Tag: motherhood

Coming Home to Die

I heard an excellent story on NPR the other day, about How Doctors Die, and how even though the majority of people in the U.S. say they want to die at home, surrounded by loved ones, less than half do and most die in the Intensive Care Unit (ICU). In Tucson, where I’ve lived the past 8 years, only 10% die at home. This is partly because when we are very sick, doctors are not likely to tell us the whole story, and we are not willing to ask the important questions – what are the implications of this treatment, what will be the quality of my life, how much time might this treatment add to my life, what are the risks and benefits…?

it reminded me of how difficult it was for the doctors to tell us what was really happening when Elizabeth was in the ICU. She’d had 2 chemo treatments when the lymphoma had spread to her brain, that had not shrunk the tumor. She’d had brain surgery to “debulk” the tumor, which had reduced the size of one tumor, though now we learned there were two in her brain, and probably more in her spine. The surgery had increased the swelling in her brain, necessitating a 2nd surgery to remove part of her skull, and then a stroke left her paralyzed except for her right arm and head. She was intubated, meaning she couldn’t speak, and it was so painful that she tried to pull the breathing tube out if her hands were free.

Elizabeth had told me clearly when going through her first chemo treatments: “Mom, I don’t want to go through years of treatment for cancer only to die of it. I don’t want to live like that.” I looked at her and I said “you won’t”, knowing somehow, that it was true, she would not.

But the doctors were still coming to the ICU each day and telling us she could go to rehab, learn to walk again, she’d need radiation to her brain, a different chemo drug…and I was a believer still, not yet seeing what was in front of me. Powerless, and still hopeful. Around the 6th night she was in the ICU, in the hallway, our favorite nurse said to me “I heard from your friend that you’re starting to talk about hospice.” I was shocked. That was the first time I’d heard the word used in relation to Elizabeth, and we had NOT started to talk about hospice! I was angry at her, felt violated and that she’d crossed some line. Only later was I incredibly grateful for the one brave woman who would dare speak the truth.

The next morning, after some time had allowed this idea to sink in, I asked the oncology team to tell us what was realistic. Did hospice make more sense than planning to continue treatment? Only then, when confronted, did they say yes, hospice was probably the way to go, that the treatments being discussed weren’t likely to be successful. They also passed it off to Elizabeth’s specialist, who had never come to the hospital, saying he’d have to talk to us for the final word. He came that day I think, and sat with me and Greg, and told us that she could try more chemo, or radiation, but it would likely only add days or weeks to her life and he didn’t recommend further treatment. There was no question in my mind that Elizabeth wouldn’t want that, and I didn’t want that for her either. All I wanted then was for her to come home, be out of the ICU, in a beautiful, peaceful place where we could care for her ourselves. Dr Miller also told us that if he let himself, he’d be sobbing along with us, but he couldn’t. That he wanted to be the hero who saved her, and he hated that this wasn’t the way the story was going to end. I know he didn’t want to be there either, having this conversation. No one wants to be the one to tell the parents of a 22 year old young woman that she will die soon.

We still had to fight hard to get her breathing tube removed, as she had a hard time passing their breathing test, though she was breathing on her own. The ICU doctor was afraid they’d have to intubate her again, if she didn’t have the strength to continue on her own. I knew she’d be fine, that she needed to get the breathing tube out, so we could take her home.

Elizabeth in the ICU

Finally, after days of promises and disappointments, they removed the tubes (partially because her dad had a rare, but necessary, blowup at the ICU doctor). She breathed fine, and she could speak again! I then told Elizabeth what Dr Miller had said, that there were no more treatments to try and she could come home. She looked at me and said, “I’m relieved.” I looked in her eyes and said, “I understand.” Elizabeth said, “I’m so glad you understand! I was afraid you wouldn’t.” I told her of course I understood, that she had done everything she could possibly do, and I just wanted her to come home where I could take care of her, and she wanted that too.

She’d had a feeding tube in, and as soon as her hands were free, she tried to pull it out. I explained that she might not be able to eat, as we didn’t know if she could swallow still, and asked if she understood what that meant. The doctors advised against it. She said yes, she wanted it out, and got it most of the way before a nurse could help her. Once that was done, and she wasn’t attached to the machines, we arranged quickly with hospice for a bed to be delivered to our home, and she came home the next day, after 10 days in the ICU.

Elizabeth at home in hospice

If that nurse hadn’t spoken up, if we had been compliant and unquestioning, if we didn’t have great family support, a friend who is a doctor…Elizabeth might well have lived her last weeks in the ICU, hooked up to LOUD, painful, machines, with ICU psychosis (an actual condition they acknowledge there) from bright lights 24 hours a day, nurses waking her up every few hours, not able to speak, eat, laugh or just be.

roses on the altar

As it happened, she came home and lived two more extraordinary months. The most beautiful, grace-full, love-filled times I’ve known. There was healing and completion in many relationships. Time with her sister. Visits and laughter with family and friends. Singing bowls played. Silence. Books read. Poetry listened to. Soft sheets. Daily massage. Cuddling. Favorite foods. Music of all sorts – from Graceful Passages, Beyonce, Ashanna and Wu-Tang Clan. Fresh roses and altars with sacred objects. Soft light, birds, flowering plants and trees outside the windows. We had time to talk of fear, of death, of love, of acceptance, of regret and loss, and joy and peace…It was so beautiful. And I am so blessed to have shared that time with her, and so immensely grateful it happened the way it did.

If I’m very lucky, I will die as she did (except for the Wu-Tang Clan), surrounded by love, being loved, and being Love.

Elizabeth and Lucia’s hands

Elizabeth with her Grandma, at home

I recommend filling out 5 Wishes, a living will written in plain language, that gives great options for how you might want to be treated if you can’t speak for yourself. Take some time to think about how you want to live and how you want to die…

December 3, 2013
Elizabeth’s Gifts

Elizabeth loved clothes. From before she could speak (which was early!), she was in charge of what she wore, and as soon as she could dress herself, she did, always with several changes of outfits, sometimes before we even left the house in the morning. This theme carried throughout her life, with her love of spending hours in thrift shops and used clothing stores, searching out the perfect pieces, always combining them in ways unique to her. She would often select items that seemed way out of style, or really unattractive (to my eye), but then she’d put an outfit together that was truly a beautiful form of art.

Elizabeth Blue in a favorite outfit, self-portrait.

It was one of her greatest artistic expressions, and one she had innately, but was also enhanced by her adoration of her godmother Victoria, who has a similar gift. I think Elizabeth’s also came through her genes, but skipped a generation or two, as I have never cared about clothes in this way, though my grandmothers did, and Julianna, my younger daughter, has an equally unique and artistic style, though quite different from Elizabeth’s (she used to dress in British school boys’ uniforms in public middle school in California…but that’s another story!)

Last night I took a bath, and searched my closet for a bathrobe to put on after. I found this white, silk, kimono-style robe that was Elizabeth’s. I put it on and realized that it fits perfectly, is incredibly comfortable, flattering, and the robe I’ve always wanted…and I remember well the day she bought it.

In June of 2012, Elizabeth’s cancer had recurred, in her brain, and she was receiving high doses of chemo in the attempt to cross the blood/brain barrier, that is there to protect our brain from toxins that can harm it. She was on several medications to prevent seizure and reduce swelling in her brain, and we had some idea of how serious this all was. I can see now, in hindsight, that she understood, or knew, that she was most likely going to die. I did not. I was steadfast in my optimism, only allowing in what I needed to get her the best possible care she could have. With the recurrence and spread of cancer, in addition to the allopathic treatment, Elizabeth was open to adding all complementary methods as well. She was seeing an oncology naturopath, who prescribed many supplements to be taken throughout the day, on a strict schedule, to enhance the chemo regimen. She was scheduled to do a hypnotherapy session, and had started physical therapy to maintain strength, as she couldn’t do much yoga, being weak and dizzy. As it turned out, the cancer was growing too quickly, and nothing could change what was her ultimate path.

Elizabeth and Kathleen sharing some delicious raw food, with that bag full of supplements to enhance the chemo regimen. June, 2012

So our dear friend Kathleen, who is an amazing healer and has an advanced understanding of the healing power of raw food, drove from Colorado to visit us for a couple days, and share some of her knowledge with us. Elizabeth adores Kathleen, was thrilled that she’d come out to help, and was aware what a loving and generous gift it was for Kathleen to drive 2 days each way to visit! The first day she was here, we made a big list of food we needed, and headed over to the food coop to shop.

Across the street from the coop is one of Elizabeth’s favorite vintage clothing shops. Well, there was something she HAD to look for that day. Kathleen and I were at first agreeable, and wandered around the store for a bit, but didn’t see anything we needed, though I think we played with hats for a while…After half an hour or so, we told Elizabeth we’d go to the cafe next door and get some iced coffee, but she needed to finish up. It was over 100 degrees that day, and we were tired. After a while, I went back to check. She was still trying clothes on, and I was really annoyed. I felt she wasn’t being respectful of Kathleen’s time, that we only had a couple of days to learn as much as we could, and she was “wasting time” by spending so much of our afternoon trying on clothes…This was always a favorite activity of hers, and I didn’t have much patience for it, though I now wish that I could have found a way to spend more time with her doing the things she loved.

Finally, she made her purchase – a white, silk robe, that she felt she really needed. We went across the street, did our food shopping, and went home, all three of us tired from the heat and the outing. Kathleen continued to teach us and share her wisdom, and it was an amazing few days we spent together. Elizabeth diligently ate raw foods even while in the hospital, up to the time she came home to hospice care, when she went back to eating cooked foods, all her favorites…

She only wore the white robe a few times. When I put it on last night, I felt her presence, and felt that she’d perhaps picked it out for me, as well as herself. I’d almost given it away, but something had said to keep it, even though I thought it wasn’t my style or size, and I remembered so clearly the day she bought it. As I was wearing it last night, it felt like it was custom made for me, the size, shape, texture, color…I love it. I just heard “it’s an early birthday present” – my 50th birthday is in a month, and Elizabeth always bought or made me very thoughtful presents, and wrote me beautiful cards. I will miss her especially on my birthday.

When I hung the robe up this morning, and was thinking that perhaps she’d had me somewhere in her mind when she chose it (selfishly, I know), the tag caught my eye. “Esme” is the name, and I caught my breath – that is a name Elizabeth considered for herself for years, and used for her email address, though she spelled it Ezme, with wonderful layered meanings. It felt like another sign from her, and it’s lovely to feel her close as I wear this robe, for many years to come. Thank you Elizabeth, for this gift.

November 24, 2013
Deconstruction and Re-creation

“Death is not a separation but a different form of communion, a higher form of connectedness with the community, providing an opportunity for even greater service.” ~ Malidoma Somé

I’ve not written here for a long while, and I’ve been missing it, but also dreading it, for a few reasons. One is that I want to write about Elizabeth’s death, and how we cared for her body, and that has felt difficult to begin. Another reason is that I’ve been afraid of “running out” of Elizabeth’s writing to share, as it is a finite source. Though there is an abundance of her essays and poems still unearthed, some part of me feels that she will die again once all of her writing has been shared here…I feel a need to savor each piece. And I know there is no hurry from all of you, but there is an internal message to continue, and when I ignore it, it gets louder and creates more tension, so I am listening.

And last, I’ve been very busy, as I’ve been getting my home ready to sell, and planning to move to Hawai’i. I’ve known for a long time that I would be leaving Tucson, but didn’t know when, or where to. During the first year after Elizabeth died it became clear that the time was approaching, but that I needed to stay here, in the city that she loved, and in the home where she last breathed, at least until the one year anniversary of her passage. First though, I had a revelation – I realized that some part of me believed that if I left here permanently, Elizabeth wouldn’t be able to find me. Now, I know that she is with me wherever I go, and she lets me know that she’s with me often, answering questions when I ask, and showing me signs that are clear it’s her presence. This felt like something else. I’m not entirely sure about past lives, but this felt like it was from another lifetime, a long-ago memory that surfaced: that of being a mother in a home that had been under attack, perhaps had been bombed, and it was time to leave or else risk dying myself. But in this memory, my child had left the house, and I was afraid that if I left, she or he would never be able to find me again, and would be in great danger and feel abandoned. It is still a vivid “body memory” and moves me to tears, and it feels like possibly a past life that Elizabeth and I shared. Once I realized that some part of me was carrying this belief, it started to loosen its grip, and I knew that I could leave this home, and not be abandoning my child.

So a couple of weeks before the one year anniversary, it became clear that the time has arrived for me to move to Hawai’i, and that there is great energetic support at this time. (This has been discussed for years, as my partner is from Hawai’i, and we’ve spent a lot of time there, as it is where we have a second home and offer our spiritual retreats.) Once the anniversary date passed, on September 23 (and that is another post!), I set a date to put my house for sale, and started readying it. This meant giving away anything that I wouldn’t be taking or putting in storage, and putting away most personal photos and spiritual images – and there were a lot! I did it in stages, and it was many-layered. Each round I’d think I was done, and then realize there was a whole other layer to clear… I’d had an altar set up for Elizabeth since she came home from the hospital into hospice, that now held her ashes, along with some of her most precious belongings, things from her altar at her home, gifts from friends and family, and several photos of her. I knew that I could leave it up, but over several weeks it seemed to take itself apart, bit by bit, until I realized that it was no longer needed at all. She is with me always – sometimes so close I can’t believe she’s gone, and at the same time farther away, my memories less vivid, my sense of her presence as more diffuse…

One Year Anniversary Altar – 9/23/13

One of the ways Elizabeth sends me messages is through music. In my recent busyness, I find that my grief is present less often, but emerges from a deep well of emotion. When I’m alone, and quiet, and still, it emerges, often from a connection to Elizabeth through music or an image. I listen to Pandora, with about 25 stations on shuffle, including a wide variety of musicians. Every once in a while, when I’m missing Elizabeth to the core of my being, and talking to her, asking how is it possible that she’s not here anymore, and a song will come on. A few songs in particular: Here Comes the Sun, and Angel from Montgomery are two – songs that I know Elizabeth loved and that she knew were my favorites as well, and I am brought to my knees, with sadness, gratitude, and joy, as I feel her letting me know she is there, seeing me, connecting with me, and comforting me.

November 12, 2013
Beginning to Leave the Hospital by Elizabeth Blue

(One of Elizabeth’s essays when she was almost done with her first (and we thought only) round of chemo, followed by her musings on titles and structure for the book she planned to write about this experience. God I love her mind and and am so grateful to have these writings…)

Elizabeth Blue, Spring, 2012

Beginning to Leave the Hospital

March 5, 2012

I feel like I’m only now beginning to walk out of that hospital.
UMC, the day after they diagnosed me. The day after they told me it was cancer.

I was lying in the hospital bed drugged up on morphine right after surgery (my first surgery) and my biopsy. I looked at my mom all swollen with makeup running down my face and said to her (smiling) “If it is cancer its going to be ok.” And she said “Yes.” And then a few hours later they/the surgeon came to tell me it was indeed cancer.

I feel like only now, approaching treatment six, (the last one please god). Chemo round one, round two, round three, round four and round five are done. Whew. I still feel like I’m in the hospital.

The shock: the utter senselessness and cruelty of being beautiful and twenty-two and having cancer is just starting to wear off and the feeling has begun. The feeling of having had cancer. I feel like the shock and senseless and sudden, unprovoked tragedy of it all kept me mentally in the same room it all happened in until now. Now, six months later, my mind is beginning to catch up with the body that gathered her things from that room, left the hospital, went to school and told her family and teachers she had cancer. And got on with it. Took the treatment like a grinding kick in the face and a wet cold punch in the stomach, week after week and sat there quietly and didn’t say anything. And didn’t yell at god or the world or the doctors for A: letting this shit happen and B: letting the treatment, the cure be so goddamned miserable that it destroyed her feeling and her heart and her youth and made her lose her hair and the oh dear god, fucking pic line.

They called the thing they put in me a Pick Line. THEY CALLED IT A PICK LINE, WHAT DOES THAT MEAN TO YOU? They put this tube into my veins and all the way down into my heart and I didn’t want it and I didn’t understand what they were going to do until they already were doing it. They exposed me to way too much radioactivity in the process and sewed it up into my skin like it was no big deal and it hurt, it fucking hurt.

Then there was this big gaping wound and a tube sewn into my body permanently and they forced a long tube into my heart and I didn’t want it and it wasn’t necessary and that was the worst rape I’ve ever experienced. And I never cried. I sat there and was good and quiet and cooperative because I trusted that they knew what they were doing and that they could save my life.

And they did.

But me, the real me who talks and has feelings and still can’t comprehend the fact, that cancer was inside of me, that it even could be. The me that still can’t wrap my head around something so unfair and unpleasant could happen to the blessed child who led a charmed life. She (that me) is still in the hospital. Because the shock, the pure and blessed numbing shock of the news that cancer was in me froze her in time. It froze her so the me who is numb and unfeeling and quiet and detached and removed could take over. Take the chemo, take the treatment, take the tragedy. And hold space for the sadness of others. The me who I generally associate with is just beginning to de-thaw in that hospital room, shake her head and wonder how the fuck did I get here and where do I go now? I’m hoping, I mean I think, she can come join me now.

(Musings on her future writing…)

Elizabeth Blue, with Blue, Spring, 2012

The Stories We Will Tell Our Children
The journey of a 22 year old cancer survivor

By
Elizabeth Blue

Why this title is important:

Dr. Miller told me on our last meeting that all this would just be a story I would tell someday (an unpleasant one)
The realization that I want children came with having chemo and being told I couldn’t.
My children will exist because I had cancer not the opposite (strange)
This is my history
Buildings, ie hospitals and doctor offices are going to be the transitional and pivotal star points for this experience. THIS IS THE STRUCTURE FOR YOUR STORY ELIZABETH. IT HAS ALREADY BEEN GIVEN. THIS IS LUCKY. BUILD THE STRUCTURE/SECTIONS/CHAPTERS OF THE BOOK AROUND CHEMO ROUNDS AND HOSPITAL VISIT AND DR. VISITS.
Interview Mom, perhaps others as an example of how narratives vary
talk about trauma theory and troubles with perception
there is a lot here.
Now, should it be a biography or just this story?

Other ideas include:

“High Tales and Desert Winds”
“For My Mother”
“Coming Home”
Mama: How having cancer brought me back to my mother (The journey of a twenty two year old cancer survivor.)

©Elizabeth Blue, 2012

October 5, 2013
The Enormity of it All

The Enormity of it All

Lucia Maya and Elizabeth Blue, April, 2012. photo by Jade Beall

Yesterday I was having lunch with a dear friend, who is very insightful and intuitive, and has two sons the same ages as my two daughters. She asked me, with concern, for the second time in two weeks, if I was really taking the time and space to allow for the enormity of what has happened. It felt like she was asking if I truly grasped the magnitude of what has happened to me, my daughter’s death a year ago. I didn’t really know how to answer her and I still don’t.

On the one hand, I started to feel like maybe I wasn’t doing this grieving “right”, which I’m sure was far from what she intended. As a mother, it’s such a familiar place to go: if this looks different, or is not what is expected by others, maybe I’m not doing it right. Though much of my mothering has looked “different” (as is how I live my life), and I can see things I could have done better, overall I’ve mothered the best way I know how, following my heart and modeling that for my daughters. Still, it’s easy to be vulnerable as a parent, to question if we’re doing the right thing. Guilt seems to come along with parenthood and the enormous responsibilities we’re honored with in bringing someone into the world.

What I said to my friend is that I feel like my main work now is healing through grieving, and taking the time to heal in whatever ways I can. For me, this means a lot of time alone, listening to music where I often receive messages from Elizabeth, meditating, reading, watching tv on netflix for hours when I need to (all of “Orange is the New Black” during 2 really hard days). It means getting acupuncture and bodywork, talking to good friends, asking family to be around for difficult times, like birthdays and anniversaries, asking for support…It means saying no to many invitations and events, listening deeply to what I really want to do, and leaving when I’m tired and feeling full. It means spending time with my younger daughter, visiting her more often, connecting with her and wanting to be closer with her.

It also means seeing clients, offering the healing work I do, which I love – it helps me to focus on someone else, listening with my full presence, feeling like I’m in service and contributing, and it makes me feel better as I receive the Reiki as it flows through me to my client. Teaching Reiki and facilitating healing circles and retreats also brings me joy, and is another way that I feel Elizabeth’s presence, sitting with me and supporting me, as I ask to be the clearest channel for the teachings to flow through. It also allows me the opportunity to share some of what I learned from Elizabeth about living and dying with grace, which helps bring some greater meaning to this intense journey of transformation.

It means writing, combing through my emails and journals, Elizabeth’s writing and photographs, and sharing these with all of you, listening for the guidance about the timing. Receiving feedback about how this affects you has been an amazing balm for my heart.

But, am I able to absorb the enormity of what has happened, that my adored and beloved and challenging and worrisome and beautiful and smart and difficult and adoring and creative and wise 22 year old first-born daughter has died? No, absolutely not. Do I cry as I write these words? yes. There is no way I could absorb or take in all of this, even one year later it continues to seep in, little by little, day by day, and I do my best to stay present to it, to grief, stay present to Elizabeth’s spirit, stay present to my living daughter, Julianna, stay present to my partner, and mostly, stay present to my heart.

September 29, 2013
Leaving Her Body…

Elizabeth Blue ~ April, 2012 by Jade Beall

One year ago today, the email below I sent to our close friends and family. Now I share it here, with those of you who have joined me on this transformative, healing journey.

As I prepared for this first anniversary of my daughter Elizabeth’s death, I anticipated it would be challenging. I’ve been learning how to care for myself, my needs, better and better throughout this time, so I asked close family and friends to gather, a very small group who knew and love Elizabeth (and me!) dearly, to come and spend time together. We’ve spent the last couple of days telling stories, looking at photos, doing art projects with Elizabeth’s image, eating, laughing, resting, loving Elizabeth and each other…

We plan to begin the process of releasing her ashes today, spreading some in one of her favorite places in Tucson, with plans to spread more in Berkeley and Hawaii later, two of her other favorite places. I honor her and remember her every day, and oddly, today doesn’t feel as momentous or intense as I expected – I’m wondering now if the emotion will come when everyone leaves and I’m alone again…in this first year, even the hardest days have been fine, as I’ve watched myself experiencing emotion like never before, and always able to be aware that it will pass, that all I need to do is be present and keep trusting my heart. Thank you all for being here with me in this first year. Your presence from near and far, old friends and new, strangers and family, has meant so much. I am so grateful for each of you. Thank you.

Leaving Her Body

September 23, 2012

Dear Ones,

Elizabeth left her body this morning around 4:30 am. She was peaceful, she knew I was right with her, holding her hand, talking to her and loving her. Something woke me at 4am, and I went to check on her. As I heard her breathing, I knew she was very close, and sat down to be with her. I was thinking it could be a few hours still, so was about to lay down on the couch, when I heard her take one breath, and then realized it was her last one. Her heart continued for a while…

Since yesterday morning her breathing had changed, and Greg (her dad) and I had spent the whole day sitting close, talking to her, telling her how much we love her, and how many people love her and have been affected by her. She was mostly in another world, but every few hours would open her eyes, and was still so clear, with the same love and grace in her gaze.

I am so grateful for the gentle waves of these passages, that each new wave has washed over, giving me time to adjust, to accept, to move into the next stage gracefully, diving in deep and emerging with an ever more cracked open heart, and knowing there’s still more and still more….

As usual, we are doing something a bit unusual – we are keeping Elizabeth’s body at home for a few days, having cleaned, anointed and prepared her body ourselves. We will have a visiting time here, for anyone who is in Tucson, if you want to say goodbye to her body, and connect with me and family. She will be cremated in a couple of days.

We are also planning a large, public memorial service in 2-3 weeks. We will honor and celebrate her life, with music, stories, photos and her poetry. Do not feel you need to come and see her body, it is simply a possibility if you want to say goodbye in this way.

More to come…

love and blessings,
Lucia

This photo is of her last night, still beautiful and at peace.

Elizabeth Blue her last night, 9/22/12

Elizabeth Blue, April, 2012 by Jade Beall

September 23, 2013
Slowing Down – emails from the depths, September, 2012

Slowing Way Down

Some of the last emails I sent, about my older daughter Elizabeth Blue’s journey towards the ultimate release, from the two weeks before her transition last year.

September 14, 2012

Dear Ones,
things here are slowing waaay down. No words now, sometimes nodding or shaking her head in response to a question, sometimes that seems too much effort.

Elizabeth still has no pain, is comfortable and has no fear that I feel…there are lots of folks assisting her, both here and in the other realms too. She’s not eating still, and only taking small sips of water. The hospice nurse and our doctor/friend Ann Marie assure us that all is progressing as expected and in the best possible way as far as being peaceful and comfortable. Even throughout the day there are changes, as tonight she had a hard time taking one of the medicines through a straw, so we skipped that one…it’s probably only days left now, but it’s still hard to say. She’s breathing fine, a bit different now, and very inward, very much connected with the other worlds now.

Today 10 of Elizabeth’s friends came to say goodbye, led by Samantha, her closest friend, and it was so beautiful. Full of tears, laughter, stories, reminiscences – they each took a turn holding her hand, kneeling by her bedside and talking to her, kissing her, loving her and telling her goodbye. It was exquisite. They were all so loving, so respectful and sweet with us. Amazing.

Feeling how precious we each are, remembering to tell those you love how you feel, letting the small things go, knowing that each day is precious, each smile, each kiss… for us all, not just Elizabeth.

sending love to you all ~ if you’re receiving this email know that I love you.
love,
Lucia

Elizabeth’s best friend Samantha and their circle of friends came to say goodbye, 9/14/2012

Lucia and Elizabeth snuggle, 9/12/12

September 15, 2012

…a rare and REALLY hard day, watching Elizabeth visibly recede, and I was compelled, like I was a zombie, to watch some of E’s video diaries, of her when she was healthy, and then right when she was finishing chemo, and so hopeful and herself… it was beyond heartbreaking, and I’ve been avoiding going back and revisiting other times, but today i got pulled in. The rest of the day I can barely be present with her. Can’t sit still, am angry, rageful, so sad…

September 19, 2012

Dear Ones,
Elizabeth hasn’t been eating for 2 weeks now, except for these few times: it was lovely that she ate what seemed to be her last meal from Zelie, some fruit and toast for breakfast. Then 4 days later when Greg arrived, with her favorite dessert, carrot cake, she ate a few bites, and then our dear friend Tita brought by some food, and Greg prepared and fed Elizabeth a whole meal of beans, rice, avocado, quesadilla – all her favorite foods, and it was so beautiful, her being able to receive that from her dad, who has such a deep connection to food and sharing his love for people through food…Then I was writing to him about how lovely that was, and realizing that I couldn’t remember the last food I’d fed her, and felt really sad. A few hours later I offered her food again, (now days since she’d said yes to eating) and she said yes, as though she knew what I’d been thinking. I fed her a perfect peach, and she gave me the gift of being able to feed her one more time…

She’s had almost no water for that long too (just enough to take pills and a few more sips), though the last few days it’s been hard for her to swallow, so she gets no pills, only 2 medications to give now, both liquid. She has occasional ice chips, but often says no to that too.

She started having some pain a couple of days ago, so has had liquid morphine 3 times, but no pain yesterday or today. She still has tremors/shakiness so gets liquid lorazepam a couple of times a day for that. She’s sleeping much of each day, partly from the medication, and partly from having so little energy. She’s wanting to be alone more, doesn’t want any visitors and some days doesn’t want me around, which is different. So it really feels like she’s disconnecting from this world…

Given all this, it’s quite remarkable that when there are no medications in her, she’s still quite clear, with a small smile to greet me in the morning, and this morning gave a thumbs up to my questions of how she slept and how she was feeling…She still rubs her lips together when i put lip balm on, like she always has, just very slowly now. And she doesn’t want me to massage or put lotion on her now – it seems like too much stimulation, and bringing her back into the awareness of the body.

She’s not been talking for quite a while, but can still sometimes nod or shake her head, though even that takes effort now, using a lot of energy. She is still comfortable and seems very peaceful.

So there’s no way to say how much longer she might be here, though without any water it seems it can’t be much more. She is amazingly strong, and so courageous and loving. She did say yes a few days ago when I asked if she feels ready to leave, and if she feels that she’s completed everything she came here to do. That hadn’t been true a few weeks ago, so I was grateful to hear that.

Sending much love to all of you, and connecting at the heart…
love,
Lucia

Elizabeth today (9/19/12), with her newest blue bracelet and a silky blanket under her head, both from Aunt Tashe, with her bunny by her side. She’s wearing a favorite ring from my Aunt Amy. Surrounded and enveloped in so much love…

September 19, 2013
Some Days with Elizabeth Blue…

Some Days with Elizabeth

Preface: I am struggling a bit this week, the week leading to the first year anniversary of my daughter Elizabeth’s death. Partly for the obvious reasons – the intensity of this loss resounding in my body and mind and spirit to a degree that at times I can’t remember the simplest things, like where an acupuncture office is that I’ve been to a dozen times; I’m thinking of her constantly, with memories of her at all stages of her life popping up, sometimes making me laugh, often in tears…Today I smiled as I put on sunglasses and thought of Elizabeth’s love of sunglasses and how she always accessorized with them in the most artful way, and then I passed the hospital where she had brain surgery, and remembered the neurosurgeon sitting with me in the waiting area, telling me that the surgery was not successful, he could only remove part of the tumor, and that her brain was swelling to such a degree that he had to stop operating. At first I felt sad, and then I heard myself saying out loud “you were released!” and was able to smile and feel joy for/with her…

The less obvious reason I’ve been struggling: I’ve been posting these past year’s emails from Elizabeth’s and my journey and have had this strong sense that they each needed to be shared before the anniversary date of each update. But I’ve fallen behind, and the last few were posted “late” and I have several more to share before we get to the anniversary itself, in less than a week, on September 23.

It feels like the timing has been in large part due to Elizabeth’s guidance – that in the beginning she was urging me on, also aware of the dates and the timing being important, but as her spirit is moving to other levels, the earthly concepts of time are less important, so I haven’t received guidance to post as urgently in the past two months, and I’ve slowed down. Also, as I share these writings I (re)experience the journey, and it feels like there will be another sense of finality in sharing these emails leading to her transition…So this is all to warn you that this may be an intense week for you as well, if you read these in real-time. I’ll be sharing a month’s worth of transformation in a very condensed time, and you can choose to read them as they come, or you may prefer to take your time and stretch it out a bit. It feels important however, for me to share all the emails by this first anniversary. I will continue to share Elizabeth’s writing, as well as my own.

Elizabeth Blue, June, 2012

Though certainly sad on some level, ultimately my hope is that this story is as uplifting and transformative for you as it is for me. May these offerings bring you some comfort and inspiration on your journey!

This image is how I’m seeing her in my mind’s eye right now…

September 4, 2012

Dear Ones,
today I woke up, as I often do, to the sound of wooden bracelets lightly clinking together. Elizabeth’s bed in the living room is visible from our room, and I have a direct line of sight to her, so I can see her begin to move her right arm and hand, as though she is dancing slowly by herself, and making quiet music with her bracelets. She’s been wearing at least 6 bracelets for weeks, given to her by different people – 2 she was gifted from Tashe, my sister, one was a gift from Ann Marie, our friend and E’s doctor, and the 3 wooden ones are mine, gifted to me from my partner Zelie. Elizabeth has also been given rings from several women who’ve visited – as she plays with and holds their hands, they’ve been inspired/instructed to leave a ring with her. She enjoys playing with them and looking at them all.

I’ve been reading out loud to Elizabeth (one of my favorite things when my daughters were young, and still), and the first book that came to me was The Little Prince. I hadn’t remembered the story, but it was an amazingly perfect book to read at this time, for me very sweet and very reassuring, about love and the process of leaving one’s body. I highly recommend it for all. I’ve also been reading her Winnie the Pooh, which is lovely. We’ve been listening for weeks to the Graceful Passages CD, which she always says yes to when I ask, and also still loving the Coleman Barks readings of Rumi poetry. We have lots of beautiful relaxation types of music, which Elizabeth enjoys too. She likes being read to, and music, but then also wants time for quiet, when she’ll say no to offerings of words or music.

We’ve been enjoying this time of more quiet, more spaciousness, and Elizabeth seems to want to have time alone each day. (It is just me and Zelie here, with Elizabeth’s father Greg coming on the weekends from San Francisco.) It is a bit hard to know her preferences, as she might answer 2 different ways to the same question, depending on how it’s asked, so mostly I’m following my intuition and staying in the flow, reading her as best as I can, and trying to take care of myself too. It’s hard to tell also how much she understands, she has confusion and has little short-term memory, though long-term seems much better. Her expression is almost always neutral, and she only answers yes or no when asked, and if pressed might give a word or two explanation. She is still not stating anything on her own, or asking any questions, which is SO different from her previous expressive self, since she could first speak! She continues to smile so sweetly when we smile at her, and only occasionally expresses pain, her neck sometimes hurts when we turn her, but as soon as she’s positioned well, she’s not in pain.

This morning I was talking to Elizabeth about how hard it’s been for me to believe that she’s dying (throughout this process with cancer, and still, though I’m finally starting to believe it), and she said the same is true for her. (I was talking about a poem of hers I read, that startled me as it seemed to be speaking of dying, but then I realized it was written as she was preparing to leave Tucson for Seattle 2 years ago – it’s “Bird’s Nest”, here.) I asked if she felt ready, and she said no. I asked if she felt she needed to do or say anything to prepare, and she said no. So I said perhaps she’s not ready yet because today’s not the day, and that she would be ready when it is the day, and she responded with holding up crossed fingers, which was both funny and so dear and moving. It does feel that she is getting closer to the end, though it’s still really hard to see how or when that will happen. I’m doing my best to be present and live each day as though it could be her last, and my own as well.

Physically, she is having 3-4 episodes of tremors/increased heart rate each day (due to the tumor in her brain), and sometimes they bother her, sometimes not, mainly related to the severity. This morning was the most intense one – they’re similar to the full body shivering one might have when really cold, and include her torso and her right arm. The medication helps quickly most often, though it makes her sleepy or “numb” she says, so she prefers not to have it when possible. Her head continues to swell, and the tumor in her neck feels like it’s growing, especially as it causes some pain with movement. I think it moves the vertebrae out of place, and some healer-friends have been able to help it shift back several times, giving her relief for many days or weeks.

She has been eating well still, and drinking some. The other day, she was holding a rose, and suddenly I realized she’d taken a bite! Must have smelled really good…though she said it didn’t taste good.

Elizabeth still says she is not afraid, her mind is quiet, and she’s peaceful. I’m really grateful for that, and for each day. Sometimes I go into stories of past or future, and get overwhelmed with grief, but then I can simply move into gratitude for her presence right now, feel the warmth of her skin, look into her eyes, place my hand on her heart and feel that love, and all is well.

love and blessings,
Lucia

Elizabeth liked ice packs on her head – here she was being funny in this subtle way of hers…

Zelie and Elizabeth, September 4, 2012

September 11, 2012

Dear Ones,

There has been a noticeable shift this past week, as Elizabeth has stopped eating and drinking for the most part. She occasionally (every 2-4 days) has said yes to something – Greg brought her favorite dessert of carrot cake this weekend, and she had a few bites, and our friend Tita brought some wonderful beans and rice (another favorite) which she ate as well, but overall she’s stopped eating and drinking. We are not pushing her to eat or drink, simply continuing to offer, as we’ve been told that often the wisdom of the body is to stop, and that it’s a painless and easy way to leave.

For quite a while she’s needed some encouragement to eat – she might say no to being hungry, but then would say yes to a specific food…But something really shifted last Wednesday – she started only drinking enough to swallow her pills and then saying no when I asked if she wants more. And started saying no to everything i offered her to eat. Right after I wrote this, she said yes to food, and ate a peach…so it continues to change, but that was the only thing she’s eaten since a dinner on Saturday. There is this fine line between offering and encouraging or urging. I want her to live as long as possible, but don’t to prolong her life if it means suffering. It feels like the best I can do is listen to her, and when she’s not clear, then follow my intuition, knowing her as well as I do for these 22 years. I hear from others some concern about her not eating and drinking, and it certainly has felt strange as a mother, not to urge her to eat, but I continue to trust her and listen.

This has brought the reality of her leaving that much closer, and I am aware of how precious it is that I can massage her arms and feet, clean her skin, hear her voice (more rarely now), kiss her cheek… I am deeply grateful for the blessing of each day with Elizabeth still here in her body, and at the same time wanting to let her go, which is the most challenging contrast of intentions and emotions I’ve ever experienced. The grief is ever-present, and mostly just below the surface, as I stay with her in this journey, present as I possibly can be.

I’ve just finished reading “The Alchemist” by Paulo Coelho to Elizabeth, which I loved, and she seemed to enjoy, usually saying yes when I would ask if she wanted me to continue. It doesn’t seem she is following the story, but seems to like the sound of my voice. I’ve now started reading pieces from Anne Lamott’s “Tender Mercies”, and though I’d read it years ago, am amazed at how perfect each book has been for the process Elizabeth is in, and perhaps more so for me! She is not wanting music lately, prefers me to be with her, even if we’re not talking, though she still wants some time alone.

I keep delaying sending this, as things change each day, but I know many of you are wanting to know what life is like here, so this feels somehow like a lot is missing, but it’s still enough.

much love,
Lucia

September 17, 2013