Toby was nearly 3 years old when his dad, Tim, tragically died in a collision on his beloved motorbike and another car. It happened on 2nd January 2014 in the afternoon, on a sunny but damp day, I received a phone call from Tim’s wife to tell me of the shocking and distressing news. It would go on to alter both of our lives which was totally unexpected. I found it hard to know what to do when telling Toby as he had no understanding of death so I felt I had to get on and deal with the bereavement on my own being the strong mummy. Toby did not really understand what had happened and didn’t really seem very effected by it as he was quite young but I knew it would be only time before he would start too.
As expected, Toby grew older and started school, it came about that he started to realise he was ‘different’ as he did not have a daddy around anymore. Toby started to question me more and I knew he needed more support with helping to understand death. We have relatives that use the amazing Simon says charity, so I contacted them and started to attend the Chandlers ford group.
Toby loves going as he can express himself and make crafts or has usually done an activity to show me. I feel he is really happy to go each month as he is surrounded by other children that have also lost a special person so he doesn’t feel so isolated from such a life changing event.
I honestly feel Simon says is extremely beneficial to Toby and I can get advice, in the adult group, with any aspect that helps deal with the parenthood that comes alongside him being bereaved. They are an incredible support group and all the staff are sensitive and understanding and I want to say Thank you for the crucial support that Toby and myself have received.
My husband Jason was diagnosed early into our marriage (1st anniversary – we had been together for 11 years), with a shadow on his brain which turned out to be a brain tumour. He spent 8 years in and out of hospital having treatments and operations and finally lost his battle in February 2010 leaving me and our 7-year-old daughter.
I sat down with the yellow pages to try and find some help with how to tell our daughter that Jason was dying. I found Simon Says, called the helpline and spoke to a brilliant volunteer who gave me the help and advice I needed at that time and later when he had died.
We first attended the support group in March of that year. I needed help with how to answer some of Leah’s questions, I didn’t know what to say when she asked “why me”. It was difficult for her at school when other children were being dropped off at the gates by their Dad’s and her thought was “my Dad can’t do that now”. She felt very isolated at school.
At Simon Says she found a connection with other children who were in a similar situation. I remember at our first session that Leah wore a blue badge to show that her Dad had died and her saying “see Mum, there is always someone worse off than you”. There was another child there with a red and blue badge because both parents had died.
We still dip in and out of the groups as and when Leah needs the support. She gets her grounding from Simon Says. She isn’t different to anyone else there; she can be normal. When life has its ups and downs she asks me if she can go back.
As a parent it was great to meet other families coping with the same thing. To see how they are building their future on their own and in some cases, like me, as a single parent. To begin with I felt inadequate without Jason and worried that something might happen to me. I still have those feelings sometimes but being around others helps. All the families give strength and support to each other to go on. We are all at different stages of our bereavement, you get to see that every journey is different but that we are all coping and it gives you hope that one day you will be able to help others as you have been helped.
After a while of going I became the one to help the new families and buddy with them which has led on to my volunteering now for the Charity. It has been a natural progression for me and I want to give something back. I remember Leah asking lots of questions just before bedtime, I thought she was just putting off going to sleep but I soon realised it was her time to process what had happened. I started taking her up to bed 10 minutes earlier and then answering all her questions as honestly as I could. This helped her get to sleep. Soon after volunteering another family raised the putting off of bedtime as an issue. I was able to draw on my experience and help.
We all have the same issues, same behavioural concerns and emotions just sometimes in different ways. It helps knowing it is normal and puts your mind at rest.
I have found it eye opening being a volunteer. Often what the parent thinks the child is feeling or experiencing is different to the reality. I have heard parents saying their child is bottling up all their feelings but then go and sit with the child who is happily sharing their story whilst making a memory jar or other activity. It is difficult as a parent because you think they should be talking to you, I realise as long as they are talking to someone, it doesn’t matter.
The volunteers are great at putting things in perspective, I have found the support invaluable. If I could give a nugget of advice I would say – At the time you feel like you are drowning, Simon Says is the life vest that keeps you floating. There is help out there.
I would like to thank Fiona so much for sharing her story. Fiona has now joined the Board of Trustees to be the Family / Volunteer voice.
Clare’s husband was diagnosed with cancer and died leaving Clare and her two small children aged 3 and 5. Clare contacted other charities and was told that they couldn’t help children under the age of 5.
Sainsbury’s had Simon Says as their charity of the year and one of Clare’s friends picked up a leaflet and handed it to her.
Clare was concerned about her youngest daughter who may have seen her father die at home, Clare didn’t know what she had seen nor how it might have affected her. She also wanted some guidance on how to talk to both her daughters about her husband’s death.
Clare contacted the Simon Says helpline and was given advice on how to handle the immediate situation but also recommended the monthly support groups.
The three of them attended the support groups for over 2 years.
“We made really good friends, it was helpful to be with other people that had been through the same thing, we weren’t on our own. Some of the parents would talk about their situation and how they handled it and then others would chip in with what had worked for them. We learnt that we can’t change what has happened but have to learn to live with it. It helped us come to terms with our loss and gave us hints on how to handle it. It was a bit like joining my first mums group. I could talk to them about common experiences and they would understand unlike my friends who hadn’t had children.
For the girls, it also allowed them to be around others who had been through a similar experience, they suddenly didn’t feel so alone. My eldest said “I wish some of my friends had been through the same as me so they knew how I felt”, I told her that she didn’t really wish that on them and she agreed but it was lovely for her to make new friends at Simon Says who did understand. They loved the sessions on anger, learning it was normal and how to deal with it. They also learnt that it was ok to be happy, they don’t have to be sad all the time. It helped support the messages that I had already been giving them at home but now they were hearing it from someone else too.
We haven’t been for a while but my daughter is now 11 and we are considering going to YPG (Simon Says Young Persons Group for 11-17 year olds). She has had some changes in her life recently, like moving school and needs the additional support.
It really helped me to meet others who had lost someone and I am now able to help support others in a similar situation. Thank you, to Simon Says who helped us come to terms with our loss and to the friends we have made along the way.”
Clare now volunteers for the Charity.
Ryan’s story – Service User and now Volunteer and Ambassador for the Charity
Ryan was 7 years old when he learnt the devastating news that his father was terminally ill with cancer. His mother had heard about Simon Says and signed Ryan and his younger sister up to one of the groups.
Ryan attended group on and off for the next few years, as and when he felt he needed support. He particularly needed it when he turned 12 / 13. It was a difficult period in his life, along with the added pressure of his bereavement.
“The groups really helped me, particularly with anger management and emotional support. At the time I found it really hard to talk about things and instead bottled it all up. I didn’t want to upset my mum or my sister by talking about how I felt. Simon Says helped by showing me how to write my feelings down and put them in a feelings box. My mum would then read them but wouldn’t talk to me about it, it helped her understand how I was feeling but without me having to open up to her. Mum then understood what I was going through and we were able to talk about everything and eventually the box disappeared.
The other thing that really helped was the anger activities. I had no control over my emotions and wanted to explode sometimes and didn’t know what to do. Simon Says gave me a channel for my emotions so I could release my anger in an effective way and not hurt anyone. I learnt not to hurt myself and others, instead using a pillow I would scream into and punch. They also talked to me about walking away and counting to ten, breathing slowly, going for walk or a run. I managed to take control.
Simon Says helped me growing up and coming to terms with my loss. Now I want to help them and give something back. Volunteering continues to help me and I like helping others. I had a choice years ago of which path to take, I would have taken the dark, negative path but instead I accepted the help and used it, I took the path to being a better person. I have really positive energy now and know I have grown into someone my Dad would be proud of.”
In 2011 my husband Pat was diagnosed with terminal brain tumours. From day one we knew it was a fight he wouldn’t survive but he kept positive and made plans for us. One thing Pat couldn’t plan for is how the girls would cope with losing him and if there would be support for them. He constantly worried about this.
After Pat passed away on 26th June 2014 the girls needed the help Pat was worried they wouldn’t receive. A friend put us in touch with the child bereavement charity ‘Simon Says’. The girls started to go along each month to their group and through activities they face what has happened so they can come to terms with it. Each month they may have little setbacks but the group seems to pull them both up again and each month they seem a little stronger. It’s amazing as to what they have achieved during this time!
As a family we have been able to do the things Pat wanted us to do and visit some amazing places. Without the support ‘Simon Says’ has given to the girls some of this would have been impossible to do.
My name is Niki and in 2012 my husband was diagnosed with a grade 4, inoperable brain tumour, the prognosis was not good, initially 6-12 months. Dave battled the cancer and died in July 2013, seventeen months after diagnosis.
During his illness our daughters, Millie and Alice (then aged 5 and 7) received support from the Social Worker at our local hospice. However, after his death that was not the sort of support that the girls needed, they needed to know that they weren’t the only ones this had happened to. They felt isolated and as if there was something different about them. In November 2013, we found Simon Says and the road to recovery started for them and in a different way for me.
Simon Says made them feel normal, they were the same as the other children there, no one treated them differently. For me I was able to talk to people further along the road, get advice on how to deal with both mine and the children’s grief, learn about the many and varied stages of the grieving process and learn that everyone’s experience of grief is different and what you think will be right for your family generally is.
Enough from me – Simon Says is all about the children and this is what my girls have to say:
My name is Millie and I’m 12. I was 8 when Dad died. The way in which Simon Says made me feel normal, was that the second I walked through the door there were others like me, with missing dads, mums and grandparents. The thing that made me happy was that no one said “Ahhh, I feel so sorry for you” because the thing that always got me was what is there to be sorry about? The people that said it had nothing to do with it. I have just started YPG (the older children’s group) I have really missed all the little kids but apart from that the older group is just as good, if not better. One of the other amazing things that Simon Says arranges is The Big Weekend. Me and my sister both love this weekend. We love the chance to do team building challenges with new and old friends. We also get lots of bereavement work done as well as a movie showing a passionate message the last 3 times we have watched Up (twice) and Eddie the Eagle. I have a strong bond with certain volunteers as they are really supportive. I really love Simon says!
My name is Alice and I am 10 years old. I love Simon Says because I feel normal when I go there and it seems easier to make friends because when I tell my school friends about what happened to dad they go all soft on me. But then with Simon Says I could make friends and when I tell them exactly what happened to Dad some even said they went through the same experience. When we come in everybody writes a label with their name on it and in a specific colour for who died. My friends tell me that it’s ok to cry and that it’s not only me but I already knew that, but kept things bottled up. So, when I started Simon Says it was a big change and to begin with I used to get quite upset and that was because I never talked about it. Before Simon Says I was so sad I would just hide in the school toilets reading. But after Simon Says I feel comfortable to talk about it to anyone without feeling upset. At the end of a year everyone meets up at the Marwell hotel to have a Christmassy party with games, music, craft and a visit from Santa Claus! I love it!