Part 1: Going to Portland

w/article voiceover

This is the first of a multi-part series. I’m exploring the benefit of reading these posts in addition to writing them, partly because this piece is long, 20 minutes, so it may be easier to put it on like you’d do a podcast, and partly because I’m considering this new way of finishing my work here, finishing what has turned out to be a search for the context I want to use to tell Stella’s story, the story of her death.

When she was first diagnosed as terminal I started looking for stories of death, written by parents; specifically, direct logs of what happened. I couldn’t find any. So I started writing.

Below is part 1, chronologically the end.

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Press play or read, or both. (NOTE: there’s a word from Stella at the bottom of this page)

February 20th 2020,

a journal entry (edited)

I woke at 5:00am and looked over at Amy on the bed, sleeping with Stella. I was in my usual spot, on her bean bag by the window. I stood and walked over to where they both slept, Amy temporarily, Stella forever. It was 48 hours ago I watched her take her last breath right here in this very spot, in her bedroom, one floor above the one where she was born. She was 14 1/2 years old.

I left quietly and went downstairs; it was time to usher Justin to the airport. I love my brother … and my sister, I’m lucky that way. I wish my sister had been around more during this time of the impossible goodbye. I understood why she couldn’t be. By now, she was back in Hawaii running her large world of work, and caring for her 3 younger children Ava, JiaJia and Victor. Justin had been around for the past few days, back again after Stella’s quick turn toward death; but is was time for him to return to his family and life as well. My mother was leaving too. My father and Stella’s closest cousin Ava had left days before. Amy’s sister Maire had as well.

It doesn’t seem right, that anyone should have anything else to do ever again that is more important than being here, now.

Mom, Justin and I gathered in the kitchen and had a cup of coffee and chatted about … logistics most likely, I can’t remember. No one else was in the house yet. We were ghosts as we stood in the room together and and we were also weirdly unfazed, normal; our voices and faces were the same and life had to go forward but we were covered in a veil. We finished our coffee and did the dishes and mom hugged her eldest and cried of course and then Justin and I left in my truck for the airport. It was a frosty, clear morning, again. The world was still there, I remember thinking as we pulled out of the drive; I could see it, there it was, the familiar houses and cars in my neighborhood, it looked normal but ridiculous, it didn’t mean anything. The drive down to the airport was occupied with conversations of gratitude for our great friends and halting pauses, while we wondered what to say about going forward; it was easy though, its always easy talking with my siblings.

When I got back Mom was already packed for her flight; her tidy carry on was sitting in the living room with a coat slung over it, her purse nearby; the clothes she wore were clean and subtly, ambiguously, business-like, as always … no one could profile this woman, former Waldorf teacher? not … so short and tidy, little Nona, Francesca Cappuccitti her name before marriage, caregiver to all, always doing. We came up with a phrase during these last two weeks in the house, our friends: to been Fran-ed. This meant you put your glass or plate down on a table and when you turned back it was gone, maybe before you were finished. ‘I’ve been Franed’, we would shout. Then my mom would hear that, and do her, shucks cluck and apologize haltingly and smile and shake her head.

She’d let the chickens out already, loud things. She’d also moved the cars to make way for Kaleo’s van/hearse to pull back into the driveway. 

When Kaleo and Josh arrived and started talking strategies of moving Stella … moving what was Stella, what still is Stella from the bed upstairs, to the window seat and then to the van, I went upstairs to check on Amy. I could relax; they would check on the how, what materials needed, where the dry ice. When I walked into Stella’s room I saw Amy in bed with her, her body, not her but her. Stella’s body was covered in lavender, most of the lavender available in all of Seattle according my friend Maura, the florist who’d procured it for me the day before. She was there wrapped in her favorite blankets. She was dressed in her favorite clothes. She’s still Stella. She’s a still Stella. Ice queen.  So pretty. Always so pretty. Her face more and more looking like an older version of her not for wrinkles – her skin was smooth as silk – but because she was less fleshy. The cancer was dead now along with her and all of the life was sinking; her cheek bones were pronounced, her nose thinner. Gorgeous in such a strange way. Bluish. Cold. Stella but not Stella. Stella Blue Summer Altwies.

Charlotte was asleep in our bedroom and would not be waking for several hours.  She asked not to do this part with us.

It was a quiet day outside.

Kaleo and Josh were downstairs murmuring through the plan; then Joel, Billie, Makaela, Selah, and Kathy, arrived, and our transporter Emily and began their plans for the departure of their subject.

Kaleo and Josh came upstairs. It was time to make the move.

Two days ago, we’d first added dry ice under her body, talked about and then executed this carefully. The first time we discussed the need to keep her body cool out back in my workshop, Kaleo had brought a cooler. I remember looking down at the cooler and thinking, ‘this holds ice to cool beer, not my daughter’s lifeless body’. We’d known before she died we’d need to do this and, because I was unable to leave the house, these two made the arrangements. We’d changed it a few times already when the ice had melted; the further away from Feb 18th we went, the longer the ice lasted. Now it was time for my two old friends and I to carry her out of her bedroom one last time, downstairs to place her on her other favorite seat in the house; the window seat in the living room. The window seat built by Keith Van Dyke and I back in 1998. She loved this place almost as much as Charlotte did … they may have each spent more time on this bench than any other place save their beds; Wilson Milam slept there, all 6’ 5”of him; Jessica shaped and stitched the futon and made the cover that lay there; the sun shown on this seat most of the day (when sunny outside), you could see the front yard and the street and the porch and hear most things happening in the house from there.  

With her head to the south, her arms crossed over her chest, her fresh clothes neat and clean, we changed the dry ice one last time. I tipped her body slightly, stiff and unnatural, toward the window and pulled the melted dry ice in the zip lock bag out from under her and handed it to Kaleo. The ice was mostly melted. Kaleo handed me a new one and I put the new one between her and the yoga mat she lay on … three times: one up by her shoulders and two at the hips. We only needed to cool her trunk; she was small, so three bags, reaching from her tail bone to her neck along her spine was plenty; we used rolled up towels on each side running shoulder blade to butt to create a channel between which the dry ice sat. The bags pressed against her spine keeping her cool.

While the three of us next talked about how to carry her out and how to secure the cot in the van and how to strap her down … this precious cargo, Makaela, Joel, Selah and Billie sprinkled rose petals from the front door landing at the porch, down the steps, along the concrete path and to the van backed all the way up the drive. Kelly next door watched from her window. Mom, Kathy and Amy came and went. 

The flowers on the apricot tree in the front yard were budding those beautiful, white and pink flowers and the crocuses were in bloom but the forsythia right outside the window wasn’t even greening yet. Spring was coming.

I looked down and my friends and I were rolling Stella onto a new yoga mat that acted as our stretcher.

Then we were carrying her out the front door as our friends stood by and watched; they were spread out … one on the porch, one in the front yard near the steps one by the Kings table. Perfect ceremony for us, for her; utterly pedestrian and full of all the ceremony you could pack into any one heart.

We took the rose pedal path to the driveway and placed her on the cot in the van. We secured her body.

That was her funeral procession. Nothing else will ever come close to being so grand in my lifetime.

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Stella, by no cause hereditary or environmental, by no abuse of drugs or diet or for no other possible reason that we on earth can see, received the worst case cancer strain and died within one year of her diagnosis; three weeks before she died she was at school, BACK at school for good, with her friends, having just completed 9 months of radiation and chemo and having resolved her cancer. 

-she didn’t even get a year from her April 13th diagnosis. 

-she never took her ever-present feeding tube out for more than a few days

-she was embarrassed to go outside during most of this time due to her disfiguration; this is a 14-year-old girl who’s just starting to care about what she looks like

-she got her first and only menstruation when her weight was high enough in late December, right before she was diagnosed as terminal but right after we thought she was looking free and clear

-she went blind at the end

-she was bleeding out of her eyes at the end

-tumor was coming out of her eyes at the end

-tumor was growing into her nasal passage at the end

-she started losing her mind at the end, only briefly but enough to be the next worst thing to witness

-she was in pain at the end

-she was sad at the end

and

-she knew we loved her at the end 

-she was in her own bed at the end

-she never seemed afraid at the end

-she took care of her friends and classmates at the end

-she had her sister at the end

-she had her parents at the end

-she knew her entire community loved her at the end

-our community was galvanized by that love for her and I believe she could feel that at the end

-she had Spunky on her bed

-she knew we loved her

-she knew we loved her

Stella Blue on a cruise ship with grandma Ruth Thone

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The drive down to Portland:

Amy sat in the back seat with Stella’s head near her. I was in the front with Emily. Emily: a living spirit of infinite creativity who bonded with Stella and then, when she was sick became her living daemon. An adult kindred, egoless, ever-ready and somehow both all heart and emotionless.

It was a pretty day and we had Kaleo and Kathy behind us in Emily's car for company.  We stopped two times to go to the bathroom and to get gas. At one of the stops I wandered into a GNC store where a very fit and aggressive person asked me how my day was. 

I paused because I didn’t expect the question, I was in a stupor, I didn’t even know why I was in the store.

‘I’m on a short trip down to Portland’, I said.

‘Oh, you going down for fun’? She asked this loudly and with a huge smile. There was only one answer to the question and this answer wasn’t in my quiver.

I paused again, still a shell of myself, like I’d been all day, this impossible day. Then I said, not angrily but not with tact: ‘I’m actually transporting the body of my recently deceased 14 year old daughter from Seattle to an Aquamation center down there’.

Blank stare. I watched her reaction closely, enjoying it. I meant to hurt her … I knew she wasn’t prepared for that answer. She was embarrassed and stunned. I didn’t wait long for her to recover.

I left. 

It wasn’t very nice…I didn’t offer anything else. But, ‘How are you’? Really? Do you really want to know how I am, or are you just moving your mouth and making sound to avoid silence?  Yeah, it wasn’t fair … it wasn’t her fault but it felt good dropping a bomb on the airy, blah, non-question and walking out; it was a tiny take on a giant day of loss and I needed it. And it wasn’t fair.

That’s not me, I kept saying; I won’t apologize, I kept thinking.

The Aquamation station was interesting.  It was at the end of a dead-end street. I said Georgetown-esque because inside it looked like a biker’s garage: tall ceilings and open space, lots of motorcycles, hearses, international flags hanging from the trusses?, It was a huge room. Handsome young people dressed in business attire bustled about; but attire for sad people, just so, sharp, odd but appropriate black slacks and coats but over shirts with no ties, just right. Yes, I noticed that. They were skillful at helping us, it was an alternative activity, a job that, when they were drinking with friends, they could talk about and not be boring. They were sharper than most kids, with eyes used to life’s big moments. I don’t know why I focus so much on those kids.

When I first walked into the waiting room, separate from the main space but with windows to see what was happening beyond, I saw two young women quickly wheeling two gurneys away. They were weighed down with human bodies and when I glanced in the direction they were headed I saw a steel box of a room (the cooler) maybe the prep rooms that housed the used space suits until it was time for the deed. These kids were cleaning up before we entered the space.

We did some quick paper work. “You can back the van in now if you’d like”.

We backed Kaleos blue, Dodge caravan into the large space and opened the trunk door. The kids joined us and looked in to see her body wrapped in blankets, strewn with lavender, dressed in clothes picked out by Charlotte and Lili. I wondered what they thought. I wondered why I cared what they thought.

What they saw, what we saw, was Stella, on the cot Kaleo supplied, tied down with painters’ canvas that I’d ripped into strips back at the house. Amy didn’t want her strapped down with ratchet straps, for fear of offending Stella with the reminder of the ambulance rides that we’d taken from the hospital to the UW radiation center in early Feb. I didn’t want her body lying on the freeway or smashed in the back corner of the van if we got into an accident or had to stop quickly. We’d compromised; so I’d ripped up a canvas drop cloth and used the more appropriate material to strap her tight and she didn’t fly out of the van when we didn’t crash on our trip down.

They talked with us a bit about the paperwork again while we all stood near the open door, our sweet girl Stella Blue, was lying 5 feet away; and then we untied her and helped slide her body, heavy on the yoga mat, onto their gurney.  Once she was there, we paused. They said they could wait as long as we needed and shuffled off to give us space.

Amy cried and said goodbye to her sweet youngest daughter. I stared at Stella’s body. Emily, Kathy and Kaleo had experiences I was unaware of … I was clawing my way back to the present moment, obliterated from consciousness as usual, by my surroundings and far far away from myself.  We took the jewelry we wanted to keep. We touched her hands. It should’ve never ended, that moment. But the real moment we never wanted to end had come and gone already, two days before, when she took her last breath. Here she was no longer Stella the way we wanted her most. This was just her skin, her new unearthly, Stella face, her folded hands on her chest. Her used space suit.

Then the young ones came back and we said goodbye and they wheeled Stella away forever.  

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In the parking lot Kaleo, Kathy, Amy and I took a shot of Jamieson and toasted her safe travels from this realm to wherever she was going next, most likely everywhere all at once; the All Place we’d named it.

I turned away from my people; across the parking lot was a freeway and across the freeway was a Cancer Research building.

I’m sitting in her room now, the room that doesn’t have Stella anymore. Now she’s truly gone from our care and Amy and I start the new world where all the hours of the day we used to take care of Stella – before she was sick, as well as during – all those hours, are ours to figure out what to do with.

It’s simply not a reality, even after all the days of nursing and knowing it was coming and after leaving her body in a Georgetown - esque, biker shop-like crematorium in Portland, I don’t believe she’s gone.  It doesn’t seem possible.  My dreams are task-oriented anxiety dreams about wrapping her body, tilting her head on the pillows just right, and more wrapping of her body.  I wake not knowing if she’s gone or not.

Details of a memorial coming soon. 

Best, Hans

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It’s almost three years later. I wrote this on Caring Bridge on March 2, 2020. Amy and I no longer live together. I have a new partner. I have an apartment on Capitol Hill. Charlotte is 23 and finishing her last year of UW. I’m still running my construction company. Stella would be 17.

And, this just happened, Stella leaving us, yesterday it feels like. I’m pretty sure I will never pull away from that time, I’ll be stuck back there, partly, forever. I want to be … at least now I do, because then I’m closer to her, closer to remembering. If I let go, won’t I forget? And move on? I don’t want to leave her. I want to stay right there, at the edge of the bed holding her sweet hands in mine and wishing she’d keep breathing.

I write to remember. I’m extremely worried about my long term memory in general…always have been.  So I write to remember; to remember the way I feel and what actually happened. I look at photos of her because I need that food, the visual reminder constantly, of what she was before. I judge that I need images for memory, Amy doesn’t…what’s wrong with me, but I do and complaining about it doesn’t help anyone. I’m just worried I’ll forget parts of her.

I’m worried I’ll forget. So I’m writing all of this down.

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Below is a word from Stella, November 17th, 2019