this life we’re living



{image is a photo of Brooke at the beach, jumping, her arms open as if to embrace the sea}

If I had my way I would be standing still. Listening to the ocean. Watching the waves.

But Brooke is no passive observer at the beach.

The beach, like life, is meant to be lived, not watched.

And live it she does.

Running, digging, squealing, scratching, cartwheeling, spinning, splashing, burrowing, kicking, clawing, looping, discovering, reaching, embracing, holding, swallowing whole.

We walk and talk, dragging our feet through the soft sand, making noises, leaving tracks, shifting the Earth, moving the wind, in some small, beautiful way changing everything we touch.

My thoughts race through time and space – to the news of the crisis at our borders, to the Middle East, to planes being shot out of the sky.

Children, children, children like mine. My heart aches.

“Come with me to the river!” Brooke yells as she skips over the sand toward the next tide pool. The wind finds her squeal and carries it to me.

Joy. Thick and heavy, light and free.

I follow.


{image is a photo of Brooke jumping into a tide pool, her arms in the air as if in flight}

Give me your tired, your poor, your huddled masses yearning to breathe free.*

This is what I know.

The news reports portray an Us that I don’t recognize gathering en masse to jeer at buses full of children sent North in desperation by parents who, like me, would do anything to give their children a chance at a life. Parents who, unlike me, had to make unthinkable choices to do it. Who believed the lies because they had to believe something.

And We turn away the buses, refusing Them help because these children aren’t ours, they aren’t Us, they aren’t our responsibility.

One was the wrong bus. That one carried kids on their way home from day camp at the local YMCA. Now it’s not okay. Because they’re ours, they’re Us. Not the ones who were tricked into believing in something that wasn’t real.

I can’t stop thinking about them. About us. I don’t know what the answer is. I just know this isn’t it.

The wretched refuse of your teeming shore. Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door.*

A small plane rumbles overhead. Instinctively, I look up. Brooke does not.

“Look!” I say, pointing up to the sky.

“I see a plane,” she says. We are in the same place where just two years before I had written:

we walk by a young couple and their two young toddlers. one playing in the sand at her mom’s feet, the other on his father’s lap. dad is pointing skyward and a chubby little arm is following suit. together, they trace a seagull’s flight.

something catches in my throat.

the little boy can be no more than two if he’s a day. and he’s watching so intently, mimicking his dad, oohing and ahhing as the gull dips into the sea, then rises again on a gust of wind.

the glory of joint attention.

i try to lock her out, but envy barges in with a question.

what might brooke and i have seen together when she was two? three?

four, five, six?

when was that first time? the blue house. days shy of her sixth birthday. “look, mom,” she’d said. a casual miracle.

the memory cements my feet to the ground. i don’t realize i’ve stopped moving (or that i’m staring) until my girl’s voice breaks into my thoughts.

The same place. A world away.

She sees the plane. I’m beginning to understand that she always did.

“There was Pulse It Puppy,” she says, “and Slow Down Snail. They are for slowing down.”

I’ve never heard this before. In a search of my catalogue of scripts, nothing.

“Where were those, honey?” I ask.

“In school,” she says.

“With Ms M?” I ask, thinking perhaps it was a tool used by her speech therapist in fifth grade.

“At my preschool in my class and there was Pulse It Puppy and Slow Down Snail and they are for sitting time and slowing down.”

The narration of a life .. a scrap of fabric here, another there .. threads, time … slowly emerges the quilt.

This is what I saw then, before the words, Mama. This is what I knew. I remember it all.

“Did you like my singing show when I was in kindergarten?” she asks. We’ve looped back to the comfort of familiarity. A script.

“I did,” I say. We play it out.

“I will go to my new school,” she says as we walk along a ridge, “and in my class there will be my friends who are austistic*** like me.”

“That’s right,” I say.

We process slowly, looping back, always looping back.




{image is a photo of Brooke running on the sand}

“Let’s pretend austistic means perfect!” she says.

“Okay,” I say, chuckling. “So you’ll be in the perfect class?” I ask.

“Yup,” she says. “Because I’m perfect.”

“You are,” I say, squeezing her shoulder. “Most perfect thing I’ve ever seen.”

“Is anyone REALLY perfect?” she asks.

A script. We loop.

I say my line.

“Nope, but you, my dear, you are perfectly imperfect.”

“And austistic,” she says.

“And autistic,” I say.

While we walk, Katie is diving into the frigid water, so cold I can barely stand it on my toes. But, like her sister, she is not content to watch. Ships are safe in harbor and all but that’s not what ships are for.**

She finds peace in the water, she says. “You can’t be anxious in the water, Mama,” she once said, “It’s impossible.”

She is in her happy place. Freezing, but happy.


{image is a photo of Katie in the water, taken by Luau. She looks as though she’s dancing.}

She will find a crab. She and Luau will take pictures of it, then send it back out to its home in the sea. “We couldn’t keep it too long,” she will say. “This isn’t where it needs to be.”

My calves are tiring from the walk. I ask Brooke if she’d like to sit for a moment. “Maybe later!” she says. “Come with me!”

I do.

“I’m so excited that Aunt Jess is going to have another baby!” I say as I catch up with her. “Are you?”

“I am too,” Brooke says. “What does inficial mean?”

When my nephew, Jude, was born, Brooke declared herself the Inficial Big Sister. She wouldn’t hear of being a cousin. Apparently that just wasn’t enough. So it was agreed. She is the inficial big sister.

“Hmm, like official,” I say. “Real, definitive.”

I’ve started using bigger words. Pointing to things. Talking about the world around us in different ways than I ever did before. It matters that she knew about Pulse It Puppy and Slow Down Snail long before she had the words to tell me. What does she know now that she will tell me then?

She steps on the dried shell of a horseshoe crab, relishing the crunch, stepping on it again, and then carrying on without investigation. I call her back to it. I tell her what it is. I explain that it died.

“I’ll bury him,” she says. I wait while she covers the crab in sand. Everything else we pass along the way that has died, she buries. There’s a respect in it. An appreciation of life. Wars and buses and planes sneak into my thoughts. Where do we lose that, I wonder.

“When Ooma dies I’ll miss her,” she says.

“Me too,” I say. “But I don’t think she’s going anywhere just yet, baby.” We had prepared the girls when we were sure we were going to lose my beautiful grandmother back in May. She’d made it clear to us that she was ready to go. Recently, it seems, she’s had a change of heart. “I changed my mind,” she told my dad. “I’m not ready to die yet.” I had told the girls as much. “Sounds like Ooma,” Katie had said, grinning.

I suggest that we go see her this weekend. “Okay,” Brooke says. Because I’ll miss her when she’s ready to go.”

She’s on her haunches now, sifting through the sand in search of crystals. The sun is warm on my back. I sit, watching her. I snap a picture, then close my eyes and turn my face to the sun.


{Image is a photo of Brooke sifting through the dried seaweed and sand in search of crystals, hardened chunks of sand that she can break with her fingers}

She covers her legs with sand, pressing hard with her palms as she drags it along her skin. I remember a graphic I made once: I never know what to say when people ask if Brooke is a sensory seeker or a sensory avoider because the answer is basically, “Yes.” The beach is her sensory playground.

I remember the EEG two days before. We’re at the hospital and the technician, Ms. Judy is measuring Brooke’s head for the placement of the electrodes, marking off the spots where the leads will go with a red wax pen that she calls her “silly crayon.” Brooke says, “Could you write it harder please?”

A light touch is discomfiting, disorienting, from what I can see from the outside, nearly painful, almost completely intolerable. She knew what she needed. She found words to ask for it. She got it. Years and years of years of work. She got it. It’s all I can do not to jump and kick my heels together in the tiny hospital room.

I realize that I’ve been absent-mindedly tracing an infinity symbol into the sand with my fingers. Brooke drags a fingernail across it.

“Do you see what I made, baby?” I ask. “It’s an infinity sign. Do you know what infinity means?” I wouldn’t have told her before. I wouldn’t have asked if she knew. I push further now. I trust that if it’s too much, we won’t lose each other in the trying. That’s no small thing.

“What does it mean?” she asks.

“It means forever,” I tell her. “See how it doesn’t end?” I trace the shape again to show her. She’s not watching, but I know better than to think that means she’s not taking it in. “This is how much I love you,” I say. “Infinity.”

“When  will we see Maya Angelou?” she asks.

I talked to Katie about Maya Angelou when she died. Did I say anything to Brooke? Had she even heard of her? Does she know who she was?

“We won’t, honey,” I say. “She died.”

“But when will we see her?” she asks.

I’m not sure what to say.

“Honey, she died about two months ago.”

“Did she go to special Heaven?” she asks.

“Hmm,” I say,” well, I think she went to the same Heaven as everyone else.”

“Ooma will see her,” she says, “when she’s ready for there.”


I …



{image is a photo of Brooke walking back for lunch}

It’s getting close to lunch. We begin the long walk back to the chairs and fall into a script.

“What did I ask about Winnie the Pooh?” she asks.

We loop back into comfort. Always, we loop.

“So what do you think Aunt Jess should name the baby?” I ask.

I tell her that Aunt Jess and Uncle Ryan like names that are different.

“Unique names,” she says, “like mine.”

The word I’ve used to explain why she can’t find her (real) name on anything personalized. “Your name is unique,” I say, “like you.” And here it is, back to me, so perfectly appropriate, our arrival here so .. unique.

I snap a photo of her walking along the edge of another tide pool. The sun is breaking through the clouds and the light is changing. Grey is giving way to vibrant blue, warm yellow, light beige, lush green, stark white. The beauty and richness of the scenery is overwhelming.

My fingers itch to type.

To capture the moment … the series of moments, the far away wars, the children at the borders, the faces of the passengers on the plane …

… and the words and the meanings and the self-advocacy and the memories and the looping and the moving forward and the crab back where it needed to be and the questions and Heaven and infinity and  family and love and trust and the sanctity of life and the respect for death and walking the same stretch of beach in a vastly different place and the longing and connecting and digging and scratching and clawing and squealing and embracing, and holding and swallowing whole this life we are not watching but living.

And my fingers itch to type.


{Image is a photo of Katie giving Brooke a piggy back ride on the way to the concession stand for lunch}

* From Emma Lazarus’s The New Colossus, engraved on a bronze plaque and mounted inside the lower level of the pedestal of the Statue of Liberty

** An homage to William G.T. Shedd’s famous quote, “A ship is safe in harbor, but that’s not what ships are for.”

 *** Not a typo


12 thoughts on “this life we’re living

  1. This post is utterly amazing to me. I can hardly believe how Brooke has grown and matured in a myriad of ways. She has always seen. She has always listened.

    Love you,

  2. I am in awe of your ability to both know and find the perfect words to draw out and teach your babies. They are so fortunate to have you and Luau there for them. You listen, really listen, to your girls and they to you. You draw out the feelings and the thoughts they each have about things both big and small and you honor those thoughts. Wow, talk about great parenting! You make your old dad so proud of you and the person you have become….

  3. Wow just wow!!! The amount of respect you have for your children well for all our children for all people is just well WOW!!! You truly are a wonderful mom and person whose heart has no limit whose desire to make a difference has no ends. The world is a better place because you are in it Jess and your beautiful girl is too!!! I hope your fingers keep itching and you keep sharing with us all your reflections, all the lessons your daughter is teaching you!!!

  4. Us and them drew me up short. Your writing is what is swirling in my head, planes and children and people in chaos. I am praying for peace, and wisdom. Thank you for reminding me that with the chaos in the big world, there are everyday miracles and progress in my little part of it.

  5. Please, God willing, teach me to understand the heart and language of children. This should be the prayer of all people fortunate enough to be in the presence of children and parents like yours and you. Thank you for your living example of perfectly imperfect.

  6. All the posts you’ve written, all the things you’ve ever said… they do all kind of loop back to this. The love, the respect, the aching for all of our children (because those precious children on those buses belong to all of us, no matter where they came from…). This is beautiful…just so beautiful, and so important. Thank you for sharing it. xoxo

    • Ha! That makes sense!!! And it might well have been me misinterpreting her rather than her mispronouncing it. I asked her to repeat it twice and wrote my best approximation of her pronunciation. But yup, she took it all in. 🙂

  7. Wonderfully written. I am so happy at how Brooke is progressing. I do not often comment on people’s blogs, but I felt like I had to. Thank you for posting. 😃

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