This is a story about my experience with my daughter, Dove, who was born with a terminal, genetic illness. We lived with her process of dying for eight years. Although this is a story about our surrender to this challenge, it is my belief that this story has relevance for all parents. For all of us, love and grief are commingled in the process of parenting, because we can't escape from pain and hard times in relationships with our children, nor can we protect them from it.
What have I come to know, after journeying for eight years down a road destined to end in death? I have learned that giving and receiving love can illuminate the heart to see the grace in any form. I believe at the deepest level of our being, even with all of our distortions, attachments, habits, and ego, we are still capable of seeing the divine essence I am calling grace. My life with Dove opened my eyes again and again to see the grace where previously I would have seen only tragedy.
...the glory of a sunrise, silver magenta billowing above the Flatirons, brilliant rainbow which takes my breath away. Obviously grace. The fullness of my life, spiritually, emotionally, mentally and physically for forty years. Obviously grace.
...being pregnant, with a loving husband, and living in the glory of Aspen, Colorado's natural beauty. Obviously grace!
And then, mysteriously, I was asked to graduate and enroll in a school of deepening perception, learning that in everything we see, not just in the obvious, there is grace. My daughter was coming, the perfect home birth designed. After eight hours of labor I was running out of gas, something was wrong. It was a clear choice. I had to let go of my picture and go with my truth. Get to the hospital. Four hours later, born by Cesarean, a fragile Dove Angela came out of my womb, still holding on to the thin veil between the worlds. Her heart filled her chest cavity, and they would soon decide whether or not to air-evac her to Denver. Her soul still to decide whether to make this journey with me. It seems the placenta had torn and her tiny body had been starving for weeks. Miraculously, her heart size decreased and her condition stabilized. Obviously grace.
She had been named after a mythical figure, the Goddess Dove, who proclaimed she would only return when the ability to love by the beings on Earth had evolved to a level of compassion to be able to embrace a being of her purity. My heart was ripped open. I sank into myself. My awe, my vulnerability, my love as I touched her tiny fingers through the incubator. The shock of almost losing her opened me wider than I had ever imagined possible, to feelings of undefined depth and awe. Dove Angela, Dan and I went home a week later. We spent the next eleven months joyously gaining in strength and connectedness to ourselves, each other and the divine.
Right before Dove's first birthday, on our way home from an idyllic Hawaiian vacation, we stopped at Children's Hospital in Denver to have a peculiar curve in Dove's spine looked at. The doctor called in a geneticist, who looked at that sweet round face and suspected something for which he did a urine test. Shortly thereafter he came to us and told us the news. Dove had a terminal genetic illness called Hurlers. She would die between the ages of two and ten. I remember the room beginning to fade as the colors melted like a watercolor painting. I remember the impulse to throw Dove's little body across the room and smash into the wall as I held on to her tighter than ever. I remember sobbing as I walked to the ladies room, the blackness and dread consuming me. I sank onto the toilet seat, certain I would never smile again, that no spark of joy would ever enter my body again, that grace was dead and that I wanted to be too. I sat and sobbed for maybe ten minutes when a voice inside me asked, "Look and see if you're okay". And in response I discovered an intact sense of myself, the quality of breath below my breathing, an awareness of being, surrounded by emotion. I walked back to Dove and was amazed to feel a spark of joy at her smile. This was the first door into a new awareness that it's all a form of grace.
The next two years became a kaleidoscope of researching, international networking, searching and praying for a cure. Dove was by now developmentally delayed but exquisitely happy. She drank in life and love. She knew no distinction between good and evil. I remember her little nose pressed up against the TV screen to kiss the evil sea witch in the Little Mermaid. I remember taking pictures and videos with the knowing I would treasure them dearly when she was gone, always wondering if these were the last set in which she would look pretty or even normal. I had actually read a description of Hurlers which had included the world "grotesque". In fact, by her 5th year I'm sure the world would have described her as different, while my heart cherished her beauty beyond belief. There was no future to plan for so I was released into the now, the strangest form of grace. There was nothing but the present, (and, of course, the also present fear of her impending death).
We moved to Boulder, close to Children's Hospital and a town with more resources for special needs kids. I had three miscarriages, more letting go. We adopted Bodhi Rebecca at birth. I cut the cord. Dove called her Becca and I called her Booboo. Grace breathed herself into our lives with some semblance of normalcy. I taught transpersonal psychology and had a therapy practice. Dove made friends at pre-school and so did I. I noticed I was no longer driven to find a cure for Dove's illness or for my pain. I saw her capacity to dance and even walk diminish. I noticed her vocabulary slipping slowly, word by word. She was getting younger as Bodhi was getting older. As I lay with her at nighttime on the futon before I put her in her crib, we would look adoringly into one another's eyes. I would sing, "And this old world just keeps on spinning round", and she would just say, "love, love". Dove would fall asleep and I would fall into the blackness of despair, the well of pain, the waves of feeling abandoned, falling, falling, allowing, surrendering into the grief of this precious, time-limited touch, until I would come to the centre, the still point from which all feelings emerge, the space before form, where grace still lived and always does.
The autumn before Dove's fourth birthday she was breathing poorly. Her airway was becoming narrower due to sulfate deposits. There was only one position she could sleep in without suffocating. Each night I kissed her cheek with the gentleness of unconditional love and gratitude of the gift of another day. I would say, "Call me if you need me", knowing if she did not, I could surely find her body without life in the morning. How I slept at all is a true testimony to grace. And how I would be dreaming and Dove would walk into my dream and my dream ego would wake me up saying that Dove needed me. Indeed, she was, inevitably needing, her diaper to be changed, her pajamas wet with perspiration, or her body uncomfortable in some way.
We finally put Dove on oxygen and made a Canadian oxygen tent out of garden plastic under her crib, with the oxygen pumped in. By the winter she was developing hydrocephaly, barely able to breath or sit up. She was still present, responding to us with smiles, laughs and loving embraces. Surrendered as I had become, I was still not ready to let her go, and neither was my husband, Dan. We chose to let the doctors operate, put in a shunt, and drain the fluid from her brain. We sat silently in the waiting room outside the operating room, meditating, connecting with her, offering of ourselves whatever energy, love, hope she might need to help her through. An hour later a doctor on the team came out and said they could not take the anaethesia tube out without causing her death, and would we okay a tracheotomy, or should they let her go? It was not hard for us to decide. We wanted Dove to have the choice to go or stay a while longer. They put in the trach. Although she had no words left before, now she had no voice except in my mind and my heart. This was the entrance to the next room in the house of grace.
Two weeks in intensive care and a week on the rehab floor. The quality of care showered on us by the surgeons, doctors, nurses, aides and the rehab staff daily nurtured my depleted source of energy. What was at first an overwhelming task slowly became routine. Oxygen tubes, suction machine, trach changes, air mister, feeding tubes, nebulizer. I tried to cherish every moment, alternating, however, between a state of numb exhaustion, weary of pain, and gratitude that Dove's spirit was still peeking through. I kept cycling through an emotional pattern of shutting down, then becoming enraged with a nurse, then allowing myself to feel the pain below the anger, which, through sobbing, melted the anger and opened my heart once more.
We brought Dove home as soon as I had learned to change her trach. She needed attending around the clock. We had RN's for a week and then we began the "Dove Team". I put ads in the newspapers and recruited 5, and later 8, (mostly) college and grad students, nurses in training and an ex-RN, to form a team of around the clock care. Our home became a beacon of light, with Dove as the love beam in the epicenter of activity. It would have been previously unimaginable that I could experience such grace. I called Dovie my straight shot to the source, with which I was reconnected every time I walked into the living room. "Dovie, Dovie", I would call out whenever I came in, to let her know I was there. We built a platform for her chaise. Dove now had her "throne" surrounded by medical equipment and stuffed animals. Everyone who joined the team was another jewel in the brilliant ring of heart energy in which we lived and recuperated. One more operation to put her tummy tube in, since she could no longer swallow without aspirating food into her lungs. Dovie regained her strength until she could sit up for 20 minutes and often waved and clapped her little cupped hands in joy. She was glad to still be here. The relationship was stripped to its pure essence, feeling each other heart to heart and being together, sharing the moment.
Because Dove's personality had no defenses and no resistance to loving or being loved, my heart was in a constant state of openness, giving and receiving love. She could no longer walk or stand and I noticed her sight was going. For a while she seemed disoriented, until she switched over to using her hearing and touch as her modes of interacting with the world. I was grateful she had been the "video queen" because I knew she had the pictures firmly imprinted in her mind as she listened intently without her vision. She especially loved the home movies in which she could hear herself still being able to sing and dance and interact with us. Our home was filled with kids' music and I often found myself singing and dancing around the house. Our home was filled with activity, care providers, homebound school teachers, physical therapists, speech therapists, even a massage therapist. Dove had a full life and her own sweet world. She was six years old. I think by now her mental age had regressed to about eighteen months. She had no emotional anguish about her limited abilities. She was in a state of peaceful being, indeed, a state of grace. Dan continued to do research and we tried many formulas of herbs, supplements, homeopathy and food combinations in her tummy tube. I think these did, in fact, increase the length of time that we got to be together. She often got colds and even pneumonia, but always her immune system rose to the occasion. For the next two years I deepened in the process of serving Dove. This purpose infused every day and every aspect of my life with my precious Bodhi, my practice, teaching and managing the team of care providers.
My dad died in the spring. I separated from Dan in the fall. I had one terminally ill child. Although I had my health and one beautifully exquisite and healthy child, I think I was probably near the top of the stress chart and my life certainly didn't look like the Father Knows Best future I had envisioned. Yet, through it all my connection with Dove fed me like a deep well and grace was the spring that sourced the well. The winter had been a hard one on Dovie's body. Cold, coughs, flues, in and out of stability. She began losing weight, although she was being fed the same amount. I consulted someone whose deep knowing I trusted, who told me Dovie was lightening the load, preparing for flight. My fears, which had faded, returned in waves of reaching out to docs and parents with other Hurlers kids. We took her in for an MRI when she had lost her ability to sit, and there was "no cause". I guess I must have know, but I had lived such a long time with the inevitable that I couldn't bring the reality, that we were close to saying good-bye to her precious physical form, to consciousness. It was the spring and some care providers were graduating from school, so I had put the usual ad on the job board and in the paper. For the past two and one-half years I had been graced with the best people. But this time only a couple of people called up and I knew on the phone they were not right. I wondered why. In retrospect I see that Dove had stopped calling her helpers.
Even the Friday morning of May 5th, 1995, when I heard how labored her breathing was, and kissed her with so many kisses. "Love you so much, love you so much", all over her face, I just thought we were in for a few days of pneumonia. It was two and one-half weeks before her eighth birthday. I called one of her doctors who came over and prescribed an antibiotic, although he said he didn't really think it was pneumonia. I went to class carrying my cellular phone, which had become my security blanket When I came home she was still breathing heavily. I called Dan at a seminar in Los Angeles and said I would keep him posted. I spend the afternoon in a quiet frenzy. Her homebound teacher came and read to her. I sent Bodhi to the park with a care provider. It began to creep in as I held Dove in my arms. I sand and cried and Dove breathed. I called the doc back and he came over and shook his head, "She could rally, but she might not make it through the night". "We're losing her", I though for the first time. And then she rallied for a few hours.
What happened next is the most difficult to do justice to with words. My precious Dove began to take flight. I felt a shift in her breathing. She began to breathe harder and harder, also using her mouth, which she rarely had done since she had the trach. She was gathering her energy up, up, up, from her toes slowly all the way up through her body and then out the top of her head. It felt like a labor, a birth of spirit. All the while I was saying, "Go, Dove, go, Dovie, it's okay baby, fly free. The angels are waiting to greet you. You'll be able to sing and dance again and run and play. It's ok to go. And I forgive you for anything you ever think you did wrong. And I know you forgive me. I'll always keep you in my heart. I love you, Dove. I love you so much. And thank you for being the perfection you are. Thank you for coming to me. Thank you. I love you. It's ok to go. I know you can do it. Don't be afraid. The light will guide you." As I held her on my lap, I could tell when she had left her body and she stood somewhere above, high on a bridge between here and there. I held my breath. And then she came back into her body for another minute. I looked into her eyes. I felt our forever union. I was totally present for her as she worked hard to breathe herself free. And once more she left her body. This time was the last. I looked at her still form and then felt this wave, current, of ecstatic energy run up through my body and I let out a scream of ecstasy which was Dove's scream. She was free and she was ecstatic. And I wanted to go with her. "Come back and meet me on the bridge when it's my turn" I whispered to her freed soul, and I know she will.
It was about 9:40 pm. Bodhi was asleep. Kaila, a loving care provider, lit candles. Shaina Nolls' Songs for the Inner Child was playing softly in the background. The house was filled with the grace of spirit set free from form. I took my baby girl up to my bedroom and ran a bath for us. I took out her trach. We bathed together. I washed her precious body. I dressed her in an angel nightgown she had worn last Christmas. And then I called some friends. They came over. We sang songs into the wee hours. And then I took Dove upstairs into bed with me and we slept for a couple of hours.
In the morning I made the ever many phone calls. I put Dove back on her throne and the people started to come. Waves of love and food and flowers. Children came by to pat Dovie and hand her a rose or whisper something in her ear and say good-bye. I had always though that I would cremate Dovie's body but when she died I realized that was not right for us. I wanted it to be more gentle. I wanted to keep her body in the house until it was time to go in the ground. I arranged with the mortuary for them to bring over a small white satin casket and some dry ice to put Dovie on. For the next three days she was never alone. We brought the casket up at night and brought it down in the morning. People came and went and there was a gentleness of spirit.
Waves of guilt began to come over me. I don't think there was any way to avoid this. I think of guilt as the difference between our humanness and our perfection. And so, like all moms, I thought I should be perfect, and I started to feel guilty about the ways I was human. Mostly I thought I hadn't held her enough. I knew I had provided well but there were many days when I would come and go, singing, hugging gently, but not sitting for hours holding and holding. And as I sank into this guilt, someone suggested I ask Dovie to help me with this. So I put my cheek against hers. She was lying on her throne, where she always was in the living room. "Dovie", I said, "help me with this guilt". Dove said to me, "Mom, can you feel the cells of your being in this stance, bent over me and touching cheek to cheek? Have we not done this day in and day out? How many hours and hours do you think that would have added up to? And you think I don't get your love? Your guilt demeans our love", she said to me. "I will be with you always. We are, as you know, merged 'potatoes' (our nickname) and now that you have devoted yourself and served me, you know how to serve God. This was your test. And now you've passed. I came to you so you could learn to serve. And now we can do the next step together."
This was the first of many clear teachings that Dove was to give me after her death. I was relieved that she was close enough that I could still count on her as the door to my deepest self. Monday afternoon we held the service. There were so many people in attendance that Dovie had touched, so many care providers and teachers and friends. She, in fact, had her own circle. She was her own little pebble, and as she dropped into the lake the ripples spread out and out. People showed up to share their stories and their love and their gratitude. I said, "I feel so honored, as many of you expressed your appreciation of my mothering and of my serving Dove. And I do take this in. But the bigger truth is that unlike any other relationship I have been in, serving Dove was receiving in greater measure. The grace of this exquisite being was in giving me the opportunity to feel what my heart feels like in this pure a relationship. And only if I can find a new source of devotion to God in the world will my loss be diminished". I also acknowledge Dan at the service for his ability and willingness to partner me so beautifully in caring for Dove; his tireless and constant search for what she needed at every moment to support her failing body. And so, we laid her little body to rest. I threw dirt onto the coffin, I threw dirt onto myself. I wanted to keep acknowledging our union.
I survived the next couple of months day by day, hour by hour. I created a project for myself to focus the grief. I sent out 175 thank you notes, acknowledging people for their contribution to our lives and to Dove. With each one I sat and focused on that person and felt how Dove's heart and my heart and their heart had joined. I often cried more than I wrote. But it kept me focused on my grief, for part of each day, which I needed to do. If a couple of days went by without my sinking into that space of grief and pain, I would find I had gotten so far away from myself that I started to feel shutdown and angry.
Dove continued to be so present for me. One night I asked her to come to me and at that moment I heard her voice singing, "Oh mommy, oh mommy, oh mommy divine, I love you immensely because you are mine". These were the words to a song that I used to make up verse after verse for Dove, long ago. I hadn't sung it in years and here she was singing it back to me, just to let me know she was still present.
Several months after Dovie had died, Bodhi and I went on a trip. I was feeling the loss of how easy the love with Dove was compared to the love for a healthy child with all of its power struggles and daily routines. And Dove came to me and said,
"You must not hold our love as unique. I came to you to teach you the way into your heart, where you and I are not separate, and yet not as a unique experience. You must not hold our love as unique. The place where you and I are not separate, that is the door I want you to use to know that you and Bodhi are not separate and ultimately that you are not separate from anyone".
On Dove's eighth birthday I received a birthday card for her from a family who did not yet know she had died. I had heard of this family seven years earlier. They had three children with Hurlers. Seven years ago I had been appalled at their reality and said to myself, "There but for the grace of God go I". As I read their birthday wishes I felt a sense of envy! To my amazement I had been transformed and would now say "There by the grace of God I would gladly go again". So it is that Dove has come again and again. Whenever I call her she is there. Whenever I am in the deepest part of my being she is there.
I built an altar, pictures of her, flowers, statue of the goddess, and the candle that I had lit the night that she died. It has been five months now and last week Bodhi came to me and said, "Mom, the candle on the altar blew out all by itself". I, of course, knew that meant she had blown it out, the candle which had been lit for five months. At that very moment I heard Dove's voice in my head and she said, "Mom, this is the time to be loving and gentle with Boo, not angry", as I could have done so easily, "because we need to show her that my light lives inside you as loving kindness and is not really there in some symbolic form on the altar."
It has been five months since Dovie has left. Some days are harder, some days are easier. Some days the love fills me with joy, and somedays the love fills me with grief. As long as I can keep knowing that the love is joy and grief, as long as I can continue to find the ecstasy in both the sorrow and the joy and remember that it's all a form of grace, I think I'll be okay.
I'll close with Dove's most recent message,
"Mom, you will find me in your deepest yearnings for God and in your dreams of fulfillment. You will also find me in the most frivolous thought and carefree moment. For I am your very Being, for always and always."
and the poem I wrote her in reply.
Dovie, my beloved
you are the door to my Self.
A treasure too bold
to be earned
too pure to be known.
To say I will never forget you
is promising I will remember to breathe.
And when I no longer
have a need for breath
we will meet on the bridge
and dance again into forever.
by Shana Stanbridge.
For more information about Hurler's disease and related disorders use these links to access an on-line booklet provided by the Canadian MPS society and pamphlets available for $5 from the NORD database on rare diseases.
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