Jane Hepburn’s daughter Alba was born still on 27th April 2012. She has been an amazing support to so many bereaved families in the Inverness area and has kindly allowed us to share a piece that she wrote a 2 years after Alba’s birth.

We all grieve in our own way, at our own pace, and we all take comfort in the things that make sense to us. It’s ok to grieve differently from other bereaved parents we know - we are all on our own unique grief journey.

“It’s ok to not fit in, I think…

I read a lot - poems, articles, blogs, whatever I find, by other bereaved parents. Sometimes I find things that I can relate to yet I still feel distanced from it all.

I found out the day before my due date at a routine appointment that my baby had died. I did not scream and shout, I was not a hysterical mess, I made the phone calls that needed to me made, I made the decisions that had to be made and I gave birth to my dead baby late that night.

Just before she was born I admit I was scared, scared of what she would look like, scared that I wouldn’t love her. But no, she was beautiful, my perfect baby girl, I held her straight away and my heart broke. The love for my newborn baby washing over me as I looked at her wee face, her hands and feet and saw her Daddy lovingly holding her. We stayed the night in the hospital with her, holding her and taking photos and the next afternoon we went home, without our baby. I have two older children so I needed to go home and see them, they were my priority right then.

In those early days it is so raw and you do wonder how you are going to carry on but you do and as every day that passes it does become a little easier. I felt guilty about being out and about, about going to things at the school somehow feeling it was expected of me to be hiding out at home in floods of tears.

I did cry and still do, sometimes completely uncontrollably but those moments are usually with my partner or on my own and are fewer and further between as time goes on. I never made a decision not to cry publicly, I just don’t. I do not see it as a sign of weakness or feel embarrassed getting emotional in front of people, I get so emotional at times but that does not lead to tears. I’m not in denial, I’m not ‘not allowing myself to grieve’ it’s just my way.

In the early days I could not begin to imagine why I would want to be in contact with other bereaved parents but in time I felt that it may be helpful to me and I went to some online pages and groups but found it so against what I felt. I have no religious beliefs and could not go a long with the notion that I would meet my baby again and the references to angel babies all playing together in some distant place made me uncomfortable, I felt so alone but almost like I should be doing these things that somehow I couldn’t possibly love my baby as much as all these other women so absorbed in their grief and creating this new better world for their babies to be until they met again. My baby was dead, we had her cremated and her ashes are in a box in our bedroom. Ok I understand that sounds harsh and I would love for something a bit nicer but that is truth and fact for me and I can’t pretend otherwise.

Alba’s leaf on the SiMBA Tree of Tranquillity in Inverness

I don’t know what to write when someone says it’s the anniversary of them losing their baby, I can’t send floaty kisses or wish them a Happy Angelversary. It brings such comfort to many and I wish I could go along with it but it just doesn’t work for me. When I first heard the term rainbow baby I’m pretty sure I would have screwed up my face but when I read an explanation behind it I thought it was truly beautiful, but, yes there is always a but, I am very uncomfortable with the need to label a living child based on whether or not they were born before or after their dead sibling.

It will be 3 years soon and I still don’t really feel like I fit in. I’ve met people who do not want to talk about their baby, who find it easier to just try to cope by not discussing it, by even trying not to think about what they have gone through, I get that. I’ve met people who gush about their angel babies, who find comfort in ‘signs’ from their babies in so many forms, I get that. I think whatever anyone needs to do to get them through is 100% ok.

So why after saying that do I still sometimes doubt the way I get through? I want to talk about my daughter, I want to tell you all about her, she is such a huge part of my life as are my other 3 children but I don’t feel we are quite at that stage of discussing dead babies. Sadly that is what she is. My baby died, I’m never going to forget that, I’m never going to get over that, I’m never going to stop speaking about her to prevent others from feeling uncomfortable. My baby died, it hurts, I miss her but it’s happened and I wouldn’t be where I was now if it hadn’t and I’m not ashamed to say I’m happy just now.

I have 3 wonderful living children. What I have gone through has made me a better mother, a better person in fact. She’s left me with an appreciation for the small things I once took for granted, I have a new found love of butterflies which is not to do with me thinking of them as a sign, it’s just one of the many things I was too busy to notice before. The requests from my children that were previously met with Mummy is too busy are more often met with ok, let’s do it. My house is messier, I’m less organised, I allow myself the bad days and don’t feel guilty about getting on with my life.

All four of my children make me who I am today and it would not be fair on anyone to let the sadness, guilt, anger and disappointment of losing our baby always outweigh the joy that life and my other children bring.”

~ Jane, Alba’s Mum

Dr Donald Macaskill joined Scottish Care in 2016 as their Chief Executive. The organisation is a membership service which represents over 400 organisations, almost 900 individual services, delivering residential care, nursing care, day care, care at home and housing support services. Scottish Care is the representative body for independent social care services in Scotland.

Dr Macaskill has a PhD in psychology and sociology, is a specialist in palliative care and bereavement, and used to run his own equality and human rights consultancy. He has spoken eloquently during the pandemic about the impact of COVID-19 on the Care Sector and advocates passionately for the needs of residents and staff alike.

We are so honoured that Dr Macaskill has taken time during his every busy schedule to send us this poignant Guest Post for our blog.

Grandmother’s Wisdom

My grandmother was a story-teller in the best Gaelic tradition, weaving fact and fable, fiction and truth, as she sat in front of a warming peat-fire. Whenever I think of her I picture a diminutive woman with white hair gathered into a tight bun, dark apron covered in flour from baking and the dust of domesticity, and a warm glint in her tired blue eyes. She rarely raised her voice above a whisper but with gentle strength painted pictures of the imagination which took the listener on a journey beyond the now, yet which rooted you into the reality of the moment. The older I get the more I realise that everything I now know about life was told to me as I sat listening decades ago in a Skye croft house to the tales she spun as she knitted my future from her own heart. For my grandmother living a life was about discovering what your own story was and what words you would leave for others to hear. She it was who taught me that the dead and the dying, the bereaved and the grieving, have more to tell us of the fullness of life than we are often prepared to see or willing to be open to recognise.

The paths which have brought me to where I am today have been many and varied. I was never ever likely to be the sort of person who would stay in the one job from beginning of working life to end of career. Maybe it is the contrarian in me, the inability to settle or the desire to search for the new. I have studied philosophy and theology and have a doctorate in sociology, history and psychology. I have taught in settings as diverse as university lecture theatres to prisons, have spoken in small village halls and in large conference venues. I have worked in hospitals and hospice, managed teams and worked alone. I ran a human rights consultancy for over a decade and was privileged to learn the stories of those discriminated against and to grow under the wisdom of those who have literally had to fight for justice and equality.

Throughout it all I have held a life-long passion and interest in death, dying and bereavement. In particular I have been concerned with the death of the very young and of children, and with those who have profound and multiple learning disabilities. Undeniably I have learnt from those who are grieving more wisdom than I will ever be able to share, and most importantly have learned the power and necessity of silence, and yet also the challenge and call to speak out.

Today I am the CEO of Scottish Care, the national body representing independent care providers. Independent in this context means not run by the State, so charitable, voluntary and private. Our 450 plus members deliver nearly 1000 services across Scotland mainly to Scotland’s older people in care homes and in the community. I hardly need say that the effects of Covid19 have been devastating on the care sector especially in care homes. It has been an exhausting period and one which has thrust me into a level of profile which sits uneasily with my personality. For me it has been a time of witnessing real harrowing emptiness and sadness, yet also one of immense humanity and outright heroism.

Lockdown has been difficult for many of us. For those who have been grieving the loss of contact with places of remembrance, the inability to visit graves, to be able to engage in the normality of routine and the rhythms of the seasons has been very hard indeed.

I have been asked to write something about grief and bereavement and share any insights I might have. I hesitate to do so but will instead recount two experiences from my own life and if there is anything that is insightful in them then I leave you to take it.

The first death I ever experienced as a ‘professional’ was of a baby called Sarah born in a Glasgow maternity hospital in the early 1980s. I was part of the counselling team and on my first placement from university. I was ridiculously young and thought that giving comfort came from gabbling words of platitude and assurance. I had yet to learn the gift of silence. Jane was on her own having been left a few days after she told her boyfriend that she was pregnant. Her aloneness was not just the absence of others in her life but an inner emptiness which you could see in her eyes. She was living in a council house, aged 19, and she was struggling. Struggling with her many demons and the sense of aloneness which she felt, struggling with her addictions carved into her life by years of hurt at the hands of a violent father and a disinterested mother. She had been abandoned by family and friends, spending days sitting alone in an empty flat and hoping. She wanted to be a good mother more than anything else. The hopes of a new life were all caught up with the baby in her womb.

I got to know her in the hours after she came to hospital as an emergency admission with her baby at 32 weeks. Maybe it was an age thing, but we hit it off, and I sat listening as consultants and nurses talked over her about what they needed to do. She had started to bleed, and at the time it struck me that no-one really knew why or what to do. A decision was made, and a caesarean was decided upon. She was asked if she wanted anyone there and she asked me. I said yes. It was my first birth and I simply didn’t know what to do, say or think, other than to hold her hand. The birth was quick. The time after punctured by rapidity of action, hushed words and anxious faces. Something was wrong. Little Sarah was taken to ITU.

I will never forget the next few hours as it became clear she would not survive. Jane was devastated. When Sarah died she was wrapped and brought to her mum. All her hope had died. I was expecting her to be distraught, traumatised, inconsolable. What I saw was a strength I have never seen before nor since. In tears she looked at me and I remember her words to this day: “Today I am going to cry but tomorrow I am going to start living my dream; I will never forget what Sarah has given me today.” And she never did.

My next story is much more recent.

During Covid19 I have received many emails and messages on social media from complete strangers. They have shared so much about the care work they do, about the pain of being unable to see and be with families, about the desire to reconnect and meet up again with residents in care homes locked away from the virus and from living.

One of these messages came from the wife of one of the residents in a care home. It was an astonishingly moving and heartfelt letter. Her words grabbed at my soul and I have quoted them elsewhere. In talking about being allowed to be with her husband as he died, she said:

“I was initially very frightened about the virus, but I wanted to be with John. The staff supported me so much and made sure I was wearing the right protection … I know it was not ideal … but I was at least there … I am so grateful for them … even though I was wearing gloves I held his hand as he passed … that was so important … I felt the touch of his heart through my fingers.”

In the weeks since I have received that letter and in communication since her words ‘I felt the touch of his heart through my fingers.’ continue to haunt and live with me.

I have always been a very tactile person. For me touch is so important. It grounds me in the physical, it solidifies experience, it encapsulates things. So it is that touch is something I have instinctively used to reassure, to bring comfort, to try to soothe and to hold.

Covid 19 has turned the world upside down and as it comes to settle I do wonder if we will land and face a new direction. A new re-orientation where the stories of those who grieve, the voices of those who mourn, the experience of those who are dying are allowed finally to be heard and to speak truth to power. The optimist in me hopes this pandemic will be seen as a just such a new start, as a re-focus of who we are not just at an individual level but as a whole society.

Over the last year and a half, I have had the privilege to chair a group of people who have brought together Scotland’s National Charter for Bereavement for Adults and Children. Although its publication has been rushed forward due to the Covid19 pandemic the work on it has been careful and cautious, respectful of diverse views and opinions. Its primary purpose is to try to create a Scotland where death and dying becomes the business of all, the concern of communities, and the obligation of business, politics, leaders and people.

I do have a dream which I suspect I share with many involved with Anam Cara Fasgadh that folks will no longer need to cross the road to avoid those of us who are raw with grief; that there will be spaces and places in our busyness when we allow people time to reflect and simply to be; that we can as a community cradle the bereaved and give solace to those who need comfort. If that does become the legacy of these times, then the wisdom of my grandmother will have come true, that those who have died and are dying speak more to us about life and love than any truth I know.

Donald Macaskill

donald.macaskill@scottishcare.org

Twitter: @DrDMacaskill