Ceryl & Macsen
Could you tell me about the original photographs, where and when were they taken?
My name's Ceryl and the original photograph is of me and my son Macsen and it's in a place in Pembrokeshire called Lawrenny Quay, which is the most amazing place and not many people know about it. I grew up not far from here, for a few years we lived in West Wales and I went to school on the other side of the river. We came exploring one day and found this little quayside tearoom, the does the most amazing cheesecakes and jugs of Pimms if you fancy it! It was great for us because we had three kids in very quick succession and it meant that we could sit on the side and have a sandwich and the kids can play on the beach and go a bit feral, which is what holidays in Pembrokeshire should be about really.
I don't really remember the day of the original photograph because we came here so often, but Macs was a very warm, loving little boy, and a massive fan of hugging everybody actually. We had quite an interesting episode with a lady in a pub in Saundersfoot that we had to move him away from when he was quite young! So, the photograph was my husband Paul saying, 'Give your mum a cuddle', and that was it. Then because we'd taken that one and loved the photo, we recreated it probably about a year to 18-months later, where he's a little more reluctant, and a little bit bigger, but still very warm cuddly little boy. Obviously we both think it's quite funny cos we're both smirking to a degree. It's just such a lovely place and the kids have been coming down here since they were tiny, I think Macs was 18 months old when we got the caravan, so it's just been a massive part of their childhood really.
Could you describe for me what's in the picture.
In the original picture, I think that particular day we'd gone for a walk all the way up around the riverbank, it must have been a low tide or something, and if it's the day I'm think of, Tal, my youngest son had fallen flat on his back, was head to toe in seaweed! It was just one of those silly walks really. Coming back, as I said, Macs was a cuddly child, very tactile. My youngest son is a bit of a wild card, so he was probably off spearing fish or something, my daughter will have gone off as well, but Macs liked to spend a lot of time with grown ups. My husband probably just asked us to stand there to take a nice picture. So yeah, that's him having a cuddle with his mum.
It would have been a sunny day, cos in the original I'm wearing a short sleeved shirt, so in the summer sometime, but we used to come down here all seasons, so the cafe wouldn't have been open all the time, but we would come down for most holidays.
Is it a place you come to a lot now?
No, no. Because we used to come here so often, and we made a point of coming every new year, particularly because in Saundersfoot they do the most amazing fireworks. So when the kids were little, Paul and I would stand on the decking and watch them, but as the kids got older they could stay up later and by the end, I think Macs and I would walk down to watch them together, but the other two were still a bit young. Because we used to spend so much time down here, it got really difficult after we lost Macs to be brave enough to come back. I think in the last couple of years, coupled with the fact that our other children are now thirteen and fourteen, so they do things on the weekends, basketball and netball and football, it is harder to get them to come down without whining about it, just so that we can have a nice time, whereas actually they would rather be with their friends now! So I think the time that we had together as a family down here, that was a special part of our life as a family and I don't think we'll ever get that back.
So you look back very fondly on that time?
Absolutely. We'd come down so often that they'd made friends with children down here, so ever summer they'd meet up with the same group of children and hoof around the caravan park and beach and even that's changed now, because there aren't many families on the site anymore, it's mostly older people, so that dynamic has gone, it really isn't the same from a lot of aspects.
Do you have any routines, places or anniversaries that help you think back and remember?
There's one massive one. Macs had bright orange hair, bright orange. Orange is a very significant thing for us. We picked up on it a lot. I'm not a spiritual or religious person in any shape or form, but it's something that we can still connect with, particularly with the children as well. So even now, we'll still buy orange flowers for the house and anyone who knows me really well will buy me little things in orange. It's not necessarily spoken about, very much, it's a quiet acknowledgement that's around. Some things will be quite quirky, I remember once we went on a camping holiday, everyone had a bit of a meltdown and had a big row. We decided to go for a drive some everyone could calm down and we ended up in Salisbury. We went to Bills, the restaurant, and they had orange flowers outside, and it kind of diffused everything.
There's one other thing that we pick up a lot. He was 11 and 3 quarters when we lost him, so the number 11 has been very significant as well. Looking at your watch or your phone and seeing it's 11:11, the kids pick up on it as well, and it's just something, because we don't talk about him a lot, because it's still very painful.
This year, I found particularly difficult. His birthday was also on the summer solstice, 21st June, he was a solstice baby. I came across Snowdon walks, we go to North Wales quite a lot, and he did too with us. They were doing a walk, so you'd start walking up Snowdon about midnight on the 20th and get there for dawn. So a group of friends and I decided we were going to do it together. Paul couldn't because he had his appendix out this year and wouldn't have been fit enough. When we got to the top, it's bizarre, but hand on heart there was an orange hue'd rainbow at the top. It's little things like that that just make you think really. We loved his orange hair, but when he had a bone marrow transplant in Bristol, I'm sure she was very well meaning, but even one of the nurses said when he was completely bald, 'Oh you want to be careful your hair doesn't grow back ginger!', and I thought, well he started off with ginger hair, so I sincerely hope it does actually! I think it's the last bastion of racism, that you can still openly mock ginger people without a care in the world! That was the thing we liked to embrace really, his orange hair and all the orangeness!
Those little reminders around, do you find them comforting? Does it make him feel closer to you in a way?
Yeah. Like I said, this year has been really hard, I think because all of his peer group are doing their GCSE's, learning to drive, all those milestones that he didn't get to. So, whereas previously it's brought comfort, this year it's made it quite difficult as well. I dunno. You think you're dealing with something, and I don't know what I was expecting, but I think that I kept going so long because you're a mum, I've got two other children and a household to keep going, I kept going and kept going and kept going and it all came to head a little bit this year and I stopped coping with everything quite so well. This year, even five years on, it's hit me worse than it ever has I think, because I put it in a box for such a long time, and put a lid on it, it was triggered this year and the lid came off.
"This year, even five years on, it's hit me worse than it ever has I think, because I put it in a box for such a long time, and put a lid on it, it was triggered this year and the lid came off."
Do you feel like, in that sense, you'd had to give yourself permission to let the emotions come out and feel things?
Yeah, I had to, for the sake of my mental health. I took time off work, which I hadn't done, because I work in quite a high paced stressful environment and if you're not on your game ... if I was working in a florists or something maybe I would have pushed through. It's a bit of a catch-22 with it, because if you're not working, you're not around people which makes you very agoraphobic, because then you don't actually want to go out and engage with people, but it's the first time I've actually gone out and sought outside help I guess. Wanting to talk about him, because I haven't.
Have you found that helpful?
Very much so. Yeah. I've been speaking to a psychologist who's made sense of it all and made me see that even 5 years down the line, it doesn't matter because there's no formula to it all. I suppose it'll just always come and go. I think she's taught me coping strategies to live with the loss, because I wasn't, I wasn't coping with having to live with it. With losing a child, it's not the norm and I don't know whether, I mean, I've not lost a parent, so I've got no frame of reference there, but there's an element of it being the right way around. Even if, because my husband Paul lost his dad quite young, but at the same time, there's an element that the parent should go before the child. It's also quite lonely because people haven't experienced it. You find it quite difficult, even though people want to sympathise, they can't actually empathise because they don't even want to think about that, because that's just the worst thing in the world for most people. As well meaning as people are, they don't want to be in your shoes.
That's a really good point to make. The people that I sought solace from when I lost dad were people who'd lost parents, because I thought they knew how I was feeling. The majority of my friends who hadn't lost anyone close to them, didn't really know what to say and didn't bring it up, so I imagine you're right, the amount of people who've lost a child, regardless of how, is much smaller, so finding the people that you feel can truly understand, or have a sense of what you're going through is really diminished. As you've mentioned, the greatest help for me was finding people to talk about it with but I went to counselling and that was helpful, but I imagine that's infinitely harder when the other person in the conversation is not wanting to talk about it because they can't imagine it possibly happening to them.
Absolutely, they would never want to be in your shoes. Most people probably don't even want to think about how much it would hurt. It's been very difficult as a family actually. As a family, his loss has become a chasm that none of us are reaching across. I mentioned my mum and dad. I was quite ill when I had Macs, for quite a long time and they moved to be nearer us. I also had three children in three and a half years, so they were in and out our lives almost permanently. When Macs was in hospital them as well, they had our other two children, but since we've lost Macs, and whether it's a generational thing, but they don't talk about it, we don't talk about it with them, they don't encourage conversations, so there's this kind of this huge fracture where he used to be.
My brother, a very professional uncle, he lived quite close to the hospital, so he'd come in every day and him and Macs had a really close relationship, he went off. I suppose we all did. We all went in different directions to lick our wounds and we haven't come back together.
I suppose in amongst that, there's this notion that everybody in that situation has lost the same person, but you're all going to go about it in a different way.
Exactly. Macs was the first grandchild on either side, and so they lost a grandchild, my brother lost his nephew, so even though I've lost my child, everybody is grieving for their own loss, and quite rightly or wrongly, I don't know, I don't know whether I should even expect an acknowledgment. I want people to think I feel worse, but is that wrong? I don't know.
I mean, I can't answer that!
I know. Absolutely. It's hard isn't it!
It's so hard, and along with everybody experiencing a unique version of the loss, there's the understanding that there's no timescale. It won't be as it was, but there's no idea of, by this point we might feel ok again, whether that's a year on or five years on, ten years on. Some people will never get to the point where they think life's ok.
And it's not unreasonable to think that! Actually, I don't think I'm ever supposed to get over it. I wouldn't want to. I think that's the wrong word. I needed help to live with it, to live with the loss.
"I've been speaking to a psychologist who's made sense of it all and made me see that even 5 years down the line, it doesn't matter because there's no formula to it all. I suppose it'll just always come and go."
Do you think there are any ways in which, as a family, you could proactively celebrate who Macs was and find a way together to acknowledge him and bridge that gap?
I tried to do that initially. So, the first birthday we had without him I tried to get everybody together, my family and Paul's family. We went to Glastonbury, because we love Somerset, we'd been to the town a few times and Macsen's middle name was Arthur, there's the abbey and my daughter's called Elinor, I just named my kids after Welsh mythology really! I thought it would be a lovely thing for us all together, plus the summer solstice is so important in Glastonbury, I picked this particular house with a view of the tor. Again, I'm not spiritual, so I'm not sure why I was drawn to do that, but I think because they make such an event of it. I don't know whether everybody was still so caught up in their own grief, it didn't work, and again, everybody went back to their own caves, to lick their own wounds and it just didn't work, so I stopped trying. As I said, this year's been particularly bad and I hope I'm coming out the other side and I feel like I need to be the bigger person, to get everybody, to force people to talk about him.
There's no right or wrong way to do that really, but it's good to encourage that conversation somehow, because it's hard to force people into that space.
It is hard to force people, but equally, for everybody's sake, it needs to be done and it needs to be done for my children that are left. At the minute, nobody's talking about him and I want people to talk about him for their sake, so they have memories of him. They were quite young, and people who came into contact with him need to let them know what they thought of him and memories of him.
I'm viewing this very much from the outside, and it's hard to imagine what you and your family has been through, it's incredible really that you're so strong, you're able to function and you've stuck together as a unit, it's quite a feat.
Quite a few of the families that we met in the hospital, they're not still together, and I think it's one of those things, you're either going to come out the other side, or you're absolutely not.
I just can't imagine the strain it would put on those relationships.
"I think she's taught me coping strategies to live with the loss, because I wasn't, I wasn't coping with having to live with it."
Could you tell me more about Macs?
He was the first grandchild on both sides, and the oldest of three children. Even between my oldest and youngest there's only 3 and a half years. He took being a big brother really well, there were never any jealousies, they really were a proper little gang of 3 and they all got on extremely well. He had quite an old head on his shoulders, he was extremely thoughtful and very kind. Don't get me wrong, he could be a whining little tosser, cos he was still a child obviously, but he was really kind and really thoughtful. He had a brilliant sense of humour, he got sarcasm at about 18 months old. He was really funny, and also quite a geek, so even now, I'm finding tins about the place, where he would have collected shiny looking stones! He loved anything shiny, shells on the beach, he had little collections of things everywhere. He had a bit of a hobby, he liked collecting mineral stones, quartz and things like that, and then the next thing he'd be fascinated by astronomy, so he had a telescope and he needed to know everything about that. He liked collecting things like playing cards, Pokemon, all those silly things, so many boxes! I think he would have grown up to be quite a hoarder actually.
He also loved nature and things. He and my dad had a very close relationship because they'd go off walking together. He loved history and things like 'Time Team', even when he was six and seven he'd watch it, but he wasn't a geek in the sense that he didn't have friends or wasn't popular, not in a negative way. He was very comfortable in his own skin, he knew what he liked and he had friends who were also interested in what he was interested in and so he was happy with that. He never wanted or tried to be popular exactly. He was happy with his lot I think, genuinely. Quite content. As it turned out, all through his diagnosis of leukemia, and his bone marrow transplants, we and the doctors asked a lot of him, and he was really actually uncomplaining and stoic. Just very stoic.
It sounds to me like he had a real fascination with the world around him.
I can relate to that, finding stuff as a kid and thinking it was special for some reason.
Yeah, enough to put it in a box! He must have got it from my dad, cos I remember when I was growing up, I used to find matchboxes with things like a mouse skull in it! He would have been on a walk and found an owl pellet and dissected it, put it in a matchbox and left it in a drawer. I think him and Macs had the same tendencies!
Well you just don't know when you might need that some day!
You really don't!
What was it like when I asked you to find a photograph?
I have got hundreds, probably thousands of photographs of Macs, thank goodness, because you don't realise until they're not there anymore that those things are so important, but not very many with me in them. I love photography, I don't love photographs of me, and I had a really fantastic camera, but I didn't trust anybody else to take decent photos on it! So as a consequence, I don't have that many photos of me and Macs, but I immediately thought of that photograph actually because I made him recreate it. Coming down here, is most of the childhood memories really.
What was it like today, re-taking it? Being back here?
I think earlier on in the year I probably wouldn't have been able to do it, but I do feel like I'm coming out of a fog, somehow. We haven't actually been to the caravan, maybe only a handful of times in the past few years, from coming all the time for various reasons, we really haven't been back. The children haven't really wanted to, they haven't enjoyed it as much, because there are so many memories here. Apart from the tearoom not being open, it's been really nice to come back actually today. Paul and I stayed at the caravan last night without the children and it was lovely actually. So maybe, again, it's something we need to do more often, because it would be a shame not to come here just because of avoidance of memories, feelings and what have you. It is such a beautiful place.
I know it's terribly hard, but feeling able to engage, coming somewhere like this, somewhere special is important. We talked about it earlier with regards to family, it's hard to force it, but over time if you can find a reason to engage with the places, the occasions, the things that he was interested in, that helps ease you in. It might not be a black and white conversation about it, but you're allowing yourself into that space, that realm a bit?
Yeah, absolutely. I don't to be selfish about it because all of a sudden I've decided now the time is right, but it's been five years, and so, to avoid it altogether in that time, I can't let it go on much longer actually. None of us know if we're going to be here tomorrow, you just can't rely on it. I want the memories of him to be talked about. I don't want to avoid it anymore, and as hard as it may be, we all miss that person. So, I don't understand why we haven't talked about it for all this time, if we're all sad because of that one space, it's not fair, for him and his memory that we've made such a ravine of it. Does that make sense?
Yeah, it absolutely makes sense. I think that finding those reasons to celebrate him, anniversaries, birthdays, going up Snowdon!
That birthday, that event, was the first time I really felt like I'd done something amazing and something for Macs. I didn't do it for charity, but it was amazing and the people that were there with me.
"It's also quite lonely because people haven't experienced it. You find it quite difficult, even though people want to sympathise, they can't actually empathise because they don't even want to think about that, because that's just the worst thing in the world for most people."
Was there anything else that you wanted to say?
The book, 'The Unlikely Pilgrimage of Harold Fry'. It talks about grief as being this gaping hole, that initially you keep falling into, but over time even though the hole's there, you're not filling it up, you're not paving over it, but you do learn to walk around it. I've remembered that, even though at the time I was probably in the hole, thinking I was never going to get out of this. But this year I had to ask for help to get out, and it has made a difference. I think, people don't talk about death, people talk even less about the death of a child, but it's so important.
Do you feel like you're on your way out of the hole? Or out of the hole?
Yeah, I hope so. Yeah. I'm not going to think for a minute that I won't fall back in, but I won't fall in as far, because hopefully I'll be able to stop myself on the way down. But it has been a bit of a milestone year for all sorts of reasons.
It's funny, I am going to get upset saying this. My brother, not long after we lost him, and again, my brother is not religious or spiritual or any of those things, but Macs was such a different child. He said, 'I do feel like he was an angel and that we were only supposed to have him for a short time'. Which is, you know, it's a nice way to look at it I guess.
I suppose part of that process of the grief is being able to acknowledge and be glad for the time that you had together?
Absolutely. Yeah, he was trying to make sense of it, and if he can make sense of having him for a short while, as hard as that is, then that's lovely.
We had a humanist ceremony for him, and he's buried in a natural burial ground as well. I don't know whether that was me not wanting him to go to somewhere like a cemetery, I wanted him, because he was so interested in nature and everything else, to be somewhere where the children that were left wouldn't feel intimidated by or think of as a depressing place. I'm not judging anybody whose relatives are in cemeteries, I'm really not, it just wasn't right for my 11 year old little boy. I think, when you're at that point, you have to do what works for you, even if it's not necessarily the norm as such. I think it's important to do what gets you through the day and you think you can live with afterwards. Even now, we went back there, well it would have been 5 years ago on Tuesday that we lost him, and it's just a beautiful place on a hillside above Cardiff. When I first had Macs, we lived in my parents house just outside Cardiff and you can almost see the house, and on a good day, you can see practically out to sea. That's important, that it's somewhere that the kids can go and be. We haven't quite got to the point where we go regularly. I did think at one point that we'd have a picnic there or something, one day.