This week it has been one year since my daughter Elizabeth had 2 brain surgeries. The first one, July 19, 2012, we hoped would remove the cancer from her brain, and the second on July 20 was done to save her life (for a time, anyway), as her brain had started to swell, and the neurosurgeon needed to remove part of her skull to allow space for the swelling. I anticipated that with these anniversaries, I would be brought back into the memories of that time. That I would relive all the sadness that came with learning that the surgery was not successful, and then that there was no more treatment and Elizabeth was not going to survive very long, most likely a couple of months.
Yet grief is rarely predictable, and I’m feeling peaceful, relaxed, perhaps a bit disengaged, but also very present. Even when I try to go back into the story, it is not enough to move me into grief. I was worried that I was becoming numb, but I am full of feelings, one after another, from sadness to gratitude, to joy.
I am not numb – when I talk to a new friend whose son also died, I am moved to tears when she tells me how seeing photographs of Elizabeth moves her so, and that she wishes she had lived so she could meet this amazing young woman. I was immediately aware, however, that she would not even know who Elizabeth was if she were still alive. Her writing, her wisdom, her beauty was not available to so many while she was alive. And so I find myself grateful, for Elizabeth’s life, and even in some bizarre way for her death – that if this was her time to go, that she did it with such grace, and that her writing and beauty is reaching so many.
Here are some of my writings from one year ago:
July 23, 2012 (still in ICU at UMC hospital)
I stayed up with her all night, the anniversary of my father’s death. Sitting vigil, not wanting her to leave to be with him on this potent day. Praying all night to my ancestors, her guides, all the forces, asking them to have mercy. She stayed that night.
July 29, 2012 (now at home with hospice)
Yesterday was a day of almost blissful peace, radiant grace and devotion. Today, I was kept awake after reading an email depicting the possibilities of a painful and frightened death for Elizabeth, and I couldn’t sleep, wanting to find someone to blame – the surgeon, (he shouldn’t have given us false hope, when he must have known he couldn’t remove the whole tumor), my partner Zelie, (for not being here, not wanting to be here so desperately she’d just jump on a plane without asking). But knowing that there is no one to blame, each is playing her/his part just perfectly, divinely orchestrated, and I’m truly grateful that Zelie is clear about where she needs to be, and she can’t help me here right now.
So today I’m more in that shattered grieving place, almost unbearably sad, but not unbearable at all, no story with the sadness, and even with the grief and the loss, aware it’s just another feeling and I can actually enjoy the experience. My worst fears are being realized (some of them at least) and I am in such a state of grace, being with Elizabeth in her radiance and her presence, that I can be at deeper peace than in my daily life. This slowing down time is just what i need. If i go into stories of who she might have been, grandchildren never conceived and born, no wedding and falling in love, no more writing and being seen as an amazingly gifted writer… and on and on, then I can be devastated, though not right now as I write this. Right now I see the story may all be about me anyway. Me having new “babies” being birthed, me falling in love and getting married, me writing and getting seen as my gifts, and hers, get shared with the world.
Victoria (my long-time friend and Elizabeth’s godmother) just called us soul mates, me and Elizabeth. E has written about us sharing the same heart, and I am certainly in the same field she is right now. I can’t think about much other than the moment I’m in right now. Elizabeth told me, when i was telling her of her friend Cailin’s planned visit an hour later yesterday, that I don’t need to tell her those kinds of things, meaning anything beyond what is literally right in front of her.
I asked her a few serious questions yesterday: if her heart stopped or she stopped breathing, does she want us to call 911 and have her resuscitated – she said no; and if she’s alive but can no longer make her wishes known, who does she want to make decisions for her – she pointed to and named me; and finally I could tell she was tired, so I asked if there was anything we could be doing to make her more comfortable, and she said “stop asking me questions”. I loved it. And stopped.
Today when she asked me how I was, as she does after I ask her, I said sad. She said she knew, and asked why. I told her I was going to miss her, and she asked when? I said I thought she was in the process of dying and I would miss her when she was gone. She asked what i thought death is, and I said when we leave our body. And that i’ve heard from many people who’ve died and come back that it’s a beautiful experience, more beautiful than anything in life, anything they experienced on earth. She nodded. I said I wasn’t sad about what she’d experience, I was sad about my experience of missing her, but I know her spirit will always be here. She nodded. I told her I had thought she’d always be here, and that was why I was sad.
Elizabeth’s been saying since her rediagnosis that she is going through a rebirth, and she went all the way back to the pre-birth state in the hospital: unable to speak, or even make sounds, unable to open her eyes, then being born: with the (breathing) tube pulled out, able to speak and breathe on her own, but still totally depending on others with a feeding tube and IV fluids, then removing those, and starting to swallow, to drink and eat, to speak again. And now, at home, still dependent, and yet completely reborn, with divine wisdom and no mind. Quiet Mind she calls it. She seems to be completely comfortable and at peace.
It occurred to me, that for her to get to this state of peace, she was willing to go through cancer in her brain, 2 brain surgeries, a stroke, and now the deathing process, to move into this state of grace and divine mind. and not just for herself, but for so many around her, touching countless lives.
E’s been seeming farther away now. Not so much in her own world, as she’s been, but less of anywhere.
And we began our journey into hospice…
18 thoughts on “Moving Into Grace – With Hospice”
I am a friend of Denise Smyth and my name is Stephanie. I knew Philip from when he was born in Brooklyn until he was a few years old then we went separate ways. When Denise told me her son had passed I was struck dumb. How can this be, i thought, He was only 22.
And then I saw mention of Elizabeth Blue and so ventured into your beautiful portrait of a daughter also taken away at so young an age. What you have put together of Elizabeth from a toddler until her last days was nothing less then breathtaking. You managed to create a life that I felt I knew. She was an old soul that much I can see. She was blessed to have such a family and you such a daughter
Stephanie, thank you so much for coming to my blog and watching the video. I was definitely being “guided” as I made that slideshow, and I’m grateful that Elizabeth has touched you. She was an old soul, and we were blessed to have each other, absolutely! She continues to teach and inspire me still.
Disengaged? Nope, you are as connected as… I can feel your posts…a groundswell of energy.
It’s been quite some time since we’ve talked, but, like I said, it’s easy to feel connected to you. 🙂
Thank you. I love hearing this, grateful for your words. blessings,
Thank you so much for sharing Elizabeth’s and your journey with us. It helps me to understand Elizabeth’s feelings and perspectives. My son was killed and I wasn’t there to be with him (I’ll always feel guilty/sad/cheated that I wasn’t there), so I’m especially interested in Elizabeth’s thoughts.
This was a very beautiful and difficult post to read. It breaks my heart. Elizabeth was an amazing child.
Thank you so much for reading. I’m so sorry about your son, and that the way he died didn’t allow you the time to say your goodbyes while he was alive. I wonder if you feel that you can communicate with him now?
I am grateful that Elizabeth and I had that time to talk and prepare for both of us, and also that I still feel a strong connection, can feel her presence and know she can hear me…
I don’t feel any communication, although I do talk to him. My daughter has felt his presence and has had a few dreams that she believed to be communication from him. I would very much like to believe that there is another dimension/afterlife or anything, but I haven’t personally had any experiences to confirm this. But if my son’s soul exists somewhere and he has chosen to communicate with my daughter, then that gives me comfort.
I’m glad you find comfort in your daughter’s experiences. I have long believed that our soul, or consciousness, exists after we die, and my experiences since Elizabeth’s death have served to strengthen that. I had a reading with a medium who knew things that only Elizabeth and I knew to be significant, so that was very powerful. And the book Proof of Heaven was also a source of comfort to me. I recommend it if you haven’t read it.
I feel that the bereaved mothers, whose blogs I follow, have created “sacred spaces” with their blogs. Vic and I too shared a heart. I fluctuate between devastating sadness and feeling numb. Your Elizabeth was so beautiful. hugs xxx
I agree, many of those whose blogs I’ve found, yours included, have created a sacred space in the writing and images we share. We are so blessed to have had another whose heart we share, and at the same time it makes the apparent separation so much more devastating. I’m so sorry for the loss of your lovely daughter…love, Lucia
Lucia, you’ve taken my breath away. So much of what you’ve said, so touchingly, achingly beautiful. You know I’m crying right now; it’s my heart. Anything that moves it, hurts it, because it’s still broken. But it’s not that simple, not at all. The tears are coming from a deeply profound place, one that I’ve not yet found language for. But when I say that the other side of grief is deep joy, this is somehow part of what I mean. I say “part of” because my brain says, “Joy? With Philip gone? I think not.” Yet something else is stirring, something about these tears that’s different. It’s subtle, but it’s there, and Philip is saying, “Yes, mom; that’s what I’ve been trying to tell you.” You see, Lucia, Elizabeth is helping me, too.
Yes! I am so glad that Elizabeth is helping you too. That is what I hear too, the other side of grief is joy, and anything fully felt brings us to such a greater depth of our being. And your Philip is another amazing, wise soul, doing beautiful work from where he is, and neither of them could have been affecting so many, so profoundly if they were still here in body…blessings, Lucia
She does seem so peaceful and serene in the photos. It must be a great comfort to you.
Yes, she was quite peaceful, and I am so grateful that she moved so quickly into acceptance and peace. It was, and continues to be, a great comfort to me. blessings, Lucia
I feel so blessed to know you a little more through this journey. Elizabeth’s legacy is in you…and a little now is part of me, too. Thank you for sharing her.
Thank you Vonnie! I feel Elizabeth spreading her messages farther and wider, letting us all know how to live as fully as possible, with such grace.
thank you for allowing me to get a glimpse into this very sacred space. Karen
Karen, thank you for taking the time to see! blessings, Lucia