It's Ok To Not Fit In

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.

Jane with Alba

“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

Guest Blog ~ Dr Donald Macaskill ~ Grandmother's Wisdom

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

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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.

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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.

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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

Guest Post ~ Love in Grief by Onie Tibbitt

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Though Onie Tibbitt’s background is in Environmental Education, Conservation Science and Zoology, she has been a celebrant since 2013. Onie travels the length and breadth of the country conducting weddings, funerals, baby namings, and family celebration ceremonies and passionately believes that families should be able to decide how and where they choose to mark the momentous occasions in their lives, however big or small, religious or secular, traditional or unconventional. She is also co-founder of KnotStressed Therapies in Edinburgh, providing therapies, training and workshops.

Onie is currently writing a series of eco-fiction books and eco-games for children, which we hope to be able to place in our respite caravan.

We are so thrilled that she has written this special Guest Post for our blog.

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“Great losses will always be with us, shaping us, sculpting our view of the world, touching on all that we do. Every one of us will experience the anguish, heartache and trauma of death in our own way - whether we have personally lost a loved one close to our hearts, witnessed the death of someone we know, or felt the impact of death on those we care about. There is no rule book for grief. ”
— Onie Tibbett
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For the past 15 years, through my work at KnotStressed Therapies, I have supported pregnant women and their families through pregnancy, birth and the postnatal period. It is work I cherish and find incredibly rewarding. However, working with life - helping couples to feel calm and confident during pregnancy and for the birth of their baby - inevitably means also confronting death. Over the years, I have worked with families who have tragically experienced recurrent miscarriage, the stillbirth of their baby, or the sudden and unexpected loss of a loved one. There are no words for the suffering that these families have endured. At times, when I was fairly new to this work, I seriously considered moving away from birth work. I felt utterly powerless to ease the pain these families were experiencing in any meaningful way. I doubted my own abilities and wondered what, if any, comfort I could possibly offer other families going through similar unimaginably challenging times.

I became a Life Celebrant, in part, because I felt compelled to find ways to help others facing the confusion, anxiety and anger that often accompanies death. I also became a Life Celebrant to search for meaning in death. By offering support to bereaved individuals and families, I hoped to make peace with my own mother’s early death from cancer, to come to terms with the death of my 17 year old school friend in a car crash, to better comprehend the deaths of my grandfather, father and aunt. As a society, we are getting better at talking about death, at being open about the cascade of feelings that can overwhelm a person who has either been forced to confront their own mortality or who has experienced the loss of someone close to them. It is not an easy task but there is great comfort in the sharing of experiences, the normalising of the harsh reality of death - it is after all a natural part of the cycle of life. How we, as humans, cope with these transitions, how we support each other through them is so important. Coming to terms with death is enormously challenging and everyone will find their own ways to cope with the devastating impacts of loss.The work of charities such as Anam Cara Fasgadh is incredibly important in raising awareness of these issues and providing a space for bereaved families to come together in grief.

My roles as a Life Celebrant, Pregnancy & Postnatal Massage Therapist, and a Birth Worker go hand in hand. It is an enormous privilege to support families through life transitions, especially those life transitions that can shake the foundations of a person’s world, unroot their sense of self, and challenge their ability to cope. At times, as a therapist, my role is to simply to listen, to acknowledge their feelings, to provide a safe space for any emotional release that is needed. At other times, perhaps during a massage, it is to help bring some grounding and calmness, to begin the process of enabling the bereaved person to take some time for themselves for rest, sleep and self-nurture. For families who have experienced great loss, planning a funeral can feel like a momentous challenge - just one more trial to get through. As a Life Celebrant, I seek to ease that process. I help families to find the right words to come to terms with their loss and to honour their loved one in their own unique and personal way.

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It can take years, decades even, to get to the point where we might consider in our hearts that we have made some kind of peace with the death of our loved one. Despite this, it is always incredible to me seeing how bereaved individuals will often pour their grief into something beautiful and inspiring - whether it is supporting others, running marathons, writing, painting, climbing mountains, music, walking in nature, or singing. It brings to mind an insightful quote by the ecologist and writer, Robin Wall Kimmerer: “I think about grief as a measure of our love, that grief compels us to do something, to love more.” I couldn’t agree more. However hopeless and insurmountable it may feel at the time, I truly believe that the best antidote to death is the continuing and whole-hearted affirmation of life. By finding ways to channel our grief into love, to look outwards and onwards, to help carry each other through the dark times, to find ways to self-nourish and be kind to ourselves and others, to live fully… then we can at least hope to find some workable understanding with our grief as we continue to journey through life. Thank you so much for inviting me to write a guest blog on your site. I hope that these words of reflection will bring some comfort, or may be of interest, to the families reading.

Guest Post by Onie Tibbitt, Life Celebrant and Co-Founder of Agnostic Scotland, and Co-Director of KnotStressed Therapies

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Onie’s Celebrant website: https://onietibbitt.com/

Follow Onie on Twitter: https://twitter.com/onietibbitt

Follow Onie on Instagram: https://www.instagram.com/edinburghcelebrant

Find out more about Agnostic Scotland: https://agnosticscotland.org/

Find out more about KnotStressed Therapies: https://knotstressed.com/

Guest Post ~ Marc Harder, Project Lead National Care Bereavement Pathway

Marc Harder is the Lead for the National Care Bereavement Pathway and is passionate about his work and the difference it is making for families around the UK. We are delighted that he is contributing to the Anam Cara Fasgadh Blog. He is also the ultimate Marathon Man, a true inspiration, running 15 Marathons in 15 months, working incredibly hard to raise funds and awareness for Sands. You can follow Marc’s own blog. Fifteen to One, by clicking HERE. If you are a runner he has some brilliant tips! He has raised over £3,000 for Sands and if you can spare some pennies please do consider donating here ~ https://www.justgiving.com/fundraising/marc-harder4

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Hi there - my name is Marc and I’m the UK Project Lead for the National Bereavement Care Pathway for pregnancy loss and the death of a baby (NBCP for short). I am based at Sands UK and even before the pandemic set in, I had been working from home in Hampshire for the past three years in this role. I travel extensively with the role, at least I did so until March of this year! I love getting out and about, meeting parents and professionals alike, running training workshops and networking events, or reporting back to the All-Party Parliamentary Group on Baby Loss in Westminster. I have continued to work during the pandemic and along with other members of the team we are refocusing our efforts to support healthcare professionals as much as we can during this time, in order to help them care as well as they can for families, and for themselves.

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At home, I live with my wife Jayne and our three children aged 10-16. Whilst we are not bereaved parents ourselves we have shared the pain of close friends and family whose baby has died, and one of our very best friends died after giving birth shortly before we had the third of our children. I’m involved in local community activities, be that as a school governor, member of a local church, or Parkrun director, and am often found running through the local woods and fields training for marathons. I am halfway through a challenge to run fifteen marathons in fifteen months to raise money for Sands, though it’s on pause for a while during the pandemic.  

Before joining Sands I worked as a project manager for an international market research organisation, then in Local Authorities for many years, mostly in Children’s Services / Education, working with partners to improve outcomes for families through collaboration.

I’ve continued that ethos in my current role. Although based at Sands I lead a project which is by its nature a collaboration. It was established with the aim of improving the quality of, and consistency in bereavement care provided to mothers and families after pregnancy loss or the death of a baby. This covers five experiences of loss: miscarriage, termination for fetal anomaly, stillbirth, neonatal death or sudden unexpected death in infancy. There’s some really excellent bereavement care provided by healthcare professionals but parents tell us that it’s not always consistent from site to site, team to team, shift to shift. So we want to ensure that the excellent bereavement care that is out there is shared widely and is provided every time to every person. The project advisory boards are made up of baby loss charities, royal colleges and other professional organisations. In England the project has the support of the Department of Health and Social Care, and in Scotland, the Scottish Government.

We know that pregnancy loss and baby death is an absolute tragedy for parents - excellent bereavement care cannot fix it of course but can help to mitigate the effects of such a trauma, and can set parents on the most appropriate pathway for them. So the pathway has been developed by parents as part of our parent advisory group; they’ve helped to develop us every step along the way.

The pathway guidance and resources were piloted in England in 11 hospital sites, and then a further 21 came on board in 2018. An independent evaluation highlighted the improvements and impact the pathway had helped to make, and as such the roll-out programme began - a further 34 hospital Trusts have come on board, so that’s now about 50% of England trusts which are on board. We have also recently launched in Scotland, with 5 NHS Health Boards starting as Early Adopters in March of this year.

The pathways are centred around nine core bereavement care standards:

 1. The preferences of all bereaved families are sought and all bereaved parents are offered informed choices about decisions relating to their care and the care of their babies.

2.  All bereaved parents are offered opportunities to make memories.

3. Bereavement rooms are available and accessible in all hospitals.

4. Bereavement care training is offered to staff who come into contact with bereaved parents, and staff are supported to access this training.

5. There is a bereavement lead in every healthcare setting where a pregnancy or baby loss may occur.

6. Healthcare staff are provided with, and can access, support and resources to deliver high quality bereavement care. 

7. A parent-led bereavement care plan is in place for all families, providing continuity between settings and into any subsequent pregnancies.

8. All bereaved parents are informed about and, if requested, referred for emotional support and for specialist mental health support when needed.

9. A system is in place to clearly signal to all health care professionals and staff that a parent has experienced bereavement to enable continuity of care.

These will look slightly different in each country of the UK, or from Trust to Trust depending on how they are configured and the services they provide, but we believe these standards should be promoted and met in each trust or board, regardless of the type of loss. The CQC in England, for example, is looking very closely at bereavement care standards as part of its Maternity Services inspection framework.

Clearly COVID-19 is having an impact on bereavement care across the UK. Social distancing, restricted NHS resources and potential staff redeployment are having varying degrees of impact on the ability of Trusts and Boards to deliver the nine bereavement care standards. We expect that bereavement care in maternity and neonatal services will vary over coming months but we still encourage healthcare professionals to provide a minimum level of bereavement care to families:

  1.  Compassionate care

·         A supportive family-centred approach

·         Acknowledgement of their loss and of individual responses to grief and trauma

·         Recognition of parenthood and the opportunity to make memories with their baby

2. Excellent communication

·         Empathetic communication

·         Informed choice about birth options and options after death

·         A robust review using the Perinatal Mortality Review Tool and with parental engagement

·         Signposting on to physical, practical and psychological support

3. Trained and supported staff

·         NBCP materials and Sands learning resources shared with  staff

·         Psychological support for staff

Sands has always been the voice of bereaved parents. We push for change at the national level by telling policymakers and service providers about parents’ experiences on the ground, and working with them to improve care.  The coronavirus pandemic has affected all health services, including health care during and after pregnancy. It’s vital that we tell service providers about the impacts of changes as quickly as possible, and work with them urgently to find ways to avoid unintended harm.  

Since March, we have been gathering feedback from families about their maternity, neonatal and postnatal experiences. Picking out key themes from what we hear, we are sharing those messages with relevant national bodies, including the Royal Colleges and the NHS.  

We have already highlighted some key issues, including: 

  • Concerns about perinatal post mortem services  

  • Ensuring appropriate guidance at this time, about monitoring during pregnancy to identify babies at risk  

  • Asking for minimum standards for bereavement care while services remain stretched 

  • Highlighting parents’ anxieties in a pregnancy following a loss 

  • Stressing the need for hospitals to continue to report deaths and maintain information to inform perinatal mortality reviews 

We are very pleased that so far, all our approaches to national bodies to raise issues of concern have been welcomed, and the responses have been swift and constructive. 

We would encourage families at this time to ask their healthcare professionals for support and help in accessing bereavement care and longer-term support; they should know who to point you towards. The NBCP websites in England www.nbcpathway.org.uk and in Scotland www.nbcpscotland.org.uk have plenty of signposts to charities and others who are able to support. We are trying to collate the information we have together in one place on the Sands website https://www.sands.org.uk/sands-here-support-you, though we are mindful that things are changing regularly as restrictions are gradually lifted.

Sands has support groups all over the UK and although currently, they are predominantly meeting through Zoom, MS Teams or other technologies, a warm welcome awaits.  

If you’d like to find out more about the NBCP, follow @sandsinsights or @marcharder on Twitter, or get in touch with us via the contact form on the website.

The Grief Guru

Our Co-Founder Susan ‘met’ Kelli Nielson recently at an online training course ~ Kelli is the author of “You’re Not Crazy, You’re Grieving”, and is, in her own words, “Dedicated to helping people get Unstuck and live a life of meaning and purpose”.

Susan was so touched by her story and all that Kelli achieves, she wanted to share her story with the community here at Anam Cara Fasgadh.

Kelli’s son Quintin tragically died from an accidental overdose on July 8th 2018 ~ he was 20 year’s old.

Kelli refused to let Quintin’s death be in vain and in the days after his death she asked God for Quintin's death to positively impact and change 300,000 lives in the days after his passing. Out of this determination to save the lives of others Qs Army evolved. Kelli speaks to people in recovery, to other families who have experienced loss, and to community leaders about this international epidemic. Kelli shared that Q’s Army exists “To be the voice of change. On behalf of those we’ve lost to addiction, on behalf of those who are still living but are trapped in addiction and on behalf of all the families that love them! “

Kelli, as The Grief Guru, offers coaching for groups and individuals and consultancy and has a myriad of useful resources to guide families through their grief.

Find out more at ~

Website: www.thegriefguru.com

FB Page: https://www.facebook.com/thegriefguru

Best Selling Amazon Book: You're Not Crazy, You're Grieving Click Here

You Tube Channel: You Tube

Guest Post ~ Rest With Joseph and Friends

Today Anam Cara Fasgadh are delighted to welcome Darren and Kay Collier, founders of Rest With Joseph and Friends, Charity No: 1186675. The charity was established in 2019 with the aim of providing burial gardens for babies born through a late miscarriage. Darren and Kay have been together for 12 years, married for 7 years and live and work in Cornwall.

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Kay shares, “We have had two rounds of IVF, the first attempt being unsuccessful, and the 2nd attempt we were elated to have gotten a positive result. But our son, Joseph James Collier was born sleeping at 23 weeks gestation. My waters broke at 21+ 5 weeks and his death was caused by an infection that I had.

“The pain and guilt is still hard to describe. We all say hello at the first scan, but how can you say goodbye? Throughout the scans you watch your baby’s heartbeat, their movements and their growth. They advise all is well and you get through the markers where you think you are safe. You get told you are having a son and the excitement builds. You start building their nursery to be a safe haven, in our case, a monkey jungle. You pick out names wondering what colour his hair and eyes will be and who he will look like and take after.

“Then one wet night, 2nd December 2018, at 21.03 your son is born, sleeping. You will never hear his cry, only the weeping from yourselves. He will never see you, but you see him. His perfectly formed small features, held in your arms. The grasp of his hand on your finger, the adoration and love for a son there, but knowing he will never sleep in his cot or play with the monkeys that are there in his room. He will never crawl across your carpet or shout the words “Mum” and “Dad” and “why?”

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“Your son, born, known to you ... but known to no one officially. You know you have a baby. You know you have life that was made, but as he was born sleeping before 24 weeks, he legally does not exist. He has no birth certificate and therefore no death certificate. He does not exist. He has no place on your family tree. He is not only a baby you have lost, but also lost to the world forever. And even harder is the fact they class it as a late miscarriage and cannot even say he was a stillborn. Even though I had a natural labour and delivery.”

Kay goes on to share about their vision for Rest With Joseph and Friends, saying, “The mental and emotional pain is unbearable from the death of a child. It is made even harder knowing that he does not exist. From this experience, we wanted to help other grieving parents and set up a charity, Rest With Joseph and Friends, Charity No; 1186675 to provide burial gardens for babies born through a late miscarriage. To provide a natural garden, dedicated solely to these baby angels. A place where the rest of the family can go and be together and play alongside. A place for the parents to go and reflect and celebrate their life. A place where the child they know is known to the world. A place where the public will know they exist and a place where they are recognised. A place to get society openly talking, so you do not feel isolated from the world.  It is a subject that is full of taboo and where society has its back turned as it is not discussed.  Thank goodness for the baby loss charities out there for parents to fall too. The loneliness and silence you go through is unimaginable.”

Kay has this advice to share for bereaved families ~ “Don’t feel that you have to stay strong (this goes particularly to men) and hide your feelings because people will not think you are weak. People can imagine the loss you have experienced. Society feels awkward as they do not know what to say or understand the points of baby loss. Society needs to be educated and not kept in the dark.”

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Kay shares, “Darren, Joseph’s Dad, raised funds to register the charity by riding a 20” BMX, dressed as a monkey from London to Truro last August Bank Holiday, with a campaign Ride 4 Joseph. The charity registration was then applied for and we got the number 1186675 on 29th November 2019, just before his first birthday.

We were aiming to do another campaign this year to raise funds to obtain the first piece of land for a burial garden. It involves the monkey back on a 20” BMX riding through Scotland, England and Wales, whilst climbing the famous Three Peaks.  (Ben Nevis, Scafell Pike and Snowdon) We would have completed it 9th May, climbing Snowdon, but due to the Covid-19 situation, we have had to postpone till hopefully later in the year. The gofundme page was set up, but not promoted due to the current climate. The story can be read by following this link https://www.gofundme.com/f/bmx-monkey-rest-with-joseph-and-friends?utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=3c667dabefe84f05951e7b16cbf329d6. “

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Kay continues, “With no actual land purchased, it has been hard to apply for grants and we have relied on birthday fundraisers at the moment to get money coming in. We cannot do any public events at present or any street collecting. We are registered on Smile Amazon, and easyfundraising where people can shop and give a donation from their purchases at no extra cost to them.

We have a website www.restwithjosephandfriends.co.uk  where you can read our story and we have facebook. You can contact us through email restwithjosephandfriends@outlook.com.  We have just set up a TikTok account where we hope to publish videos of events the #bmxmonkey encounters. We are looking into instagram.

We hope to gain as much support as we can to help other grieving families. The response has been very positive, and people have supported us so much. Not only from grieving parents, past and present, who have all expressed the much need and or desire to use our burial garden when we have it set up. We really need people to help us by donating however small, so other people can be helped. So babies have a place not only in the heart of the parents, but in the heart of the world. A permanent place for their baby to be buried where they will never be forgotten.”

Train of Thought

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There is nothing more dangerous than the sound of silence.

Grief is one of the most traumatic weapons of war that can be deployed on the human mind in the conflict of life. It can derail even the most perfect family from the tracks they run.

An idealistic existence, gone in the blink of an eye.

Child loss was the bombardment that pushed our locomotive over the precipice. The drop simply to far to continue as we were. The pain as a family can numb you in a way no anaesthetic or amount of Ice could ever achieve.

For the immediate aftermath, all you can do is survey the wreckage of your life that is now lying in flames before your eyes. Survival mode kicks in and you take shelter in any safe haven you can find. This can come in the shape of family and friends. Sometimes the ones you least expect will have their door open, ready for the casualties of the war raging in your mind. Comfort and empathy cannot take away the piercing pain. It can, however, allow the battlefield aid that can pull you through the immediate danger.

Some you would have banked on being that beacon of hope will sadly extinguish the flame on sight. No lights on an empty runway you desperately wanted to land. It hurts. Even a decade later it hurts. More will switch off as time goes by, however, you will be astonished by the new friendships fate ushers into your path. Sometimes the faces you can only place on a monitor are stronger than the ones you call family and friends.

After a while, at the station of Limbo, you can move on with your life. To stay any longer risks more pain as the darkness circles looking for more souls to entice.

Your vehicle may be beyond repair sadly, however you can start again. With a new normality in hand, you learn how to craft a new engine and a new direction is underway. Is it as fast as before? That’s up to you, the driver. There is no right or wrong. There is no reverse, the past is left behind although constant reminders remain every time you pull into a new station of life. Many challenges will await. Sadness and Joy will be on almost every stop, depending on which way the signal box of life decides to swing that day.

There will be occasions of exhaustion. Scarred from the battles you have seen yet no physical Mark’s show. A fractured mind to some is as painful as any bruise or broken bones. It’s difficult carrying such scars in a world full of judgement and scorn. If you are lucky, a sympathetic ear will listen and offer love and reassurance of empathy and understanding. Sadly there are occasions when some will never understand the conflicts you have survived and continue to face every day.

It’s difficult when you reach a station where you are turned away. Even worse when ridiculed. As a bereaved parent, you would never wish anyone to walk a mile in your shoes. Suffering you would never bestow on anybody. For me, it makes the rejection a little easier. Without that walk through your very own battlefield being replayed every single day, there is a mutual understanding that can never be fully met.

Taboo is one of the worst places you can visit. Unwelcoming and cold, not a place any bereaved parent will ever feel safe. Words being captured at the thought stage and sentenced to life in silence without a judge, jury or executioner. For too long it’s been a place that has left its mark. Thankfully it’s quite a vast space. If enough of you are there together it can change. The more voices joining together as one can overpower any negativity deployed to silence you.

I’m writing this as one of those parents who have broken through this barrier with the help of others. We say the name of our children without fear. We take a sledgehammer and break down the walls of society preventing us from moving on with our healing process. Taboo is now crumbling and no longer a destination we have to encounter.

Hope is always the most powerful navigation tool you can possess. Even in the darkest moments, if you can find a glimmer, no matter how faint, it can pull you through the tunnel and out the other side.

Even if your onward journey for life stays on the track, the scars will always remain even if locked away for a rainy day in the back of your mind. They can escape on days you least expect and with it carry a tidal wave of emotion you cannot avoid. It can be over in minutes or over in hours or days. It’s a storm that no supercomputer can predict. Causing the brakes to be applied and a lockdown you can’t stop. My own experience has been to find somewhere the world can’t see me as my emotions battle within my heart. There is no right or wrong. You can face it alone or even cry for help. As long as you emerge from the barrage is all that matters.

Mental health is not something you can shut down with a switch. It’s a vital cog in the machine. It can be repaired but sadly the specialist help required is not always available. Either overstretched, a postcode lottery or relying on charity for a service we so badly need. For what it’s worth, some amazing charities give so much, yet even they have limits.

As a parent in the Highlands, it’s difficult. There is not always readily available face to face help, especially in the remote areas. At one of the darkest times, you will ever face you are cast into darkness.

Do you lose friends? Sadly yes. The hidden scars, as well as the battles going on behind closed doors, are lost on some and they will fade away.

Can you fight back? Yes, you can. You will be amazed at the new friendships you make along the way. It’s a club you join that's exclusive. You never wish anyone else to do so but when a new member arrives, a sense of companionship kicks in and togetherness shines.

We need to do more. I’m writing this full in the Knowledge that whilst some will show sympathy and empathy, there will always be the screenshot brigade who mock and sneer. I’m not afraid to put my head above the parapet to let others know they are not alone. As a society, we have made huge strides. We can have the debate now about our children taken too soon. We can talk openly thanks to charities fighting our corner. Society has changed their course dramatically over the last 2 decades and hopefully, we can alter it even more.

More specialised support is urgently required for families affected by child loss. Too many slip the net and this isn’t fair or just. Access is required to give every single person a fighting chance of keeping their new train on the track they deserve without fear of another derailment. No more postcode lotteries, no more families becoming just another statistic.

I promised Kyle I would never give up. I know so many other parents have done the same and that gives me the courage and hope to carry on even when I’m tired and broken inside.

We can ride this train together. Forever and a day. 💙🌈🌠

Michael McGuire

Founder Anam Cara Fasgadh

Photo by Michael & Christa Richert

Letters To Heaven #2

This blog entry was first shared on Co-Founder Susan Simpson’s blog on 5th Oct 2016 ~ you can visit Susan’s blog HERE

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“I am With You Mum”

"If I should ever leave you whom I love
To go along the Silent Way, grieve not,
Nor speak of me with tears, but laugh and talk
Of me as if I were beside you, for
Who knows but that I shall be oftentimes? ..."
~Isla Paschal Richardson

My darling Eilidh Beth,

It's six years ago yesterday that we took your final earthly journey with you. I completely shut down in some ways after your death and there are so many regrets that still haunt me my love. The biggest one surrounding your funeral was not allowing those who wanted to be there to come because I didn't want a heavily pregnant relative there. That breaks my heart that because we didn't just explain why that was too difficult to cope with I put a complete ban on those who wanted to
support and stand by us.

They had wanted to visit me in hospital just after you passed away and the thought of that, I'm ashamed to admit, caused near hysteria. They would not have known the pain it would have caused to have them come stand by my bedside and offer their condolences. They would not have known how taken aback I was that' they never even thought about how their happy state would have been too much to cope with at that time.

Words cannot actually describe how hard it is when you've had to accept the death of your baby, the loss of all your hopes and dreams for you and your family, the complete anguish of seeing your children bereft, trying to come to terms with the bare facts that their baby sister died and is not coming home.

Because it's a subject that is not as openly discussed as say cancer or altzheiners people don't know how to act around beeeaved parents, or how to react around them. For such a modern society we've gone backwards in our ways of dealing with things - the Victirians for instance had a completely different view on death. In an article I read it said, "For the death of a close relative, mourning dress would be worn in varying states for up to two and a half years. Photographs of dead relatives became an increasingly popular feature of family albums, often in a lifelike pose with a rosy colouring and even open eyes painted over eyelids.."
I'm not suggesting our society needs to return to these ways of dealing with death my love. When Prince Albert died Queen Victoria spent the next 40 years laying out his clothes and medicine every day, dressing in black to symbolise her grief. That's not a good way to grieve at all but it was her way of showing those around her that she was completely grief stricken and it was accepted, not just because she was Queen, but because death and dying was spoken about as a matter of course.

Och Eilidh Beth, I know ... I'm rambling because it's 4am and I can't sleep. But your funeral lay heavy on my mind yesterday even though it was 6 years ago. How I would do things differently now than I did then! Six years on I still feel bad for shutting out those who wanted to be with us, who shared our deep sorrow. Six years on I still feel bad about making your Dad tell close friends that they couldn't come and say goodbye to you at the chapel in Raigmore. Six years on I still feel I let you down my sweet girl - I let you down by not fighting for more intervention in the weeks and months prior to your death - I let you down by not letting all who knew and loved you come and say goodbye.

One of the reasons I'm so grateful fir SiMBA is that the charity empowers midwives and health professionals to come alongside bereaved parents and facilitate to enable them right choices for them and their baby. That's an incredibly important and vital part of the grieving process otherwise parents and families end up living with so many regrets about that short time they had with their baby.

My darling girl, some days I feel you so close and other days the pain of not having you or your sister here is so hard.

Love be you to the moon and back and round again.

​Mum xxx

Dreams Do Come True

This blog entry was first published on Co-Founder Michael McGuire’s blog HERE

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Dreams Do Come True

18th September 2019.

The night so many aligning stars formulated their plan and guided me home.

It’s been a road full of more twists and turns than a Formula one calendar. As a bereaved Father it’s a journey I wish I had never had yet once you are strapped in, you face the experience head on. A roller coaster of infinity that you can’t get off, no matter how much you yearn to do so.

10 years ago was when my life was given the Reboot I didn’t want but I know has shocked me back to humanity. My Son Kyle may have been born asleep, however he has given me a renewed sense of purpose that was lacking in my previous life.

It’s a lonely journey sometimes. Crucially my co-pilot has been by my side the entire time. There have been testing moments along the way that as a family we have had to battle, my wife’s cancer at 26 being our toughest after losing Kyle.

We have gained some very special friends along the way. Sadly lost many too. Part of me died 10 years ago. I’m replaced by another version of my life. The choice was simple. Almost like a twisted sub plot from Star Wars. Be consumed by darkness and bitterness or see the light and hope “the force is with me”.

As a family we decided to “strike back”. To show the world we will not take anything lying down. And this was the base of some friendships developing that would come full circle a decade on. It also has cost me many friendships and for that I have no regrets.

Our 1st effort was a night for the wonderful Sands charity. Over the coming years we followed up with support for others including Tommy’s and Clic Sargent. The joy in raising awareness and some pennies gave a rush that cannot be accurately described. The feeling of giving a high 5 to every little Star in the sky to let them know we got this.

If you have a Dream, no matter what happens, hold onto it and never lose hope.

Dream? If i wasn’t on that bus I’d rather be on the road to tranquillity. An eescape from the cruel world that was holding me captive. One phone call asked the question. The follow ups answered and went to work.

Months of hard work. Long nights after work. Legal docs, emails. Branding, identity and many tears and smiles.

March 2019 Anam Cara Fasgadh offcially became a Scottish charity. With the aim of providing that free respite that fate never allowed me to go to. To strive to ensure others can be given space to grieve.

As I stared at the new found bank balance of Zero, i wonderd how in earth can we do this? The answer came on an emotional autumn evening in Edinburgh as Anam Cara Fasgadh launched in the Scottish Parliament in Edinburgh.

As soon as the Radio played Kyle’s song, the most beautiful Rainbow appeared in Glencoe as I knew we would be ok.

An evening containing every emotion possible. 10 years on from saying goodbye to Kyle, I was able to speak of him as I delivered a speech in The Scottish Parliament in front of his Mummy and Sister. A normal husband and Father making a dream cone true in the place that one yeat earlier had set the stars in alignment. One of the proudest moments of my life.

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Never in a million years did I imagine this path. Being part of an exclusive club you cannot leave is how I describe being a bereaved parent. Now I am here, I’m devoted to making the world a kinder place in Kyle’s name.

To stand in our Parliament with several other Child Loss charities there to support us was humbling beyond belief. All of us now United with the goal of working together for bereaved families.

Not my words, but maybe too beautiful not to apply as It means a lot to me.

Maybe I can’t stop the Downpour, but I will always join you for a walk in the Rain.

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