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Issue 8
The Visit
A brief life, an eternal love
By Franca Westaway
It is four years since Roisin, my first child, lived and died. Her brief visit has enriched and transformed my life in innumerable ways. She was born with Edward's Syndrome, a condition I had not heard of until twelve hours after her birth. When the doctors gave this diagnosis they predicted she would live no more than 48 hours. A quarter of her heart was missing, an inoperable malformation, and there were other systemic problems. She may not have been able to feed or process and pass waste. There were cataracts in her eyes and one of her ears was not really an ear at all, more a frill of skin. They did not know if she could see or hear. She did not appear to be brain damaged.
I could not believe how beautiful she was, lying in the perspex box, hooked up to wires and tubes, wearing a little knitted hat for warmth. This strange creature had emerged from my body and clung onto a tenuous thread of life. She was calm and quiet and very present. I stroked her face and held her hand through the small opening in the incubator. The following day I was able to briefly bring her out into my arms.
The pregnancy for me had been turbulent. The relationship I was in was very new. When the two pink lines appeared her father was at a loss. We parted acrimoniously twelve weeks later. I was temporarily homeless, staying with a stalwart friend. The midwives were nervous about my desire for a home birth. I felt unsettled and guarded a lot of the time. I had a vision of myself as a she-wolf, hackles raised and teeth bared, protecting my corner. Then at the twenty week scan a problem with her right arm was seen, it appeared deformed in some way. A report soon after stated that this abnormality could indicate a wider chromosomal disorder. I wept for the normal baby that I would not have. My choice not to have further tests was based on the knowing that I would not and could not terminate this pregnancy. I was already completely attached to my child and thought that I could face whatever lay ahead. Through this external turmoil I felt the presence of this little life within, always calm, strong and somehow reassuring.
The sense of her reassuring me was magnified after Roisin's birth. She could see. I could tell by the way she met my gaze when, on the third day, she opened her eyes. "I'm still here", she seemed to say. After almost dying the evening before she had rallied amazingly and come out of the incubator. In the little family room on the Special Care Baby Unit, I took her from the cot when the nurse left and we slept next to each other for the first time. She continued to live and on the fifth day I brought her home. When the doctor first suggested I do so I was aghast, how would I deal with a dead baby? I let the idea sink in and decided that I would just have to take each moment as it arose. Her death was inevitable, imminent even, but she was my daughter and my love for her was already all-consuming. At home I waited for her to die. I held her fragile form in my arms. My mother had come to be with us and she held me. I wanted my Mum so much in those weeks. I had become a mother myself and was feeling more childlike than I had for many years.
Days passed. Weeks passed. I eventually stopped asking the doctor when she might die and slowly accepted that she lived. We had been given time together, such precious time. Roisin's gentle presence seemed to imbue me with courage and strength. Others were similarly moved by her powerful aura. She seemed purposeful and at one with herself. It was a great help that she was generally very comfortable and did not need interventions or pain relief. In fact, she was a delight to be with. I took her everywhere. I wanted her to meet everyone around me, and them her. She felt the sun and the wind and the rain. She saw the sea and frosty mornings. We travelled to visit friends in the city from our little rural home. I wanted to show her the world. But there was also a fiery defiance in me, I wanted everyone to behold her, and me, and to really see us without averting their gaze.
Roisin lived for three months. The day she died I knew that she was more poorly than usual. I phoned the hospital and spoke to the paediatrician. Her breath was laboured and rattling. It was decided that I would take her in for the doctor to see if anything could be done to ease her symptoms. A friend came over and we got ready to go. I put Roisin into her car seat and as I did so I said 'I hope she doesn't die in this'. It was in that moment that I realised that she was dying.
The journey took twenty minutes. I held her in my arms and as I watched the road I felt the breath slip out of her. When we arrived at the hospital she was dead. In the Special Care Baby Unit we sat in the quiet room. I took the little feeding tube out of her nose and the tears poured from me. The doctor confirmed the death. I had been waiting for this moment for thirteen weeks and I was clear about what would happen next. I took her home with me.
There is no legal obligation for a person's body to be left in the mortuary at a hospital or with a Funeral Director. I had been planning Roisin's funeral since I first took her home. A friend gave me a Natural Nurturing Network newsletter. In it there was an article written by a mother who had laid out her little boy at home after his death at ten weeks old. As soon as I read that I knew it was what I would do myself. I could not imagine leaving her in a fridge in a distant building and going home alone. I felt that as her mother I wanted and needed to tend to her between her death and the funeral. I felt no-one else had the right to undertake these final caring acts. I am so thankful to that other mother for sharing her experience as it gave me the courage, strength and permission to do what I needed to do. It also gave me the space and time to face the physicality of Roisin's death, to truly say goodbye.
At home I bathed myself. Alone in the water I felt my whole being split apart and a huge, dark chasm open up at my core. The sounds that rose out of that place were primal and I let them come. I washed her beautiful lifeless body, surrounded by candles, and then laid her on silk in her moses basket. I drank champagne to mark the moment and to celebrate her. That night I slept with her beside me, in my arms, for the last time and it felt natural and right and proper. The following morning I laid her out in my little spare room, creating a shrine. I put my drawings of her and from the pregnancy on the walls, her few toys, clothes my mother knitted for her, crystals, flowers, stars and love all around her. Friends came to visit and say their farewells, some alone, some with their children. All told me how beautiful and sad and uplifting it was to do this intimate and traditional thing. The children drew wonderful pictures of her at rest and many of them still speak to me about her now. This in itself has been a hugely healing part of the whole experience. I feel that the laying out, in time-honoured fashion, really began my process of coming to terms with Roisin's death.
In it's early stages my grief was a very physical thing. I ached to be with my baby. Every cell in me seemed to cry out at her absence. A strong awareness of our spiritual connection rose in me, I sensed her presence almost constantly. I felt I could communicate with her whenever I wanted to and was comforted by this. But I could not deal with the fact that her little body now lay in a little box under the earth. I wanted her in my arms. I would have given anything just to be able to see, hear, smell, touch and hold her. Even when you know your child will die, nothing can prepare you for the endless enormity of their absence. The first days and weeks after her death truly were the 'dark night' of my soul. I sat alone in my house, sobbing. I was in deeper pain than I ever imagined possible and could see no end or respite to the anguish.
I felt so sorry for myself. I wanted to know why me? I read somewhere that in some eastern philosophies the death of a baby is seen as the ultimate expression of blocked creativity. Bringing forth a child is the most fundamental of human acts of creation, the baby's death is a demonstration of that process being thwarted, not reaching full fruition. This rang a deep chord within me and I spoke of it to a friend. She produced the book The Artist's Way and suggested I might like to try some of the tasks it detailed.
I began doing the 'morning pages', writing daily about whatever came to me. This journal became invaluable to me as all of my pain and confusion and anger poured out onto its pages. The rawness of those early words is still difficult for me to face, but as the days slowly passed I moved past the initial pain and went deeper into what had happened. I started to see Roisin's death in the context of my whole life experience to that point, and to explore other ways it had affected me. It was like moving through layers, drawing aside curtain after curtain to reveal what lies beneath.
I was also drawing. I sat down one day and began doodling. A weird and intricate picture sprang onto the page within minutes. When I write or draw in a purposeful, self-generated way there is always the awareness of the thing in my mind's eye before it emerges. This process was different and a little startling. More pictures and writings came to me, all of which I found nurturing and cathartic. I felt the enormous healing that this process was bringing to me. It was as if others had come to wash and salve my wounds. I was gently held by this loving kindness and gave thanks for it.
I wanted to speak of what I was experiencing to someone but I was very nervous of doing so. I felt certain that if I did others would think that I had lost my baby and now I had lost my mind. I wondered about that myself. Was I going mad?
At my request my GP referred me to the local Mental Health Team. Noreen Watson, a wonderful, down-to-earth Scottish woman and Community Psychiatric Nurse, became my support worker. I saw her at least once a week for counselling. At first I found it really hard to release my emotions. All of my crying was done alone, in private. I felt it wasn't really on to be in a 'state' when I was with others, they didn't want to deal with all my messy feelings. Noreen said 'you can be, do and say anything you want to'. I remember her saying to me 'My god, woman, your daughter's just died!' with huge compassion and empathy. She showed me that this was catastrophic, probably the biggest, widest, deepest trauma one could ever have. She was, I felt, adamant that I go through the experience just exactly how I needed to. She, like the mother who wrote about her own loss, gave me permission to be me, grieving the death of my child. Her words, my mantra, stay with me. 'You can be, do and say anything you want to'. I cannot thank her enough.
So I spoke to Noreen of my writings, the given words. I shared some of them with her. I showed her the pictures. There is a strong spiritual element in both and it was this that I felt most unsure about revealing to others. Noreen handled it, she did not think I was going crazy. Encouraged, I also shared these things with others, my mother and one or two close friends. Each time I did so I was not greeted with ridicule but with acceptance. Regardless of where this work may have been coming from they all recognised and spoke to me of the gentle and uplifting nature of it. For nearly eighteen months I wrote practically every day and produced a series of colourful drawings. I came to feel that perhaps this material came from an outside source, spirit guides, angels, or perhaps it came from another part of myself. It did not matter. What mattered was that it was healing me, and God knows I needed that. And eventually, I came to understand that where there is all consuming pain there is also endless love and that where there is devastation there is also regeneration and growth.
Roisin was and is a shining light in my life. She lives in my heart and in the hearts of many others. I shall continue to miss her body beside mine until the day I die. She opened me up and showed me how to give and receive love, without restraint. I am now married to Ian, a kind and wonderful man and we have a beautiful, healthy eight month-old daughter, Bina. I still do shed tears and this pain is, I know, now an integral part of me. But I am also softened, know peace and am happier than I have ever been. Roisin's visit was indeed a blessing. P
For Roisin 7.10.01 - 6.01.02
and for all of my family and friends.
Franca now works as a freelance writer and lives in North Devon with Ian and Bina.
Books
The Natural Death Handbook edited by Stephanie Weinrisch and Josefine Speyer, Rider Books, £12.99
Living with Death and Dying by Elisabeth Kubler-Ross, Souvenir Press, £10.99
The Tibetan Book of Living and Dying by Sogyal Rinpoche, Rider Books, £10.99
Organisations
SOFT UK Support for families affected by Patau's Syndrome (Trisomy 13), Edward's Syndrome (Trisomy 18) and related disorders.
0121 351 3122 (24-hour helpline)
www.soft.org.uk
Stillbirth and Neonatal Death Society
020 7436 7940 & 020 7436 5881 (helpline)
The Child Bereavement Trust
01494 446 648 & 0845 357 1000 (helpline)
www.childbereavement.org.uk
CRUSE Bereavement Care
0870 167 1677 (helpline)
www.crusebereavementcare.org.uk
The Natural Death Centre
020 7359 8391
www.naturaldeath.org.uk
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