This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … and some of them are raw, and hard to swallow.
refocusing the flame
March 15 / Working with M was the cherry that came after caretaking. Nathan has eaten part of it.
March 17 / Bawled in pm … Letting go of “needs”. Long ago loss of church (we called it meeting) as support and home, 4N405 as home, Mom and Dad as home, land requirement as home … letting go of a need/want for all of that in order get rid of the holes, and feel whole.
It's clear that in the thick of things (sorry Nathan), I wasn't all about trusting and accepting and doing things out of love, there was still a lot of I Want and I Need and I Deserve getting in the way of going full steam on the good that was in front of us. Full steam was really half steam at this point, and we still couldn't seem to find a rhythm that worked.
Michael signed up for a Sol LeWitt art install in LA in April. I knew it was right, but didn't relish the thought. The boys sadly gave up on going to TN for a camping trip, it just couldn't be worked in. Fynn started countless projects that stalled for lack of help from his parents. Cousin Ashriel came for five days, and he and Paul helped Douglas belatedly celebrate his 17th birthday. The deck re-do got underway, and Dad came over often to help. Nathan finished up his work, and headed back East.
The boys got roped into the cover-the-floor/clean/scrape/power-sand/spack/hand-sand/touch-up/vacuum/clean/paint routine on every wall and ceiling in the house, and did a lot of yard work and deck work too. Mid month, the deck was looked at by Bernie (our architect friend, the kind that spends all his days off helping you with your projects and then tries to take you out to dinner) and the half-fix we'd been pursuing was deemed unwise. The deck was ripped out down to the piers, and started over. I painted trim and windows till my eyes crossed. Menards started feeling like a second home, and the receipts piled up. In sync and full steam or not, we were making real progress.
Martha was in town when her birthday rolled around in early April, and she sat with Mom that morning. I chose to go to church with my family, and most folks stayed around for pot-luck dinner afterwards. Dad went straight home to be with Mom and Martha for lunch, and I felt a strong urge to do the same, so followed him back to Park Ave. Mom didn't seem to be feeling well, and was reluctant to eat much. I fed her while Dad ate, and the four of us sitting around their small kitchen table filled it up perfectly. I didn't know at the time, but I believe it was the last meal she took at the table. She started sleeping more and more, and wasn't really into eating or swallowing much. Dad realized she was hitting the “all sleep” stage, and fought it a bit just to make sure. We were back to where we were three months ago in the hospital … sad, torn, and getting realistic about her prognosis.
Stephen took the lead in getting funeral plans started, doing lots of research, and organizing things to share with Dad when he was ready. My very first reaction was “aren't you assuming a lot?” but I very quickly became thankful that he was taking the lead on it all, and saw he was clearly right that Mom's time wasn't too far off. Martha decided not to go back home, though she'd only planned to stay for a week, and we started showing up almost every evening at Park Ave for a sing around Mom's bed. The fact that she was at home, and all of us kids were there, made it all so much nicer than it could have been.
April 16 / Mom tried to purse her lips for a kiss!
I started spending most of my days at Park Ave too, and Rene adjusted to feeding increasingly unpredictable numbers of people. We all were softer, and sometimes edgier too, depending on where we were at in our processing. Every day I wondered if this was the day I should spend the night, just in case it was her last.
April 17 / Read to Mom my friend Hannah's vision of being presented in heaven to her Father. Cried.
April 19 / She woke up a tiny bit. Last day she was up in the wheelchair.
On the 20th, I stayed the night in Mom and Dad's room. She hadn't been awake all day, and seemed to be completely unresponsive. Once Rene got her as comfy as she could in bed, on her side to ease her rough breathing, Dad and I shared the watch. I spooned with Mom all night in her hospital bed, watching her breathe. “Can you not watch with me one hour?” playing through my head. I was utterly exhausted, and dozed on and off. Woke Dad at 5 when her breathing got really shallow, and we watched her till the sun came up, wondering if she'd go as it did. She didn't.
Mom skipped a few breaths in late afternoon, then was once again steady all night. I tried to watch with Dad, but we were both so exhausted he decided we should just go to sleep, and trust that she'd be there in the morning. She was. I slept in the chair, but from 12 to 1am I perched at her side and watched. I was reminded of Douglas' birth. “When will it ever happen?” This too was a real struggle for the energy to see it through.
April 22 / Harder and blurrier and clearer at the same time. Why is she still here? So close but in limbo. Hasn't been responsive for three days now. All in a turmoil at the house. Dad took the chair and I fell asleep in the bed next to Mom, at some point managing to wake Dad with my snoring. Without his hearing aids, he at first thought Mom's breathing had changed!
I dreamed that I was in a concrete room/hall at the corner of an industrial building, and there were people milling about but no seats. Fynn's cat Sparrow (a skinny version of her) was wandering around people's feet, and I realized someone was putting out food for her … oh … there it is. I go to look, and realize it's her brother Edmund's severed head (body eaten away but no blood) and he's still alive and not suffering. Just helpless. Ugh. I didn't pet him, how can you pet just a head? I wanted to find Michael so he could put Edmund out of his misery, but realized that killing a head is harder than a body. Crush a skull? Distress. Woke up disturbed, but more so than I was in the dream itself. Fear of interpretation I think.
Mom was clearly Edmund, and I took it as confirmation that she wasn't suffering. That she was food for her sibling? That was a little harder to see, but we'd been wondering if Mom was hanging around to see her sister, who was due to arrive the next afternoon. I knew it would be very hard for Aunt Charlotte to see her that way, after not having seen Mom for over a month, and the huge changes in her during that time … yet perhaps it was necessary for some reason? Mom kept herself close for almost her entire life, and didn't really let that many people all the way in. She loved deep and hard, but didn't express her affections verbally to any but Dad really (oh those letters!) and yet we knew we were all well loved, and very well served. Her primary love language was acts of service, and birthday cards of course. To hang on the edge of life for a few extra days to see her sister? I think that fits her character perfectly.
Of course, when she didn't let go within an hour or two of seeing Aunt Charlotte the next day, despite even shallower breathing, I began to wonder. Now what? Don't we get to see and understand all the reasons why she's still here? The nurse came, gave her a bit of morphine, and said she could go anytime. I was fraying at the edges and desperate for sleep, and went home briefly to connect with my husband and boys, but left again feeling even more fragile than when I'd arrived. Somehow God lifted me up during the drive back, and I arrived back to Park Ave with a fresh shot of energy.
The 24th was another night spent curled up in the easy chair at the foot of the bed, straining to watch Mom's chest move as her breathing was so quiet as to be inaudible, especially over the oxygen that was on 24/7. The relentless focus on her state was exhausting, though strangely exhilarating too, and made it difficult to think about anything else. Once again, tunnel vision. We all spun in circles, trying to finish the plans and lists and documents that were going to be needed for her funeral, and all the people that might want to come to it. A pile of things that all hinged upon her death, which was closer than it was yesterday, but still unpredictable and unknown. Practicality and chaos bouncing off the walls, sometimes in the same room in which she was lying unmoving and unresponsive, her spirit still inhabiting the body that she could no longer control in any way.
The next morning, a Thursday, the watch continued, while Michael and Bernie were still madly working on the deck over at the old house. Only so many people can sit vigil, and as many as could were still going about their regular daily business. I went home for dinner with the boys, and realized how fragile they were. They knew what was coming, and found the whole scenario unsettling and hard to handle. I came back to Mom's labored breathing, and positioned myself in her room again. Others came in and out, caught naps, checked in again, and she was given a dose of morphine to try to ease her breathing. When Stephen checked in a second time, and didn't leave, I slowly realized that this was indeed the night. By 10:30 the room was full, with Dad, Stephen and Rene, Paul, Uncle Bill and Aunt Charlotte, Martha, and I. Michael joined us around 11. There were a few quiet songs, intense silence, and incredible focus. I held her right hand, stroked her arm, and told her in my heart to let go. Her face was turned towards Dad, and I watched him watch her. The emotions held in every furrow of his brow, move that he made, and breath that he took … remembering them now still takes my breath away.
The focus was hard to maintain, and my mind jumped around like crazy. “Cup of tea after? How is Aunt Charlotte doing? Did I make too much noise? Is Rene OK? Remarkably OK. My back hurts. I can't see her eyes at all, and am both glad and sad that I can't. Martha must be missing Tom. The air is filled with slight electricity. I can feel the hum.” It started to pour rain outside. Her body jerked several times, and her breathing paused here and there. “This is really really it! She's at the very last few minutes of life. She's almost free! She will see Him! Be whole! Be light!” Alternating smiles and tears. Slower. Shallower. Longer pauses. The longest pause … with nothing at the end. Dad closes her eyes. Stephen checks his watch, 11.21pm. We all draw in a breath, almost willing her to do the same, and feeling the incredulity that we still can, and she can't. She's crossed over.
Dad says “Let's pray” and does. I open my eyes after a few words, not able to stop watching her neck. I see the tiniest flutter. (I don't process until a bit later that I don't think she quite let go until he did. I am stunned, but not surprised.) He finishes thanking God, and we all do whatever comes into our heads. I say “Welcome home Mom!” to her still body, lay down her warm hand, kiss her cheek, give Dad a hug, and slowly walk out to the other room.
She is gone. Immeasurable relief and so much joy for her. Awe at the experience. At getting to walk her to the very door. She is Home.
The next phase begins.
Tea is brewed (I wasn't the only one with the thought), calls are made, Dad is left alone with her. The hospice nurse gets lost, and arrives very scattered and out of sorts. I go back and sit with Dad for her visit, and stare at Mom's body, marveling at how it's already started to change. The nurse is very kind, but off kilter. She never quite recovers, has to be called back to remove the forgotten catheter, and is still there when the funeral home director arrives. Perfunctory condolences are given, details discussed, funeral times set, and the room is somewhat crowded and chaotic. Unused hospice supplies are being handed to the nurse to take back, she is reaching behind the funeral director to grab them, the funeral director is asking about bed sheets and whether we need them back, and Dad and I realize that this is the moment where Mom's body … Mom who was always claustrophobic … her body is about to be wrapped up in a sheet and put into a colorful paisley body bag and zipped up. I feel glued to a horror movie, as Dad also realizes what's coming and tries not to look from where he's still pulling supplies out of the closet, but he feels what I'm watching ... the wrap, the lift, the slide, and the zip … and he can't help but glance over at the very end of it even as he's saying “That is something I DON'T want to see.” It's heart-shakingly final. Her spirit is gone, and her body has left the house.
After a few more details, I give Dad a big hug, knowing he needs to be alone but I'm heartbroken for him. Michael and I climb in the truck and head home, my first night there in six days. I am motherless.