Chris was a lover of life and achieved so much in the short 15 years of his life. On August 14th 2006 Chris went to Capel Curig in North Wales with 5 friends that year had been a very hot summer and that weekend there was a heavy rainfall that caused an extreme waterfall. Chris fell into the waterfall. He was sucked back into a cave below and his trainer was caught in a branch of a tree. A team of divers and search and rescue dogs plus locals searched downstream for him for 7 hours his body was recovered at 7.03 that evening.
Chris Debbie’s son
My life changed that day ….
legacy
Within a week of the funeral I began what I never imagined would be a legacy in Chris’s name educating over 500.000 young people across North Wales and the UK about water safety. I have won many Awards for my work. However the pain never leaves you … I guess acceptance is the final destination for grief but anniversaries still bring those painful feelings to the fore.
BUTTERFLIES
In the early days around 18 months after losing Chris I attempted suicide on two occasions, I don’t tell this for pity I tell it to help others because if I can recover from this dark place then I feel anyone can. It took lots of personal development work and I found myself on an amazing Spiritual path which I follow to this day. I truly believe there is so much more to life than we realise and have had too many signs that Chris is with me always… Rainbows … I feel them before I see them. They come at times when I need them and when important things are coming. Butterflies one day I walked the path to Angel Bay where I have scattered his ashes I had a strange feeling …. Suddenly a host of white butterflies were coming towards me they settled on my body and I felt myself opening my arms … People stared in amazement … It felt like the hug I’d yearned for for years.
Debbie Turnbull
WATER SAFETY
Today I am looking forward to taking a huge leap with my Water Safety business teaching teachers to educate young people in schools. It is hoped that with our new plans we will educate over 50.000 young people a year. A Legacy that will live on long after I do …
I live in hope that when my time comes to meet Chris once again, in his Castle In The Sky, we will both be reunited for the rest of eternity.
If you enjoyed reading this inspirational story then please check back this week as others share their stories too. Find out more information here.
The amazing Sue France shared hers on Monday here’s the link.
The fantastic Kiki Deville shared hers on Tuesday here’s the link.
It was 5 years ago now that my world shattered and changed forever.
THE BEGINNING
Let me start at the beginning… 2015 was a year full of so many different emotions and brand news that I had to get my head around. In the May I suffered a brain haemorrhage and ended up as an inpatient which is how I first learnt I was pregnant. I was shocked, overwhelmed, overjoyed, and confused. I didn’t think it would happen for me.
the scans
It was a scary beginning, trying to recover from what had happened to me and to now protect my unborn baby. I was discharged from hospital and had a new lease of life. I was so excited to know that I would soon become a mummy. I started my pregnancy journey as most do – having your 12 week and your 20-week scans. I remember feeling apprehensive but bubbling with excitement. At my 20-week scan my little baby kept hiding – I was sent out and told to do star jumps and bounce to try and get him moving. He was just not playing ball. I ended up having 3 appointments for my 20 weeks as he was being so stubborn.
On the third visit… no one expects to be met with those concerned eyes as they look back at you having scanned your baby. Instantly I knew something was wrong and my stomach knotted so hard, my chest crushed, and my throat fought back hard to stop the tears. “I’m not quite sure but something is wrong with your baby’s heart”. I’ve always thought ever since that my little boy was trying to hide his heart problem so he could live.
HEART WARRIOR
This is where my journey began with my little heart warrior. I was transferred to a heart specialist hospital for the remainder of my pregnancy and on Christmas Day 2015, my little boy, Joshua, was born, 2 weeks early.
The love that fills your body as you welcome this little human that you created is so incredibly powerful and one that never ever leaves you.
Tiny Joshua soon after birth
jOSHUA
Joshua was born with severe Hypoplastic Left Heart Syndrome (HLHS). It is one of the most severe heart conditions. Joshua was whisked away very quickly following his birth and prepared for transfer to the Royal Brompton Hospital. This became our home for almost 7months. At day 2 of life, he underwent his first surgery. The first is always the riskiest as they are so fragile. He found recovery hard but as we soon realised Joshua had immense fight in him as well as one of my traits – stubbornness!
At 4 months he then had stage 2 of his surgeries as he started to struggle. Luckily Joshua was a big boy for a heart baby which served him well and enabled staged 2 to happen earlier than planned.
Joshua always smiling
HAPPY
Joshua was a character and became so loved and known to fellow Brompton families and the staff. He was the happiest little thing, with the chubbiest cheeks. He showed so much concern for other babies when they cried and fought so hard throughout his journey.
We were able to take Joshua home twice during his life – once in the May and the second in the July – both for short periods as sadly he deteriorated and had to be taken back in.
In this time, we witnessed our little boy grow and develop into such a beautiful, kind little soul. He was infectious! He also endured things you’d never wish on anyone. There were some truly enormous highs and some heart-breaking lows. However, Joshua had this smile that made any bad day instantly fade away.
Joshua’s smile lit up the room
NIGHTMARE
Sadly, on his 9month birthday, after having spent a great day round my mum and dads, baking cakes and generally being so happy. He later deteriorated at home, and we had to call for an ambulance who took him into our local A&E.
Joshua happy and playing
This night has replayed out in my dreams most nights since I lost him and haunts my thoughts when awake. Things went wrong that night at our local and sadly at 2:34am the following morning he had his 4th and final cardiac arrest and left this world. The sound that left me as he lay lifeless and the begs I remember making to bring him back consume me. I sat holding him for 6hours after he died, and I felt him grow so cold on my chest, so heavy. My life literally crumbled. The feeling of losing your child is indescribable and the pain is unbearable. I just wanted so badly to switch places with him, take his pain away and to let him live. Let him have his firsts, let him experience life’s events, fall in love, have his own family.
GRIEF
The weeks and months that followed are a blur now, but I remember feeling so incredibly numb and so lonely. I didn’t want to burden anyone and tried hard to show I was okay, but you never really are okay after such an event. You just learn to deal with it and how to carry on somehow.
Joshua happy
POETRY
Each year I found myself writing Joshua a poem – a letter almost of how I was feeling, how I missed him so and what the last year had entailed. It has become my promise and almost my yearly tribute to him. I think of him every single day and often get caught off guard and just sob. I feel guilt a lot, especially when I laughed for the first time after he passed away. I felt physically sick that I had shown an ounce of happiness.
I have found life hard since and I now suffer with anxiety, but I found throwing myself into work or a project and keeping busy keeps me in an okay place. I have met a man who I am in-love with and have also had 2 other children, Harrison, and Millie since. Sadly, Harrison too was born with a heart condition. They are both so amazing and fill me with so much love. I also sadly had a miscarriage and lost twins before welcoming Millie.
CHILD LOSS
Loss isn’t spoken about anywhere near enough and has a stigma that almost makes it so it shouldn’t be spoken of, but there are so many of us that have experienced loss. We all deal with it in very different ways but support from others is an enormous and powerful thing. Being able to share your story or provide a shoulder to cry on for someone else is huge. Loss is a lonely place, but we should be able to say their name without feeling shame or being met with awkwardness or eyes that look away. I absolutely love being a mum and feel so incredibly lucky to have had all of my children.
Sophie with Joshua
LEGACY
Since losing Joshua, my father and I have made it our mission to bring positive from Joshua’s death. I didn’t want it to have been for nothing. We have set up a charity called “The Joshua Lynagh Foundation”, The JLF, which went live on his anniversary this year – 26th Sept. The charity is to help others who have children with congenital heart disease (CHD). I want to ensure no one has to experience what I did. We aim to raise awareness of CHD, provide education to families and medics (especially those medics at local hospitals who do not have the expertise to deal with cardiac children) and help empower families, so they feel heard and not isolated. My ultimate aim is to learn from failures we experienced that night and to ensure they do not occur again.
You can learn more about Joshua’s story and The JLF at www.jlftrust.org.uk – you can help raise awareness of the charity by liking, sharing and donating. We can also be found on various social media sites:
Our first fundraising project, “ECHO”, is to raise funds to purchase a Vivid IQ portable echocardiographic machine with three probes (baby, child, and teenager – S12, S6 and S4) for The Royal Brompton Hospital.
This piece of equipment will help diagnose life-threatening heart conditions. It will be used on between 500-1,000 children per year, helping up to 5,000 children over a 5-year period.
As a portable machine, it will allow clinical staff to take it to other hospitals where children present to A&E very sick and for newborn babies. These hospitals will include Chelsea and Westminster, St Mary’s, Hemel Hempstead, and The Royal Brompton and Harefield hospitals. The total cost is approximately £50,000.
This piece of equipment will help save children’s lives. It will enable clinicians to scan patients to diagnose: sick newborn babies, children with holes in their hearts, and those who develop heart problems, such as myocarditis (inflammation of the heart) or cardiomyopathy (heart muscle disease).
If you enjoyed reading this inspirational story then please check back this week as others share their stories too. Find out more information here.
The amazing Sue France shared hers on Monday here’s the link.
The fantastic Kiki Deville shared hers yesterday here’s the link.
14 years ago I joined a club. It’s a very exclusive club, but one with a surprising amount of members. Sometimes it feels like a secret club, although none of the members want it that way, but society works hard at keeping us underground. I should explain that no one wants to be in this club. None of us ever dreamt we would join. None of us want to be here. None of us want anyone else in the club. But there is no going back once you have taken your membership. Joining this club represents the darkest moments of your life. This club has the only other people on earth who have even a fraction of an understanding of how fundamentally your life has just changed.
DEXTER
When my son Dexter was born, it was immediately clear something was wrong. Not because of anything overly dramatic, but a feeling I had, an instinct you could say, that all was not quite right. The next 24 hours would be the worst, to that point, of any 24 hours I had ever endured, as we were told that our beautiful son had a genetic condition (Zellweger Syndrome), and he would not survive for longer than a few months.
Beautiful Dexter Kiki’s son
4 weeks and 3 days later, he died, in our arms, at Derian House Children’s Hospice. In a twist of cruel irony, he died on International Baby Loss Awareness Day, October 15. Membership to the club commenced.
LONELINESS
There is nothing quite as lonely as losing a child. All of the light disappeared from my world, and I thought I would never know joy again. In some ways, the darkness remains even now, like an Instagram filter that sits over the top of every moment of my life. I can be laughing and enjoying a moment with someone and then BOOM, suddenly I remember that I broke that day, and the guilt floods back that I have somehow learnt to enjoy life again.
That guilt took a long time to come to terms with, and without the other club members to discuss it with, Im not sure I would have learnt to reconcile happiness with such deep, deep sorrow.
Society would have you believe that we don’t exist, or that we should at least remain hidden precisely because society knows that the pain of child loss is indescribable. The mere thought of it evokes terror in parents. As it should. There are no words. There is only the rawest of emotion. A desperate feeling that life will never be the same again, because put simply, it won’t.
LIGHT
Light can find its way through, with help. Which is why our club is so important. It plays a vital role in helping us understand that you can have joy again. It also helps us vent at the frustration many of us feel at being silenced about our children.
We know you mean well. We know you are usually loved ones who want the old version of us to return. We know that sometimes you think its time we were “over it.” And we know that none of this is because you don’t care. Its terribly difficult to watch someone you care about be so viscerally sad. But when you won’t say their name, when you flinch when we do, when you never acknowledge their birthday or anniversary, it drives us again to that feeling of loneliness when it all began.
Without my club, without the friendships I have formed with other bereaved parents, Im not sure I would ever have found the strength to move forward, with Dexter beside me, in to a life and a career that I am so wonderfully grateful for. But not a day goes by that I don’t wish I didn’t know these people, for their sake, and for mine.
A SONG FOR DEXTER
Finding pragmatic ways to deal with my grief, and using my platform to try to break the stigma around bereavement has led me down a path that I could never have imagined for myself. I had always wanted to write a song for Dexter, and last year, I met another songwriter, we forged a friendship and a partnership, and I finally wrote that song. (The Day is available to buy here via Amazon or here via Apple It is also available on streaming platforms, although I would encourage you to purchase as the profits go to Derian House Children’s Hospice and Together for Short Lives).
Kiki Single cover image
THE KEEPSAKE CIRCLE
After this process, I realised that it helped me immensely, and it also opened up dialogue with people about bereavement. In partnership with Derian House, my songwriting partner and I have spent this last year meeting with 10 bereaved families, and we have written 10 original songs in musical tribute to their children who are no longer with us. The project, The Keepsake Circle, has been so rewarding and getting to know these children and hear these families memories has been an incredible privilege. The album will be available for purchase from November 12.
The Keepsake Circle
And to my fellow club members as we enter in to Baby Loss Awareness Week for 2021, I am with you as we remember. And I thank you for helping me feel less alone.
If you would like to connect with Kiki then you can do so on instagram here
You can find out more about The Keepsake Circle on instagram here
If you enjoyed reading this inspirational story then please check back this week as others share their stories too. Find out more information here.
The amazing Sue France shared hers yesterday here’s the link.
I lost my daughter to Cancer when she was 27 and it was over 20 years ago. However I share the same “what if she had lived?” feelings as any parent who has lost a child, whatever the age.
Rachel Sue’s daughter as a little girl aged 4
MEMORIES AND RITUALS
Memories and rituals are precious to me and were never more so than in lockdown.
My daughter loved Spain and a year before she passed away she had bought a holiday home near Puerto Banus . It was her wish for her ashes to be scattered from a speed boat just outside the harbour and this we duly did. We went out with her husband on quite a choppy sea and the ashes scattered behind us in the wind.
The beautiful Rachel France as an adult
Every year since then I have travelled to Spain and thrown flowers in the sea and I was devastated when I couldn’t do that this year. I happened to mention this to a lady called Ali Meehan who runs a networking organisation for expat businesswomen. I had met Ali when I spoke at her International Women’s Day Conference in Marbella in 2018. She recalled that I had won a beautiful white orchid in her raffle and used some of its flowers as my sea throwing petals that year and this had stuck in her mind. During lockdown Ali and I had come together to hold joint zooms between her group and my group. I counted her as a friend but what she did next took my breath away. On Rachel’s birthday, she went to the beach at sunrise and as the sun came up over a beautiful sea she threw roses in the water for Rachel. She sent me a video of this and it will always be a special memory.
Petal scattering in memory of Rachel in the sea
KINDNESS
This exquisite act of kindness made the world of difference to me and I urge any friends of parents who have lost babies to give them some thought this week too. I know we all often forget the birthdays of those children who belonged to our friends. Sometimes we are only reminded when we see a facebook post and then we quickly jump in and send our love and condolences. But this week if you could just contact your friend and send flowers or a card or even just a message, you have no idea how much it could mean.
Sue France – as a child Rachel spent many happy summers on Welsh beaches too where this photo was taken
Sue France runs the popular networking group. Creative Connecting in Cheshire and she is Patron of the charity www.giftofawedding.org
If you would like to contact and engage with Sue then her instagram link is here.
I hope you are all ok and have had a lovely weekend. I haven’t posted on here for a while and I will go onto explain why including something very special that will begin tomorrow for the whole of this week.
Violet watching bubbles at her friend George’s party. The last party she ever went to. Violet Skies
September
Those of you who have been following and reading my blog posts regularly will know that September is an especially hard month for us as our beloved daughter Violet died 5 years ago at the the end of the month and a year later her brother died on the 1st. Usually I would have written lots of posts about it and the huge tidal wave of grief that hits me again every single year but this year I haven’t. That doesn’t mean I wasn’t floored by it or that I didn’t find it hard. I did. I just decided I wouldn’t share it again on here as I felt I was simply repeating myself every year.
Violet and Arthur’s Grave September 2021
escape
Luckily this September we managed to do the thing I love to do the most when I get hit by the wave of grief and that is to escape. This year we escaped to Corfu and I spent Violet’s anniversary on a beautiful beach listening to the crashing of waves. I even did an early morning yoga and meditation on the beach. I really feel travel can be healing and a good way to do something positive for your spirit rather than being sat in what can feel like a groundhog day every year.
Me in Corfu September 2021 when we escaped 5 year anniversary of Violet dying
BABY LOSS AWARENESS WEEK
Anyway as we head now into Baby Loss Awareness week and October which is Child Loss Awareness month I still wanted to continue to talk openly about child loss and also to further conversations around the subject too.
Over the years this exclusive club I am a member of has introduced me to other fellow members who all like me didn’t ever choose to be here but like me have gone onto do some pretty amazing and special things in memory of their children’s legacies. They also like me have chosen to openly talk about their children in the hope it helps others to do so too and that those who are outside our club can better understand what others are going through which can help to smash the taboo surrounding child and baby loss.
GUEST WRITERS
I am honoured that some of those I now have the privilege to call friends have agreed to share their stories over the next week on here. These friends are all amazing, strong and phenomenally inspirational. They all have lost their babies at differing ages and for different reasons so I will let them tell you in their own words starting from tomorrow.
I hope anyone who is going through any kind of loss at the moment is being kind to themselves and to all those who love them. Reach out and send a quick message to someone you know who has suffered loss to simply say you are thinking of them.
November is here at last and I say that not because it is a favourite month but just because October is finally over. This year it was particularly tough.
October
I was supposed to be visiting Lisbon last week for my mum’s birthday treat but had to pull out and left her with my sister as my little rainbow baby was poorly so I couldn’t leave her at all. The illness of my daughter combined with Baby Loss Awareness Month was the main reason October was super stressful and a tough month for us.
A poorly rainbow
Our rainbow baby was the same age as Violet was when she died and she contracted pneumonia twice, which was exactly what happened to Violet before she was admitted to hospital never to return. This is why this past month has been so fraught for us resulting in hardly any sleep; stress levels beyond belief, emotional meltdowns on a frequent basis and the consumption of a vast amount of comfort food/drink on a regular basis.
Our fear – this was Violet the morning she died.
Expert jugglers
We also managed to still juggle work commitments, the organisation of a surprise birthday party for my mum and even had a drink out baby free for an hour or so for a friends birthday before hot footing it back to soothe a poorly baby.
Update
Health wise my daughter is luckily recovering well but we’ve decided to keep her away from nursery until the new year at the earliest to allow her lungs to fully recover and to ensure her immune system is back to full strength too. We will continue to juggle work commitments and childcare thanks to the support from family and friends. There’s no way we will risk losing this little girl too.
New parenting territory
It sounds strange but today I feel a little relieved because yesterday our rainbow reached the exact same age Violet was when she died so today she has surpassed her sister’s age by one day. It makes no logical sense why I feel relief at this but my stress has lifted slightly.
Is this normal with rainbow babies? Anyone else feel this way too? Or am I just odd? Please let me know.
So now we’re on totally new parenting territory as we have the oldest living child we have ever had and it’s all fresh new sailing for us from now on.
These last few weeks have been especially difficult for us as our rainbow baby is sick. We had to take her into hospital where she was diagnosed with pneumonia, which is what her sister died from. Back at home now luckily and she’s responding well to antibiotics but it is unbelievably stressful anyway without our history with her sister.
A beautiful cloudy Violet sunset over our house last night
Lack of control
I realised a key reason for the stress of having a poorly child or loved one or heaven forbid their loss is the lack of control over the situation (unless you’re a murderer of course but that’s a different story!).
The fact you had no control in the end over whether they survived or not. You did everything you could possibly do but even that wasn’t enough and it is the acceptance that at the end of the day we really don’t have control over these things.
Poorly child
When our children are sick, again, it is the control issue that makes us super stressed. We can do everything we can possibly do to look after them. Give them antibiotics, fluid, pain relief, and take them to the doctors or to hospital. Listen to the “experts” and follow their guidance. Other than that there isn’t much more we can do. We are powerless and have to do our best then simply hope.
Violet in hospital the day she later died suddenly
Regaining control on life
I think that is why after the loss of Violet and then Arthur doing things I have control over helped me to regain a little of my sanity.
Managing a house renovation and extension project was something I could control. Rehabilitating a German Shepherd from being a working dog into a family household pet again I could do and get some comfort from. Setting up a fund in Violet’s memory and organising a charity ball again was something I could control and work at organising. We have now raised a total of £42,860 for Alder Hey Children’s Hospital.
Photo of our house during the renovation with Dexter our GSD in shot too
More of a control freak
Yes I admit I am probably more of a control freak in some respects than perhaps other people but after speaking to a few others who have had to endure looking after sick children or unfortunately baby or child loss it is this loss of control that is a tricky one to deal with.
My advice is to try to do other things you can control to try to balance out those things that you simply can’t.
Big hugs and lots of love
Sarah
Always Violet Skies xx
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Some of you who read this blog, know me or just follow me on social media may be aware that my daughter Violet died at the end of September but what you might not realise is that her funeral coincided with baby loss awareness week 2016. The second anniversary of that is today.
2016
At the start of this week in 2016 we got the news that the coroner was releasing her body so we had to finalise things with the funeral directors and to make arrangements for her funeral, including making decisions like cremation or burial. We decided to bury her because I couldn’t face the idea of my baby being burned. Crazy I know as she was dead already but I still felt as though I was protecting her little body by burying her instead. Then we had to decide where to bury her and to pick a plot.
Choosing a burial plot
We decided on southern cemetery as it was close to where we live and there are lots of important and respected people resting there. I know it seems ridiculous but I felt as though she’d be in good company alongside Elizabeth Gaskell and Anthony Wilson – if it’s good enough for them then….
I remember us visiting Southern Cemetery and one of their team taking us to show us the baby section of the cemetery. They explained there was only one of these tiny plots left beside the road going through the cemetery. It was a small plot surrounded by other little baby graves. Next to it was a communal baby grave shared by many that must have had them all stacked on top of each other as though they were on a supermarket shelf. It made me feel ill and I decided over my own dead body would she be buried here.
Investing in the future
I asked the cemetery man was there not anywhere else and he said we could have a family burial plot but that would be more expensive. I said “fine she’s not being buried at the side of a road even if I need to put it onto a credit card”. I asked him to show us what they had available. He showed us several plots and one was under a big cherry tree opposite the grave of Kirsty Howard, the amazing girl who was so brave and raised so much money for Francis House. I said that one would do. None of the plots were acceptable or perfect because my baby being dead wasn’t acceptable. Our final choice was simply the least offensive and I strangely felt comforted knowing that Kirsty would be her neighbour. I hoped being kind and compassionate that she would look after my little girl.
Violet’s grave
The funeral plan
In the middle of Baby Loss Awareness week 2016 I wrote Violet’s eulogy. I wanted to ensure her send off did her memory justice and that everyone would know exactly who she was and would understand why we loved her, as much as we did. We selected her favourite songs for her funeral, a close friend agreed to give the service for us and we thought about what she would like. I know she was only 15 months old but she had very strong opinions and preferences on things. She loved balloons so we asked everyone to bring a balloon to her service. She liked to make people smile so we arranged for all the balloons to be collected then taken to the children’s hospital and her nursery. We set up her fund in this week too for Alder Hey hospital’s cardiac surgery fund and asked people to donate to it.
A photo my brother took behind him in the chapel at Violet’s service. So many people cared & some were stood outside
Funeral day
The day of her funeral, the 14thOctober, was the penultimate day of baby loss week 2016. I remember it was a crisp autumn day with blue skies and sunshine, even though there had been bad weather forecast we only had high winds that day. I went through the day in a bit of a trance almost as though I was an outsider looking in and I carried the angel bear that I had been sent the day before. I cuddled and sobbed into the bear throughout the service. The bear was a gift from an amazing little charity called Heart to Heart UK that also gifts bravery bears to children undergoing heart surgery. Their gift really helped me.
My angel bear
Wave of Light
The day after Violet’s funeral was the last day of baby loss awareness week. All around the world people lit candles at 7pm creating a wave of light in memory of all the babies lost. We lit a candle in our empty quiet house full of sympathy flowers and cards then we cried some more and had a drink.
Decisions, Decisions…
I decided to write about our week in 2016 because sometimes you don’t think about what parents have to go through logistically just after their baby dies. You almost forget that they have to make important decisions during this most horrendous time. Decisions about choosing a funeral director and whether to bury or cremate? What to do for a service? Whether to ask people to donate to charity and if so which one? All these things would be difficult enough if your child hadn’t just died but they have. The world as you know it has just ended. The most important person in your world has gone and you have to make these decisions.
So please join in with celebrating the end of child loss awareness week by lighting a candle at 7pm on Monday to join the wave of light. Also have a drink with us as we mark the end of the anniversary of probably one of the most difficult weeks of our lives.
Thinking of our lost babies Violet and Arthur this week but about our darling daughter today. The day we laid her to rest with music, balloons and colour just how she would have wanted.
