Carolyn Mayling went from having a ‘perfect’ life – married with two beautiful daughters and running a performing arts theatre school – to the absolutely unimaginable tragedy of losing a young child. A drastic turn in events occurred when her youngest daughter was suddenly diagnosed with a rare and life-threatening condition. The sudden loss of Rosie changed their lives forever, but despite the tremendous pain, grief and feelings of hopelessness, Carolyn found the courage and strength to grant Rosie’s last wish and started a charity to help other children and their families to find hope and happiness. yourself

It was 2002, and at that time I had two children – Ellie, who was aged 14, and Rosie aged 10. Everything was fine and we had a great life. Rosie was very involved in our performing arts school and was a very talented performer. She was always busy writing shows and she was very musical. Both of my daughters attended our own theatre school, Redroofs, and we had the life most could ever dream of.

The beginning of a terrible nightmare

When Rosie was coming up to aged 11, she started to get poorly. She had a series of stomach aches and sickness and she was admitted to the hospital for a routine examination. After some standard tests, she was sent home; they told us it was probably due to over-eating pizza from a sleepover, which was a relief as I was reassured that it was nothing more serious. Over the forthcoming weeks, Rosie was doing pantomime in our theatre, and while in rehearsal, she started to get very ill again. In November 2002, she had also developed a cough which got worse and worse. It eventually got so bad that she had to be taken off the show.

By January, she became so poorly that she was referred to a consultant, and was once again misdiagnosed. She was sent home after being diagnosed with a chest infection but didn’t get better with the prescribed medication. Finally, a friend of mine whose son was a GP questioned why further tests and scans weren’t being done. And so that prompted me to ask my consultant as my concern for Rosie’s health was growing. The response I got was that tests could not be done ‘willy nilly’ and the consultant continued to advise that Rosie just had a chest infection. This then was changed to a pneumonia diagnosis and I was once again reassured that it could be easily treated. However, I just knew that I needed to push for something further to be done – as a mother you just know when something isn’t right. So finally the scans were done, by which time Rosie’s breathing had become really difficult and she was in a really bad state. Twenty minutes after the scan results came back, I was summoned into a private room with the consultant, who suddenly turned extremely white and pale. She said we have to get her up to John Radcliffe immediately – the main hospital that specialises in Acute Paediatrics. The doctors suspected that Rosie had pulmonary embolism on the main arteries going into her lungs, which was why she was having problems breathing. And so they blue-lighted her, which was really scary and she was rushed straight into intensive care.

At this point, I just knew that something was very wrong. The doctors were all very confused and perplexed and still didn’t know what was wrong with Rosie. The tests were all finally being done now and loads of people were poking and prodding her trying to figure it out. She was put on oxygen and eventually moved onto the children’s ward, alongside other children with respiratory issues, cancer and other life-limiting conditions.

After a long, long time and keeping her in hospital, they found that she had blood clots. We were summoned into a room with various top consultants who advised that they had to remove the clots. A biopsy would follow to make sure it wasn’t anything more sinister. I was totally terrified as it was major surgery, but it went smoothly and the clots were removed and sent off for biopsy.

The results came back to confirm that they were indeed clots, and nothing more. We were so relieved and assumed that everything would be fine. A couple of days later, one of the paediatricians was scanning her and we were horrified to hear that the clots had come back! The consultants didn’t understand why and continued to do more tests and more tests after that. It was just very awful and Rosie was really confused, frightened and agitated. She was finally diagnosed with vasculitis – a very rare autoimmune disease that affects the blood vessels, which was why she was forming clots. Because of the rarity of Rosie’s condition, the consultants were trying to work out the treatment for her, and so we were in and out of hospital for months on end. It was really awful for Rosie, but also for me as a parent as I felt so afraid and helpless.

Rosie was in and out of the hospital for two-and-a-half months and finally came home at the end of April. She was desperate to go to school to see her friends and I remember one morning when she had a little school bag by the door. She was all ready to go back to normality, but she was so weak and had lost loads of weight. It was heartbreaking. She wanted to live a normal life again but I had to tell her that she wasn’t well enough to go to school, or to spend time at her friend’s house.

Then Rosie went out into the garden and she got on her swing. She was just swinging and I was worried and called out, “Rosie, don’t swing too high on your swing. Please don’t swing too high; it’s just it’s too dangerous”! And she answered back, “Mummy, don’t limit me. I do not want to be limited in any way”!

A strong will and a loving heart

While in hospital, Rosie was noticing the lack of support for the children around her. I, as a parent, was also incredibly stressed, lonely, frustrated, isolated and terrified. This was obviously the same as every other parent in the hospital, who also had children who were going through horrific cancer treatments, chemotherapy, and other invasive procedures. There was no support for the parents, either, and I identified a desperate need for this.

One night, I was crying in the bathroom as I just didn’t know what to do when one of the nurses heard me and asked me if I was ok. My immediate answer was, “Yes, I’m fine”, but I was not fine at all. I just thought that I couldn’t take this nurse away from where she’d been, which was with the children. And so I had to say I was fine so that she could continue with her work.

Rosie’s last wish

While spending so much time in the hospital, Rosie saw the many children in the ward, with lots of different conditions staying for long periods of time. The children literally had nothing to do, and they were just as frightened as she was, They basically needed something to distract them as Rosie did, and during her stay, she had already gone through all of the toys in the playroom. She was very frustrated and there was nothing to distract the children from their boredom and fear. So one day, Rosie was in the playroom with a member of staff when she announced, “When I’m better, I’m going to put on shows to raise money for the hospital because I don’t think that the children are getting enough support. And wouldn’t it be great to raise some money for them?! We could do something nice so that they all don’t have to be so bored.”

Eventually, Rosie was discharged but six days later, suffered a massive pulmonary haemorrhage. It was horrific. We managed to get her up to John Radcliffe. Rosie went straight in and we took her up onto the ward. It was a bank holiday Monday, and the ward was relatively quiet. When the nurses saw her, they were just absolutely shocked and horrified to see that she was having this haemorrhage and couldn’t breathe. She was taken straight down into intensive care.

Then she had a cardiac arrest. We were informed that she would need to be hooked up to a machine and put to sleep so that they could try and find out what was happening. We were asked if we wanted to go and say goodbye, and to say goodnight to Rosie, which I did. But my husband David couldn’t manage to, because he was in too much of a terrible state. So I went to say goodnight to her and I said, “I’ll see you when you wake up”, and she answered, “Mummy goodnight, tell Ellie I love her, and tell Daddy I love him.” And that was the last thing she ever said.

All of the sudden, there was a commotion and there were hospital staff running past the door. The consultant came running in and said she’d never seen anything like it. They said that they didn’t think she would make it. Basically, we really lost her at that point but they managed to keep her breathing and they put her on a ventilator. Then we had 11 days of absolute hell because she was on this ventilator, she was completely unconscious, and she gradually faded away. It was so painful. On the 11th day, which was May the 14th, 2003, the consultant told us that Rosie was in a vegetative state, and there was nothing more they could do. We were given the option of turning off the machine. And so that’s what we did, and she died that day.

“Mummy goodnight, tell Ellie I love her, and tell Daddy I love him.” And that was the last thing she ever said.

We were taken to the bereavement room, which was a small office in the hospital. The bereavement officer gave us a pile of leaflets and told us, “This is what you need to do”, gave us a cup of tea and continued to say, “I’m terribly sorry to hear your news”, and then sent us off out of the hospital. And we left the hospital thinking, “Oh my God”. We literally got back on the motorway, driving back without our child – we didn’t know what to do and there was no support in place. I mean, there was a pile of leaflets that told us what to do to register the death, but nothing to tell us about how to survive. Two days later, David had a heart attack from the stress and ended up in Brompton Hospital. He was treated and had a stent put in, and came out the day before Rosie’s funeral.

My promise to Rosie

On the afternoon of Rosie’s funeral, we held a celebration of her life at our school’s theatre in Ascot. I came out of the foyer and remembered Rosie telling me about how she wanted to help the children in the hospital and tried to think of something that we could do to honour Rosie’s wish. We needed to do something so that first of all, Rosie would never be forgotten. The second reason was to make life better for the children in the hospital. We needed a name for this legacy that we were going to create – a charity or something but we didn’t really know what it was going to be. And then I looked out of the theatre door and there was a massive rainbow – a huge double rainbow. I knew that was it and announced, “That’s it, that’s what we’re going to call it. It’s Rosie’s Rainbow”. Rosie had always worn coloured stripes and she always loved bright colours. She’d never been a child who liked pale pinks; she loved vivid and bright colours, and I said, “That’s it – it’s Rosie’s Rainbow.

The importance of having a strong support network

Not everyone can pull themselves out of loss and grief and I saw some horrible endings for some people. I think it depends on what type of person you are in the first place and it’s crucial that you’ve got a strong support network around you. When I was thinking about setting up the charity, an amazing woman came into my life. She basically turned up on my doorstep one day and told me that she was the founder of the Child Bereavement Charity. She had heard that I needed support and she came to offer it to me on behalf of her charity. David didn’t find it very easy and he wasn’t really up for any support at all. He just couldn’t engage and wanted to go and do it his own way, which was not great. But men do grieve very differently from women.

Music Therapy and Parent Support Services

I contacted the hospital and told them that I wanted to help to support the children and their families in any way they could find useful. The lead play specialist at the John Radcliffe suggested something for the children, like art therapy or music therapy. As soon as she said that, I knew it had to be music therapy – Rosie was very musical loved to sing and dance. So we found a music therapist and she was soon running music therapy sessions on the wards – and the difference it made to the children was unbelievable!

Music is a very powerful medium as a method of healing as it can empower and motivate a child who is completely isolated and has possibly even shut themselves off from the outside world. It can also motivate them to get out of bed to start doing things – even if it’s just banging on a drum – it can reduce stress and anxiety, so it’s also used as a way of calming a child before a serious operation. We continued this by setting up some group sessions so that the children, as well as the parents, could actually meet one another because the parents were often isolated from each other as well.

In addition, we set up some bereavement support because there was nothing in place at the hospital. Jenni Thomas came on board to join the charity and became the lead bereavement specialist, counselling parents when they lost their child, as well as many other referrals from all over the country for parents whose children had died.

I’m so grateful to have enlisted the help and support of some amazing friends of mine who became trustees of the charity. Helen had a disabled child named Ella, who Rosie had actually helped to raise money for by doing fundraising shows. We actually used that idea to start music therapy in special needs schools for children like Ella. Eventually, we had music therapy in place for several local special needs schools where we also provided some specialised equipment. And the music therapy spread – our services extended to the Royal Berkshire Hospital in Reading and Stoke Mandeville where they’ve got a spinal injury unit for children. Some of the children were there for very long periods of time, being very frustrated and very frightened because they couldn’t move. So music therapy was a very natural progression and they embraced the opportunity to have us there as well.

However, there was still a need to implement some support for isolated parents. So we found Amanda, who was a wonderful aromatherapist and she agreed to go into the John Radcliffe to support the parents. She also had amazing skills as an ex-midwife, and so she helped a lot of the new mothers who had sick babies. For parents like me who had very ill children, she was able to give them aromatherapy massages to relieve their stress, and also offer some comfort and a listening ear.

This enabled the parents to stay strong, and because they were supported, they were better able to care for their children. It was a win-win situation and Amanda became an absolute lifeline to the parents as not only did Amanda help to relax and de-stress the parents, she also has the ability to get parents to open up and offload. And so she was spending lots of time talking to them – and talking therapy is so important.

How I started to heal

Setting up the charity and being able to help so many children and parents was a healing thing for me to do as well. And now, 18 years later, I’m still feeling that it’s given me a very positive focus, although it will never take the pain away of losing a child. Along the way, I also discovered Reiki while at a spa break with one of my trustee friends. I hadn’t the faintest idea of what it was, but booked a treatment in anyway which had a really profound effect on me. So I became interested in Reiki, and later discovered another energy healing system called Pranic Healing. I found energy work to be immensely helpful from an emotional standpoint – it was very calming and it also helped me to open up spiritually.

I didn’t talk about this to many people, but right from the day that Rosie passed away, we were getting these messages from spirit. And we were getting rainbows literally every time I had an idea. I was either talking about an idea and a rainbow would appear, or there’d be a rainbow and I would suddenly get an idea in my head. I feel like she’s actually the one who is running the charity and I’m just the channel to help her do what she wants.

New beginnings

Shortly after Rosie died, a very strange idea popped into my head and I wanted to have another child. At that point, I was already 47 years old so I put it to bed, but it just kept on coming back into my head and rainbows would appear each time. Eventually, I started seeing quite a few mediums because as a bereaved mum, I was just desperate to get in touch with Rosie. Many of the mediums told me they saw a baby, and this would be after a very long gap. My first thought was that this might be a possible grandchild, but I was told that the child would be mine, and that he would be a boy. So I eventually started an IVF journey which went on for several years enduring many failed attempts. At the age of 54, I finally gave birth to my son Dominic, who is wonderful and has been incredibly healing for me and for our entire family. His arrival marked the beginning of a new chapter. While we will never stop missing Rosie, we know that she is still a significant force who continues to bring rainbows into our lives and to many thousands of children and their families through the work of her charity.

I met Carolyn after she started her new journey with Dominic and I had the absolute privilege of being a part of her charity. Although I could never understand the indescribable and unthinkable loss that she suffered, I know that there are people, like Carolyn, who are able to find the strength to create good from tragedy, grief and tremendous loss. I know that she was guided through her journey (as I also experienced some of Rosie’s magical rainbow moments myself!) but I truly believe that these courageous individuals are our real-life superheroes. Ones that can rise through pain and become dedicated to a mission to serve others in a greater capacity. She has personally helped me to open up to a different, and more spiritual world, and for that, I am forever grateful.

Carolyn is currently writing a memoir that follows the path through the grief of losing a beloved child and the will to survive every mother’s worst nightmare. The memoir charts the creation of Rosie’s Rainbow Fund and the fight for another child despite all odds.

To learn more about the charity, or to donate to an incredible cause, please visit the website: http://www.rosiesrainbowfund.co.uk and follow them on social media using the links below.

Rosie's Rainbow Fund
Rosie’s Rainbow Fund

www.rosiesrainbowfund.co.uk
Facebook: @rosiesrainbow
Instagram: @rosiesrainbowfund

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