summer.

Ahead on the walkway, a couple leans against a railing, embracing, and everyone is caught up in the song. My dog and I wheel around the couple and keep going. We get to the end of Main Street where the only thing to do is turn around. I think to myself, I bet when I walk back, the same song’s gonna be on.

So we come back upon the same scene, and yes indeed, the guy is still singing about knocking on that good door. I’m glad I’m just walkin’ the dog because everyone in the place seems hunched over, glued to the singer and contemplating their own profound downfall. Not yet. Not for me. Or my dog. So we just spring right on by.

Knockin’ on Heaven’s Door just isn’t the song to sum up my summer. If it was Dylan, it’d have to be Idiot Wind, an all-time essential song for me. If it was Neil, it’d have to be Long May You Run.

Knockin’ on Heaven’s Door just isn’t the song to sum up my summer. If it was Dylan, it’d have to be Idiot Wind, an all-time essential song for me. If it was Neil, it’d have to be Long May You Run.

So, turning the page from summer, I’m happy to report I completed the two applications I set out to, one for a writer’s residency at Hedgebrook (99% doubtful for almost everyone who applies) and one more local artists’ grant. We’ll see. I’m really psyched I’ve applied as I need the next step to spur me on, on my writing journey. And what’s the soundtrack for that?

That’s easy.

She was an American girl/Raised on promises.

Public Spaces

I am so jazzed about Outdoors for All.

They’re a nonprofit that celebrates people with disabilities and gets kids out on bikes, kayaks, swimming, rock climbing, and in winter, on skis, snowshoes, you name it.

Yesterday, they held an Adaptive Bike Day at the park where kids with disabilities were invited to ride 3-wheeled bikes. Seeing those kids looping around the park on bikes made me realize Outdoors for All says to kids, clearly and boldly: YES YOU CAN.

It’s just so cool because a lot of places still say NO YOU CAN’T to people with disabilities. We’re still fighting for our rights in public spaces, like school, for one…

And what did you do today, Ms. Sweeney?
Oh! I’m glad you asked! I spent half of it composing a letter to our school principal & Special Education teacher with a cc to the school psychologist, outlining ways in which the Special Ed students can be more involved in the full life of school, and not so isolated, in their separate classroom with their separate activities.

You spent half the day writing a letter?
Well, words count, and I have to put things just so for the principal & our teacher, who I happen to like. For instance, even though school isn’t doing enough to integrate the children, you have to position it like they’re making a good effort. You can’t start on the attack.

You have to tell the story of the bike day above, and say things like “I’m sure we agree that school is also a place that should say to him: YES YOU CAN,” when in truth you could rattle off 5 ways they muffed it up last year. You have to ask so nicely if they’re considering Unified Drama, and point out that the high school runs it, when inside you’re screaming “Why don’t you have this yet? Why were there ZERO kids from Special Ed in the school play last spring?!?”

You have to tell the story of the bike day above, and say things like “I’m sure we agree that school is also a place that should say to him: YES YOU CAN,” when in truth you could rattle off 5 ways they muffed it up last year. You have to ask so nicely if they’re considering Unified Drama, and point out that the high school runs it, when inside you’re screaming “Why don’t you have this yet? Why were there ZERO kids from Special Ed in the school play last spring?!?”

Unified Drama?
A Unified activity is one that blends all kids and is a great friendship builder. It grows out of Special Olympics — Unified Sports.

I’m just making the point that as parents, we have to spend more time trying to set up activities that celebrate and include our kids — and then we have to monitor them to make sure they succeed. The General Ed parents don’t have to take the time to do this.

This may sound harsh, but unless you too, are busy filing appeals to the health insurance company or asking the Disability Administration for money, filling out forms, checking wait-lists to see if you can get the therapy yet, going to talks at hospitals and begging school for better services, you really don’t know what raising a kid with a solid disability is like.

That sounds like a lot. Well then, with the 30 seconds we have left, any closing thoughts, Ms. Sweeney?

Take a tip from Outdoors for All. They get it, and they get your kid. You don’t have to start from scratch, explaining, with them. I’m super grateful they’re in our city. For the kids that don’t have supports like this yet, I want to say YES YOU CAN. YES YOU CAN be accepted in society with your disability. YOU ARE NOT BROKEN AND YOU COUNT. In fact, you are the one that changes minds when the others see how hard you try and how your loving heart guides you in a world that still shuns your gifts. I say yes to you.

Take a tip from Outdoors for All. They get it, and they get your kid. You don’t have to start from scratch, explaining, with them. I’m super grateful they’re in our city. For the kids that don’t have supports like this yet, I want to say YES YOU CAN. YES YOU CAN be accepted in society with your disability. YOU ARE NOT BROKEN AND YOU COUNT. In fact, you are the one that changes minds when the others see how hard you try and how your loving heart guides you in a world that still shuns your gifts. I say yes to you.

4th of July Weekend Checklist

We have a 4-day weekend!!

  • Blast Sandinista while walking the dog on the Burke…smile at many people, get smiles in return…Somebody Got Murdered all right…Chicago, North Carolina, Seattle…Lightnin’ Strikes Old New York & all that
  • Exercise for at least 1 hour each day
  • Talk to Dad
  • Facetime with J
  • Start Hedgebrook application
  • Drive to the Skagit, see Ma, swim in Shelter Bay pool
  • Jack’s swim lesson, Jack to the driving range
  • Sparklers in the backyard
  • Grilled salmon & blackberry pie
  • Rent a pedal boat on Greenlake (goofy but SO worth it)
  • Finish reading Trumpet of the Swan to Jack
  • Own it own it own it