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.

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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.

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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

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

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.

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

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

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.

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

Mental Health Awareness Week 2020 ~ #KINDNESS

This week is Mental Health Awareness Week and it is unique this year because of the impact of the COVID-19 Pandemic. I think we can all agree that we have witnessed the very best of human kindness and compassion around the world as we all try to find the best path through this worldwide disaster. Now, more than ever, we realise the importance of protecting our emotion and mental health just as vigorously as we are protecting our physical health against the virus.

Please take a moment to watch this video.

Grief can have a real detrimental impact on our emotional and mental health. When we first lose our child there are the immediate raw emotions of the shock and disbelief of them dying, then the process of having to learn to live without them begins. We go through a myriad of emotions and feelings ~ deep sadness and depression, denial and disbelief, numbness, panic ad confusion, anger but the most important thing to remember is that there is no right or wrong way to feel when we lose our child. For some people, it can be weeks or months later before they allow themselves to ‘feel’ or face their emotions. Some people take comfort in talking to others, over the phone, face to face, or on social media. Some people keep their thoughts and feelings to themselves and prefer to cope with their loss quietly and privately.

There is no right or wrong

Above all, it is so important to be kind., and that is why this year’s Topic for Mental Health Awareness Week is a timely and vital message. If someone is very public about their loss and talks about it a lot ~ be kind and let them. If someone is very private about the death of their child and does not want to share ~ be kind and let them. If someone finds certain days, weeks or months of the year difficult and needs to focus on their child’s death ~ be kind and let them.

Many do struggle to know what to say to a bereaved parent, sibling or grandparent ~ what all our families tell us is that even if someone says “I’m sorry, I don’t know what to say, but I’m thinking of you” that can be so uplifting and comforting.

“I’m sorry, I don’t know what to say, but I’m thinking of you”

The following is a brilliant conversation between Fife Bereavement Network Group members Nicola Reed (Cruse Bereavement Care Scotland), Jenifer Wilson (Step By Step Project), David Irvine (The Compassionate Friends) and Jen Somerville (Child Bereavement UK ~ Jen kindly spoke at our Scottish Parliament event in 2019) discussing how they help support Mental Health and Wellbeing following bereavement.

#DyingToBeHeard #DyingMattersAwarenessWeek #EveryDeathMatters #FifeBereavementNetwork

We would be delighted if you could share your #KindnessStories with us ~ what kindnesses helped you in your grief?

There are some wonderful #KindnessStories here ~ https://www.mentalhealth.org.uk/campaigns/mental-health-awareness-week/kindness-stories

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.

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?”

“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.”

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. “

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.”

Written in the Stars

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Every Story has a beginning. This one began on a Clear night in the West Highlands of Scotland on Tuesday, April 21st 2020.

I’m in my Garden on a clear spring night, eagerly anticipating the Lyrids Meteor shower. I’m with my wife and 10-year-old daughter, with the latter snuggled up with me and her blanket. The Sky is Crisp, and as the blue slowly fades onto the horizon, one by one we see the Sky start to switch on. Millions of Twinkling stars now above us as we look for the one part of our life that is Missing. Our Son, Kyle.

11 years ago, our Journey began into Parenthood. The Short-lived Joy after our perfect little Boy came into the world asleep. Our world simply crashed around us. Our last 11 years have been a rollercoaster and our Blue-eyed Boy has been an integral part of it. He has inspired us and shown us how to be better human beings. We have his Special little sister and of course, his brave Mummy beat cancer. Quite a Journey in the World we once knew.

As we sat and watched the Glistening Sky smiling back at us, our eyes captured the most magnificent Shooting star. The small gasp in the splendour was a moment I will bottle and keep forever as I witnessed her close her eyes and “Make a wish”. This was when reality hit me. We have forever looked to the Stars for our one that shines bright. Our symbol of hope. Tonight in this perfect setting, we didn’t just see our Star. We saw Millions Shining back at a world that is unrecognisable from just a few short months ago. A world witnessing a Pandemic unknown to this generation. Unprecedented times for humanity. A Life of Lockdown.

It’s not the same as World War 2 that we have seen so much about. We are not in hiding from bombs but from an invisible enemy. We are losing the simple liberties that we have all taken for granted since our forefathers gave their own lives on the beaches of Normandy and beyond to ensure we could live the life they would never see. Families now in their 6th week of separation, Children’s laughter no longer echoing around the streets and our High streets now deserted apart from the necessity of Food shopping. Even during the years of the Cold War, we didn’t see a deep Freeze on our lives as brought by Covid-19.

Those Stars staring back at us have been our symbol of hope for 11 years. This hope won’t just belong to our family as we face a 1st Birthday in 11 years not seeing Kyle. This will be affecting the families of all those little stars waving back at us. Now more than ever we are in this together in this new world and Life under Lockdown. This isn’t just Kyle’s Story. This belongs to all of us.

This is part one of some inspirational stories that deserve to be heard.

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Lockdown

“I’m currently furloughed and it’s the longest I’ve been off my work since I was 17. I’ve been off longer now than I was when Sofia passed away,” Robert tells me. “.We haven’t been to her grave since the Sunday before the lockdown started. It hurts! Every Sunday since the end of 2015 she had a visitor, I feel like I’ve left my little girl outside and I can’t get to her”

We have been friends for 4 years now since meeting whilst raising awareness for our kids. Robert, KellyLouise and of course Sofia have become a huge part of our life and I would encourage anyone to read his blog. http://www.264hoursforsofia.wordpress.com

Robert added, “Lockdown has been weird for us to be honest. Yes, it’s been absolutely hard. Not seeing grandparents and doing our day to day things. No soft play for Angelo, no baby sensory for Lucia. Angelo cried when my Mum phoned one night because he missed his gran so much.”

Sofia’s story, in particular, we will touch upon later as the world deserves to know a little more about this quite incredible girl and the footprint she is leaving behind.

Sentiments echoed by Shelley and her journey so far without her little one, Bailey-Jo.

Shelley shares, “During lockdown it has been so hard because it was Bailey’s anniversary on the 29th of March, and we were not allowed to go home for lockdown reasons. It’s been difficult during this time and I have some days where all I do is cry and question if I will ever be a Mum”

Shelley has tragically suffered 6 Miscarriages and 1 “Ectopic” pregnancy prior to giving birth to Bailey-Jo. An ectopic pregnancy occurs when a fertilized egg implants and grows outside the main cavity of the uterus. It can be fatal to the Mother if not treated promptly.

Shelley goes on to say, “First time in my life I heard the words “congratulations Mummy here is your baby” I heard the heartbeat. The nerves totally disappeared and all that filled me was love and excitement! Got given the first photo of our little miracle! Went home and all I did was rest, was scared to do anything. Having 7 previous losses made me a nervous wreck.

“5 weeks had passed, and it was time for our other scan, I couldn’t wait to hear the heartbeat again and see my baby. The cold jelly was applied again, and I looked at the nurse with a massive smile on my face. Something was wrong, something wasn’t right. The nurses face dropped and at that point, I knew something was not how it should be. I said “is everything ok,” she said “let me just go and get a doctor and I’ll be back in a second” that 5 minutes she was away felt like an hour. The doctor came in looked at the screen and said: “I’m sorry Shelley but your baby isn’t where it should be.” I couldn’t believe what I was hearing. I was having another ectopic! I questioned about the baby being in the correct place at my first scan, but the doctor looked and actually the baby wasn’t in the correct place. This could have killed me, and I couldn’t believe what he was telling me. An hour later I was in surgery having my baby removed. The healing process was ok and 4 weeks passed when I got a phone call from the hospital and their words were “Shelley your baby is ready to collect” I went to collect baby and I received a beautiful box with so many lovely things in it! It made it feel that little bit better receiving something to beautiful.”

From England and back to the Highlands of Scotland and Louise shares her life under Lockdown in Aviemore with her family and in particular her Son Malachy.

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“At 11am on 25th November 2009, Malachy was born into this world. He opened his eyes and I looked directly into them. I will always remember those beautiful brown eyes, as it was the only time I got to before he was whisked away to SCBU. Little did I know it would be the only time he would open them. 6 hours and 15 minutes later he took his last breath and peacefully passed away in my arms. I was in complete denial.

“Fast forward over 10 years. Did I think I would get here? Honestly …. no. Grief is strange, it surrounds you, its grabs hold of you when you least expect it. I yearn to hold my baby again.

“His funeral was in a beautiful tiny Chapel on the grounds at Belladrum. Many of you will know it as the place that ‘Belladrum weddings’ happen during the festival. He was laid to rest in a beautiful white willow basket, Willie carried him into the Chapel and to his resting place. His big brothers organised a piper and played ‘Dark Island’. We laid him to rest in Kilvean cemetery so he could play in the playground with all the other babies he joined. If we had buried him in our village we would have never left.”

I met Louise a few years ago, along with Robert, who both of them volunteer for SiMBA charity and raise crucial awareness in memory of their children and also thousands of pounds in the process with the work they do. You can see their work on their website http://www.simbacharity.org.uk and I would urge anyone to have a look at the work they do.

On Lockdown, Louise added further about the challenges her family have faced in this strange new time we find ourselves in. “We now find ourselves in lockdown and all I want to do now is visit his graveside. Tend to the weeds, to say a few words, to cry. It’s funny how you look at things differently when a situation is forced upon you when your choice is taken away, but it’s a temporary thing. When this is all over, we’ll visit him, tend to those weeds, tell him what’s been going on, and perhaps cry, but most importantly, we’ll tell him that we love him, and we always will.”

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Susan from Argyll speaks of her life near Oban, just a short Drive from myself in Fort William.

Susan adds,” We are blessed with 4 daughters ~ Charis is 15, Alex is 12, Niamh is 11 and Eilidh Beth is 9. Sadly, Alex and Eilidh Beth celebrate every birthday in Heaven.

“As I write this it is 36 days since our girls set foot in their schools … 36 days since they saw their friends, peers and teachers … 36 days since we did the 30 minute school run to Dunbeg Primary & Oban High School … 36 days since I set foot in my workplace … 36 days since I last saw the smiling faces of my students … 36 days since I last sat having my morning coffee with my team at school … 34 days since we last visited my parents & brother … 34 days since my husband & children got in the car and left the village … 36 days since we experienced a ‘normal’ day. These are unprecedented times ~ our girls are experiencing living history, a time that their children will learn about in school ~ the Coronavirus (COVID-19) Pandemic.

“And what about the fear of contracting COVID-19? Would they be level-headed like their living sisters, who, on the whole, try not to stress too much about contracting it, and only really worry when I go to work? Or would they be terrified, wondering if they were going to catch it? I also wonder about Eilidh Beth, who has Down’s Syndrome, and her vulnerability to COVID-19 ~ would she be more at risk, would she be in the shielding group?”

On the thoughts of restrictions in place about memorials and anniversaries, Susan shared her experience on this with her girls and the situation her family find themselves in.

“Hubby, the girls and I got up at 5am this morning, choosing to take our daily exercise then to welcome in the sunrise. As we left the house to walk along to the local cemetery, my thoughts turned to those who are unable to visit their loved one’s graves due to travel restrictions. For so many, especially for parents who have lost a child, that weekly or monthly visit to their loved one’s grave is an incredible source of comfort and strength, giving them a sense of connection to their loved one. Not being able to visit a grave, or special place, can have negative consequences on our grief journey, so at times like this it’s vital to find other ways to mark their memory, and to talk to others who understand the pain of not visiting their special place.

“We don’t have a grave for Alex and Eilidh Beth – we don’t know what happened to Alex’s remains and we chose cremation for Eilidh Beth because we knew eventually we would be moving from Inverness to Argyll, so we didn’t want to leave her there. So, we have never had a grave to visit, our special place was first the Inverness Tree of Tranquillity, then the Oban one. We are accustomed to finding other ways to remember them and take comfort in the countryside that we have ready access to. We take comfort in our belief that we will one day be reunited with our girls, that they run free with the angels in Heaven, not a care in the world, content. We take comfort that they are not experiencing the fear of this world.”

Sunrise over the glen in Appin.

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Opening up as a bereaved parent is one of the hardest things you can face in life. When you add on the social stereotyping we face, for a Father it can be particularly tough to open up as we are meant to “look after the family” or “be the strong one” I have openly spoken of this now for a few years and I can assure you the comfort I take and the strength I find come from other Parents coming forwards also. One of them is Danny, who shares how life is under covid19 without his little boy Daniel and also facing an anniversary along with his wife Angela and 4-year-old son Cameron.

Danny says, “Every year just before April, I seem to have a memory block. It’s the same thing every year, and I’m not even sure why it happens. But while my late son Daniel’s birthday 3rd April- will be etched in my mind forever, it’s like my mind forces it out until as late as possible. Maybe it’s a subconscious coping mechanism, I’m not sure. But I’ll see his birthday pop up on my calendar and it goes in and out of my mind as easily as the British holidays marked in it –St George’s day or Bank Holiday Monday.

“Then a few days before, it all stops, and I get a feeling of reliving that weekend we lost him all over again. I know it’s looming and I’m standing like a rabbit in the headlights once more. Reliving the moment Angela’s waters broke on Friday, her in agony the whole weekend, giving birth in the house, the hospital again and finally breaking down in my mum’s arms in the Victoria A&E waiting room in front of dozens of people… and so on. It’s the one part of the experience I haven’t got to grips with entirely. Reliving the feelings is horrible.

“But I think it’s just how I cope with grief; I am pretty similar when my Mum and Dad’s anniversaries approach but I have accepted them better-their final days were expected and easier to come to terms with”

Danny echoes my own thoughts as the 1st May Day Bank Holiday approaches fast. This was when we had the painful news that our own little Boy was asleep and is the start of the trigger mechanism for the memories to flood back. A time of year that is difficult enough already without these new restrictions we all face. The coping mechanisms we have become accustomed to or indeed look to try are now removed. It’s not easy and you can suffer the most anguished thoughts.

Danny continued “We have a little plaque on a toadstool in a crematorium near East Kilbride. Daniel’s is right next to Ellie, his cousin who was sadly taken from her Mum in similar circumstances.

“We visit the crematorium, tidy up the area, put new trinkets/flowers down, tell him what’s up in the world, and let Cameron say hi (Cameron is my son who is almost 4). My wife has other family at the crematorium so she pays her respects, we get back in the car, chill out for a bit at home then get a table at a local restaurant to have our steak pie and raise a glass to his memory.

“Cameron tends to go to his Gran’s on those nights, and Angela and I light candles in his, his brother’s and other babies’ memory. We used to let off a sky lantern or balloon too, but we’ve been more environmentally conscious about that in recent years.

“Sometimes I don’t go to the crematorium, sometimes not to dinner, but in general we try to do something together and those are the things which tend to happen.

“All very normal, as normal can be for grieving our lost boy. But this year, that whole process has been turned on its head. Covid-19 has swept the planet and has had a jarring effect on every aspect of life as we know it. The crematorium isn’t open except for funerals with restricted numbers and social distancing in full effect, so paying our respects isn’t an option. All I can think of is how untidy his little bit must be. It sounds minor and I don’t get to visit often but it’s the simple things which hurt the most.

“And of course, pubs and restaurants are closed, so going for a Croft steak pie simply isn’t an option either. And Cameron, who is 4 next month, can’t go to his Gran’s either. So, there’s really little part of the day that we could keep in a normal sense.

“Instead we just had a “new normal” day. I pushed it to the back of my mind more, went into autopilot, looked after my wife, Cameron, the dog. But I’ve regretted it since but in my mind, I keep thinking I should have done something else. But what? His and Ellie’s toadstool is where he is when we go to talk to him. Dinner – I think I cooked. Or we got Chinese, I really can’t remember. It came and passed like any normal day. And that annoys me about it because it was so unremarkable, I keep feeling like I’d let him down. And let my wife down.”

Danny bravely opens up about his “mind”. Mental health for bereaved parents is crucial. In the “Taboo” world we find ourselves in, many simply remain silent for the fear of the stigma that is attached to them. Counselling services provided by charities are a crucial lifeline to those who need that little bit of friendship at their time of need. SANDS (Still-Birth and Neonatal Death Charity) and Held in our Hearts are vital with the services they provide.

Statistics from Sands show that Sadly, the death of a baby is not a rare event: around 14 babies die before, during or soon after birth every day in the UK.

Stillbirths:

• In the UK in 2018, around 1 in every 250 births was a stillbirth. In total there were 2,929 stillbirths. That’s around eight babies stillborn every day.

• Around one-third of stillbirths happen after 37 weeks of pregnancy.

• Stillbirths account for more than half of the deaths of infants under one year in the UK.

• Stillbirth rates remained largely unchanged from the late 1990s to 2011. From 2012 the rate started to fall. But more deaths could be prevented.

Neonatal deaths:

• In the UK in 2018, 2,020 babies died within the first four weeks of life. That’s one baby in every 360 births

• The number of babies who die in the neonatal period (the first 28 days after birth) has dropped over the last decade, largely because of advances in medical knowledge and clinical care. But recently the mortality rate has plateaued.

Here are some of the figures direct from http://www.sands.org.uk website that shows the number of families impacted alone by Child loss.

Definitions:
A stillborn baby is one who has died before or during birth, at or after 24 weeks of pregnancy.
A neonatal death happens in the first 28 days after birth.
Stillbirths and baby deaths that happen in the first seven days of life, are sometimes counted together and called perinatal deaths.

This is why, hearing other parents Like Danny, Robert, Louise, Shelley & Susan speak up is so important. to break down barriers and allow the Charities like SANDS & Held In our Hearts http://www.heldinourhearts.org.uk to offer the counselling services they do. I will list some links at the end of this blog.

Danny continues to explain how life under lockdown affects us all differently: “I have coped okay all the same, but I have not opened up to anyone about how I’m feeling. I think that’s probably been as big a problem for me as being unable to go see Daniel’s plaque or take my wife for dinner. But it’s adjusting to all this that’s happening which may be a mild inconvenience to most but pulling the rug from under you in terms of how you cope with certain things.”

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Somewhere over the Rainbow

As challenging as Covid19 is proving for all of us, we do have an inner resilience. When you lose a child in a way you can become numb to certain other situations. I say this from someone who recently lost their Father. The Experience of arranging Kyles Funeral 11 years ago undoubtedly gave me the inner strength to cope with losing my Father. The same applies to Covid 19. Its undoubtedly difficult, and as Danny quite rightly says, it may be a breeze for some, but everyone is fighting a different battle. The words “Be Kind” could not be more apt right now.

One thing I have taken from this journey is I have always been a “glass half full” type of person. Its heart warming when you look for inspiration and you see it in abundance. Rainbows have become the national symbol of hope in this crisis. For myself and many other bereaved parents, it has been our symbol of hope for many years. I have previously spoken of my Boy and the signs we take every time we see a Robin, a shooting star or indeed that precious Rainbow. A Rainbow baby is often the term used to describe the birth of a child into a family that has followed a loss. It is the hope many hold onto although it must sadly be said that not every family who yearn another child, can have one.

I try to focus on the hopes and dreams we share in this uncertain world. I will come to that later but first I will share the inspiration of my friends.

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Robert shares, “I can tell you all the negatives in the world but I’m trying to see the positives, tomorrow is KellyLouise’s birthday and we are going have some nice cake and a brilliant lunch and have a play in the garden. Also, I’m getting to know my kids better, I’m playing football and interacting with my son every day all day. My first full day in the house after the lockdown was announce my baby daughter. Lucia kept looking at me as if to say why are you home! She kept smiling and the last five weeks I’ve been getting to see that big smile all day and it makes me smile. I’m lucky, I’m at home with two out of three of my children and my best friend KellyLouise. We miss Sofia every day, but we know she is looking out for us! I can’t wait till the day when I can go outside and see Sofia”

What Robert didn’t add was how much he has given in the name of Sofia. At 22 weeks and 3 days, his little girl came into the world. Robert & his family have raised awareness for Child loss admirably. Their football tournaments have raised thousands of pounds for SiMBA as well as bringing parents together through a love of football. A Love we both share of Glasgow Rangers. This Father has tirelessly campaigned for the debate to be opened on Viability as Sofia in the eyes of the law missed out on being classed as a Still-birth by a mere matter of hours. I know this family and they will not give up without a fight, and they will win.

For Shelley, she has shared these touching words. “I’m a key worker and if I never had work to go to, I would be in a worse position than I am in just now. It’s been very hard! Now because of my 2 ectopics, my only option is IVF so hopefully one day in the future I will have someone call me Mum”

I’m going to add my own personal sentiments on Shelley’s Story. Someone who has suffered not the loss of a child once, but 8 times would be enough to keep anyone down. Not this lady. her closing words being “so hopefully one day in the future I will have someone call me mum”. Even in her darkest hour, there is still hope shining through. That positivity is inspiring and incredible to see. Shelley is also a Keyworker. Putting her health on the line to help the country. You are a hero and I’m sure I echo many other opinions when I say thank you for your service.

Louise also has a positivity that is always evident. Every time you meet her or see her Social media posts, it’s forever a can-do attitude that lifts you when you have had a bad day yourself.

Louise also added “Willie and I have always had different feelings about his graveside. We got him a beautiful slate stone and family and friends leave him mementoes. I always felt disconnected at the graveside, I felt that it wasn’t him. His spirit had left him, but now it lives in his siblings and our hearts. Every butterfly, rainbow and Robin we see is as a sign of him saying “Hello, I’m thinking of you”.

“I will never stop grieving for our beautiful boy, but I am moving forward. I’m moving forward with him in my heart, he is part of our lives and always will be. We create memories. I always remember when Mia, our rainbow baby, asked the mountain cafe for a table with 6 seats, an extra one for Malachy in case he wants to join us. Malachy’s siblings know who he is, they know he is their older brother, they know he died. I hope and pray that they never have to experience that horrible feeling of leaving the maternity unit with no child, of losing their firstborn or the constant thinking of ‘what if’.

Louise’s last point is humbling and an honour to post on her behalf. The love that she has shown has rubbed off on her other children. The simplest gesture from Mia for her older brother should give hope and encouragement to each and every one of us. Children really can show the world how to act with Kindness, we could learn so much more from them.

Louise and her family have brought a lot of love and compassion to the Highlands. we are remote and do not have the same facilities in the larger cities. We do not have access to Counselling services as freely or any assistance when it comes to Child bereavement. Louise is a lifeline in her rural community. Not just for her support group but the Butterfly release she organises annually to bring other families together. Another shining example that Grief does not define you but can bring out the absolute best in you in the worst situation. I will attest that these releases are often poignant and a beautiful way of coming together.

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Lastly for this blog and certainly not least Susan shares her hope for the future we have in these uncertain times.

Susan shares, “I think every bereaved parent has moments during their week, most days in-fact, when their thoughts turn to their child that died. We spend those moments wondering about how they would look, what their personality would be like, what they would enjoy, what they would hate, and, if we are blessed with living children, how they would get on with their siblings.

“As we adjust to life in Lockdown I often wonder what our household would be like with the 4 girls vying for attention, sharing my laptop to do their work, coordinating so that we can all get out the door together for our daily exercise, and how much food I would need to feed all of them and my hubby and I! My thoughts often linger on how Alex & Eilidh Beth would have coped with this new normal ~ would they be as resilient as their living sisters, who have relished (mostly!) their home learning and coped incredibly well with being cooped up, or would they be emotional and have meltdowns about their new way of living.

“That’s the life of a bereaved parent, always wondering what life would be like if their child had lived.

“In these troubling times, we find hope in the positives, in the way our communities have pulled together to support the vulnerable households, in the way that key workers are keeping our country going, in the way that companies and organisations are stepping forward to lend support to so many. We must reach out to each other, lend an ear where needed, a virtual shoulder to lean on, or a virtual hug to show empathy and understanding.”

Susan has been campaigning for awareness with her family for a decade. They have travelled the length of the country to offer their support for others whilst Susan was the Highland Ambassador for SiMBA.

Susan is a Co-Founder and Trustee of a new SCIO, Anam Cara Fasgadh that is barely 12 months old – http://www.anamcarafasgadh.org, along with her husband Andrew and her Mother Irene who make up other Trustees. Their vision is to provide much-needed respite accommodation for families who have lost a child. A free escape from a cruel world and one which they are determined to achieve. Once again turning their own heartache into something positive in the name of her children. Even now in the Lockdown, she is taking part in the 2.6 Challenge that is taking the nation by storm. You can find Susan’s challenge here – http://www.justgiving.com/team/thesimpsoncampers

I can assure you that Susan and her family’s dedication will pay off and they will achieve their dream. Along with their other 4 Trustees and Founders, Jenni, Niki, Claire and myself we know it will work. This is also my own dream and one I’m so proud to be a part of with some amazing people.

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I hope this has given a little insight into the life of 5 ordinary People achieving extraordinary things in memory of their little ones despite the world we live in. From Front line workers to Charity Volunteers. All have suffered one of the cruellest card’s life can deal you yet are still smiling, still optimistic and still caring for others in the hope they never suffer the same.

I’m proud of each and every one of them. I’m humbled for them allowing me to share their words and to talk about their precious children. I’m looking forward to introducing you to the next group of inspiring people who again light up this world with such enthusiasm.

We live in unprecedented times. Every day is an unknown as we look to survive. We will get through this. As long as Rainbows shine, as long as the Moon Glows and the Stars Sparkle. We are in this together now more than ever.

“Try to Be a Rainbow in someone’s cloud”
~ Maya Angelou

Train of Thought

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

Big Steps for Small Feet

2020

A new decade has landed and the embers of the festive season are now fizzling out as the “January Blues” swirl into town. The twilight zone, where time simply disappears in between the 25th December and the 2nd of January and each day becomes a Sunday, is now fading away as we catapult back to reality.

We raise a glass to those we have lost, not just the last 12 months but also those from our heart at any given point in our very own Sands of Time. Up and down the country we see tributes, ranging from precious photographs shared on social media to memorials.

Jan 2nd 1971, 66 souls went to a football match and never returned home. Every year they are remembered as are the 96 Angels of Hillsborough. We will always honour them.

Football as much as it can be vilified can also be powerful when it unites us. You see traditional “rivals” on the field offer hands of friendship and also a timely reminder of the importance of treating the game as such. With tolerance and respect regardless of results.

I’m very fortunate to have a “football family” who are also very caring and compassionate. Too many to mention, however, you know who you are.

We pay tribute every single day to those we have lost by living the best life we can. For myself, this journey began 10 years ago with my Son, Kyle, who was born asleep.

For many, it’s a cold time of year in every sense. A months wage to last 6 years and the return to work. Last year ironically feeling exactly just that.

Before I go any further I want to say, please never feel alone, especially at this time of year. Talk to someone, anyone. My own DMs always open. I can testify first hand that bereaved parents often slip the net. As a bereaved father, “you need To be strong as the Man” was used on more than one occasion. Maybe a reason why my pain remained bottled up for so long.

Some of us set targets and goals. Something to look forward to and achieve for the coming year. It can range from fitness, running that 1st mile to a marathon. A new diet or simply just a new you. However, it’s also fair to remember that it’s perfectly fine to be the same old you. Not everyone needs to change and nobody should ever feel pressured to.

My own outlook has altered dramatically over the past 10 years. My main goal as it has been the last decade? To climb out of bed every day with thanks for being here. Simple but effective. When you lose a child, part of you dies too. You are broken but crucially not beyond repair. Time can heal and although you will never be the same, you can learn to live once more.

Getting up every day, wanting to be here was conquering a mountain. Mentally maybe but still a victory. Each time I open my curtains, Ben Nevis, our highest peak in the British Isles proudly stares back at me. Almost an unspoken acknowledgement that I’m doing ok.

I’m looking forward to 2020 as the year those said mountains offer their solace and support. I want to tell you about the power of teamwork, friendship and walking side by side.

Last summer a last-minute idea coupled with the perfect weather window presented an opportunity. To make the most of the breathtaking part of the world I’m lucky enough to call home and scale the mountain that stares back every day with a twist. A 1 am start to chase sunrise.

As we ascended into the cool summer breeze, already a feeling that something beautiful was being crafted above. A couple of hours of trekking, laughing, cursing and appreciating the wonders finally drew silence as we stepped onto the summit. Not quite the moon landings but for us, the Stars (For Harris) were standing down as the Sun welcomed us. For 30 golden minutes, we were the 2 highest humans in the UK as we took in the wonders I was guilty of taking for granted right under my nose. It was just sheer bliss.

Those stars gave me a feeling. A gut feeling and one to trust. No sooner had my feet landed at sea level had the laptop fired up. Emails sent out to other Children’s charities explaining the wonder I had just witnessed and asking them to consider taking on this majestic challenge as one. Uniting to raise awareness for Child loss and hopefully helping others.

Then reality hits. What have I done? A Co-Founder of our own charity barely 4 months old brazenly asking some massive names to join this crazy idea. Silence and doubt can be a brutal combination that spread seeds of negativity in a mind that’s already been prone to earthquakes.

Ping!

It started with one, then another. Replies chasing away any lingering negativity. Other like-minded individuals looking to chat and explore the options lying ahead.

Several emails and phone calls became a conference call. That, in turn, became 2 and 3 and fate was delivering some new friendships. We had amassed 10 Children’s charities all with a common goal of working as one. We had agreed on a date of Saturday, June 13th 2020 for an Overnight climb of Ben Nevis and officially in November 2019 #Bigstepsforsmallfeet came to be.

I’m a Father who just loves his kids like anyone else. What began as a pipe dream is now a reality. It’s not easy being on this road. You are often isolated. You lose many friends although you will gain some precious ones for life. You are part of an exclusive club that nobody wants to join, although once you are there you lookout for new members you hope don’t pass through the door.

Hopefully, we will show that no mountain is too tall for our children. We will walk together, talk together. Laugh together and cry together. As someone else beautifully said “Maybe I can’t stop the downpour but I’ll always join you for a walk in the rain”

If you want to join us, please see the link below. Also are the links to the 10 Charities involved and please take a look at the work they do.
14 babies die before, during or shortly after birth every day in the UK. That’s 14 too many. One day I hope this figure is Zero or as close to that as possible.

Thank you for your time.

Always a rainbow. 🌠🌈💙

https://www.discoveradventure.com/challenges/big-steps-for-small-feet

Www.anamcarafasgadh.org

Www.bliss.org.uk

Www.childbereavementuk.org

Www.thelullabytrust.org.uk

Www.sands.org.uk

Www.sands-lothians.org.uk

Www.starforharris.co.uk

Www.twinstrust.org

Www.togetherforshortlives.org.uk

Www.tommys.org

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This post was originally shared on Anam Cara Fasgadh Founder Michael McGuire’s site HERE

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

“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

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.

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.

X

Letters To Heaven #1

Hello my darling!

Your big sister Niamh and I went to the Cathedral today ~ I have not been in this amazing building for years. Niamh put money in the donation box and then chose your candle and together we lit it. If I had been on my own I would have shed more tears, but tears are difficult when you have a 3-year-old elephant exploring a place of peace, tranquillity and silent, reverent reflection! You know Mummy doesn’t like to give in to tears too often, but I often feel like they have been bottled up for this week each year. I do not have a clue, by the way, where Niamh learns these poses!!

As I watched the flame on your candle flicker and cast a soft glow over the stand, I was reminded how much you really have been our torch in the darkness, shining bright and lighting the path that God would have us take. I gave thanks for His divine promises to us that you would make a difference in this world, and I gave thanks for the ripple effect your death has had. It doesn’t mean I don’t miss you, it doesn’t mean that I understand why you were not able to live with us, but I can still give sincere thanks despite my questioning.

Niamh asked me what the cushions were for on the floor, so I explained that people in this church kneel to pray. Well, you know your sisters, they don’t need much of an invitation to pray so she insisted we get on our knees and pray! And she kept going back to your candle and spoke about you being dead and in Heaven with Alex and Xander and Grandpa and Aunty Tooty. 

That is what made me really sad that at 3 years old she has already lost her sister, her Grandpa and her Aunt Tooty. I am so thankful that children are so accepting of death and so matter of fact, but I do wonder what impact it has had upon your sisters. Time will only tell I guess and the hope is that the Lord can use it for good as we know He can with anything we go through.

Anyway, my love, thank you for being such an amazing wee sister and for showing your big sisters how to spread God’s love and healing!

Mummy misses you and loves you. xxxxxx

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This post was first published by Susan Simpson, Anam Cara Fasgadh Founder, on 20/09/12 and can be found HERE