When the Unthinkable Happens: Life After Child Bereavement

When the Unthinkable Happens: Life After Child Bereavement

Content note: This episode discusses child bereavement and childhood cancer. Please listen gently and take care of yourself, or choose to come back another day.

I was worried about this episode.

Worried I'd say the wrong thing. Worried I'd upset Nici. Worried I wouldn't do Nici, her family and Charlie the justice they deserve.

I don't think I'm alone in desperately wanting to support parents who have experienced the trauma of child bereavement, while also worrying about saying the wrong thing.

Nici Robinson joins me to share the story of her son Charlie, who was diagnosed with a brain tumour at just two years old. After three years of treatment, Charlie died in 2021.

Together we talk about what no parent ever expects to face.

I'm in awe of Nici as she speaks so honestly about the guilt, the loneliness, the impact on her marriage and children, and the reality that grief doesn't simply disappear with time. She also shares how she has learned to live alongside it.

Out of unimaginable heartbreak came purpose.

Nici founded Blue Bear & Co, creating sensory memory bears that hold voice recordings, scent and a heartbeat, offering comfort to families experiencing loss, separation and change. She also established the charity Thumbs Up for Charlie, helping families affected by childhood brain tumours create precious memories together.

This episode is heartbreaking, hopeful and full of compassion. I'm incredibly grateful to Nici for trusting me with Charlie's story and for helping me reach parents who might desperately need to hear this conversation right now.

If you've experienced grief yourself, know someone who has, or have ever wondered how to support a bereaved family, I hope this conversation helps.

Find out more

Blue Bear & Co – Learn more about the sensory memory bears or donate a bear to a family who needs one:
www.bluebearandco.co.uk

Follow Blue Bear & Co on Instagram:
@bluebear_and_co

Thumbs Up for Charlie – Find out more about the charity supporting families affected by childhood brain tumours:
www.thumbsupforcharlie.co.uk

Derian House Children's Hospice – The children's hospice Nici speaks about in this episode:
📱 Follow Derian House on Instagram

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Transcript

Welcome, Sponsor, And Content Note

SPEAKER_00 0:00

Welcome to the Antypical Parent Podcast. It's a podcast of parents in additional needs families. And I'm your host, Liz Evans. This is the place to find your reassurance that there is no such thing as a perfect parent. It's here to make the hard bits feel lighter and the good bits brighter. Just quickly before we get started, are you looking for practical ways to support a child experiencing school anxiety? This season I'm delighted to let you know that the Untypical Parent Podcast is sponsored by Terry Wise from Wise Inclusion and Rachel Helm from Helm Education Consultancy. They are experts in inclusive education and supporting children who struggle to access school. Together they run webinars and workshops to help parents and schools work together and improve outcomes for children experiencing emotionally based school anxiety. If you're supporting a child struggling with school attendance, check the link in the show notes to find out more about how Terry and Rachel can support you. Thanks for being here. Let's get started. Hi and welcome back to the Untypical Parent Podcast. I am going to put a content note on today's episode. We will be discussing something that will be every parent's worst nightmare. And I just want to make people aware that we'll be discussing child bereavement and that to listen gently and with care. And if you decide today's episode is not for you, that is okay. Wait till another time, you come back at another time, it will stay on the library. You can always come back. Or if you decide it's not for you, that is equally okay. It is a really hard topic to cover, I think, but equally a very important topic. And I think it's something that we do need to talk about. And I have got with me the very lovely Nikki Robinson has come to talk with me today on the podcast about her own personal experience of the loss of a child and where that has taken her. Journey always feels a bit, I don't know. I like the word journey, Nikki, but you know what I mean. It is that is a journey we go on, isn't it? And the process and what you've been through for you personally, but also for you as a family. Nikki obviously is coming on to talk about something that has been incredibly difficult for her family and for her. I really appreciate you, Nikki, coming on and sharing that what must be very, very difficult. I know you have a very strong drive to share your message and to be able to get out there to more parents that might have been in the situation that you have been in. So, Nikki, welcome to the podcast. That was a long intro. Welcome to the podcast.

SPEAKER_02 2:49

Thank you for having me.

SPEAKER_00 2:51

Total pleasure. So Nikki reached out to me and asked about coming onto the podcast, and I immediately thought this is a conversation that we need to have, and we need to have it out there so people can hear it. Nikki, tell us a bit about the story behind. So you've got a company called Bluebear and Co. But that's come from somewhere, a very personal story to you. Can you give us a bit of a the the backstory to what led to that?

Charlie’s Story And The Reality Of Grief

SPEAKER_02 3:20

So in June 2018, my son, my middle son, Charlie, um, he was diagnosed with a brain tumour. And he went through three years of treatment and sadly we lost him in 2021. And there is nothing, absolutely nothing, that can prepare you for the loss of a child. That hearing that diagnosis, the the devastation is unbelievable. And he was the most inspirational, the strongest, most resilient and courageous little boy ever. And he really is my inspiration each and every day. And after we lost him, uh you you trained, I suppose, to find purpose because in that three years, not only was I a mum to a, you know, when Charlie was diagnosed, I had a nine-month-old baby, I had a four-year-old son, and Charlie was two. And, you know, your whole world is shaped when you become a mum by being a mum. You know, I worked as well, but I was actually on maternity leave at the time, and I was due to go back to work. And the treatment was, you know, it over the course of three years he had several major operations that severely impacted Charlie. Um, so he had to learn to walk again. He had to learn to talk again, he couldn't swallow fluids, everything had to be thickened. Um, you know, nobody you you don't ever really know what you're going into or what the impact of a brain tumour is gonna be on your child, but you live in hope, and that hope is what gets you through each day. You want to be there for them and you want to try and be strong for them, and you know, you smile for them and just kind of try and remain, you know, as strong as possible in that time.

SPEAKER_00 5:34

Um nothing that anything you could ever prepare for, is it? You don't you don't set off in your life as a parent thinking that would ever happen to you. No, never in a million years.

SPEAKER_02 5:46

And you know, it's really even now sometimes when I'm talking about it, I kind of feel like I'm almost removed from it because I think that's how I've almost protected myself because it's yeah, it it is quite unbelievable um still to this day. Um, but then you've got to try and for me, I had to then try and turn that pain into purpose. So we set up a charity um in Charlie's memory, thumbs up for Charlie. And on his second anniversary, I desperately, desperately wanted something that I could hold on to, something that was tangible, something that I could share with his brothers. And it was really hard to find exactly what I wanted. You know, things that were on the market, you know, the personalisation process was really impersonal. And then once the batteries fail, that that Teddy, that gift became meaningless. And so I just thought, you know what, I can't be the only person that wants something to hold on to, something that's a constant reminder, something that smells like that person or a special memory or a moment in time, and to be able to hear his voice, and also I wanted to have like the sensation of a heartbeat so that when you hugged it, yeah, it kind of really mimicked a real hug. So that this is how Bluebear and Co. came about because I decided, right, well, I can do this, I'm gonna do this. And at the time, my husband's thinking, right, she's having another breakdown, what is going on.

SPEAKER_00 7:28

But and I read on your website that actually you having had no sewing experience through YouTube videos, then you made your own one. Yeah.

SPEAKER_02 7:41

I literally that day went to a local textile store, bought a load of fabrics, had no idea. I'm terrible at even sewing a button on, you know, like my mum will do the sewing for me, that's how bad it is. And I just thought, you know, when you really just get the bit between your teeth and decide I'm gonna do this, started watching these, you know, these YouTube videos. And literally within a day, I'd made a teddy. It it within a day, the same day I'd made a teddy. But I didn't stop, you know, like just going for it, like I'm slightly woman-possessed. Um but yeah, and and it, but it really just, I don't know, it it just created something inside me and it gave me purpose, this purpose again, and and it in a way made me feel closer to Charlie. I felt like I was doing something for him. I thought I was felt like this could be something that would really help other families, that would really help other people. And Charlie from birth had uh a blue bear. He called it blueberry. And it it literally, you know, you know, some children have a comfort blanket, some have a dummy, some might have, you know, a a teddy, and his was a teddy. And throughout all of his treatment and each hospital trip we went on, every surgery, that teddy never left his side. And so hence the name bluebear and co. And especially why it was so meaningful for me to create a

Building Bluebear And Co From Loss

SPEAKER_02 9:20

teddy, because that's what he had by his side.

SPEAKER_00 9:23

Yeah. So you as this kind of led to you creating bluebear, but actually you've got a background as a therapist.

SPEAKER_02 9:34

Yeah.

SPEAKER_00 9:35

So you've worked with and do you think that kind of it's really hard, isn't it? I think because when we are therapists, and I'm an occupational therapist, when we work with people and and young people or parents or adults, whoever it is, you know, I think we go into work mode and we can support those people through those those challenges or differences or whatever's uh going on for them. But often when it happens to us, it's very, very different. Did it did it help at all, Nikki? Would you were you able to pull from any of that or did that all kind of go out the window?

SPEAKER_02 10:09

I think there is a period of time where it all goes out of the window. I think with grief or with mental health or depression, when you're in it, you are in it, and you can't see the wood for the trees, and I don't think it matters what kind of professional you are, what your experience is. It is all consuming. And and I had a breakdown, you know, it literally wiped the floor with me to the point where I could not get up in the morning. And for anyone who knows me, I am a doer. That is how I cope, I go and I do, because that's I need the distraction, I need the focus. Um, but sometimes that is to my own detriment as well, and then I burn out. Yeah. So I think where it does help is that as I've sort of learnt to live with my grief, I am better at recognising signs and symptoms now. Um that doesn't mean it works every time. You know, I can still fall on that slippery slope and get stuck. Um, but I am definitely better at listening to my own body and, you know, my responses and being more attuned to myself. But it's it's very hard. Very, very hard.

SPEAKER_00 11:36

And grief's a really difficult thing, isn't it? I think everybody probably deals with it in different ways. There's probably no right or wrong um way to deal with it. Um But also I think when I was thinking about coming on and chatting with you, I thought actually do we don't talk a lot about grief, really? I don't know whether that's us as a you know, as Brits, I don't know, or whether that's kind of I wonder whether other nationalities or um either communities would talk about it in a different way. It means different things to them. But I think we don't talk about it a lot. And I think when we were coming on, I started to think, oh I feel a bit anxious about coming on. I thought I can't think why I feel worried. And I thought, right, I've got to explore this because that's me. Why do I feel worried about coming on and talking to Nikki? Because Nikki and I have spoken before, and I thought, I'm worried, I'm worried about how to make this okay, how to talk to Nikki about this. And I think I can't imagine that I'm the only one that thinks that. That actually, you know, how do you talk to somebody that has lost someone very, very important to them? And I suppose what we tend to do is just go, I'll just ignore it, I'm just not going to talk about it. What what was your experience with that? Did you find that people kind of shut down and kept away from you, or did they did they talk to you? And what did you want in that moment?

SPEAKER_02 12:59

I think I am very lucky. I am very, very lucky to have a really supportive network of friends and family and a really positive community around me. However, I think grief and particularly childhood grief is especially difficult for people to talk about. I think they are terrified of upsetting you, of saying the wrong thing, of their own fear of childhood grief.

SPEAKER_01 13:29

Yeah.

SPEAKER_02 13:30

And so I have friends that I will go to and I can sit and I could talk all day long about Charlie and they would listen. And we laugh, we cry, and they are my go-to. I have other friends who I accept it's more difficult for them to talk about. And I think what my advice would be is just to always never be afraid to mention that person that they've lost because everything I do, whether it's blueberry and co, whether it's thumbs up for Charlie, what whatever it is, it's always about keeping Charlie's memory alive. That's my way of being able to share his story. That's my way of you know of talking about him and keeping him with me at all times. And I think there is nothing nicer than when someone says to me, Oh, do you know I was thinking about Charlie the other day, or I remembered that time when, or you know, that for me means more than anything because he was here and he was a part of our family and is still a part of our family, and he was such a big part of our community as well. Yeah, yeah.

SPEAKER_00 14:48

And it's easy that I think, isn't it? I think that people will easy's the wrong word, but I think through you, like you say that fear and it's done from a genuine, you know, place, I think, that they don't want to upset you, is that I think initially when it happens, you get a lot of support, and then I think people think I don't know what to do anymore. So they kind of disappear off into the background, and then you're left in that kind of what you know. My experience of of grief is you're kind of left in that limbo-y feel of I'm still really struggling with this, but no one wants to talk about it. I need to talk about it, and yeah, I might get upset, but that's okay.

SPEAKER_02 15:25

Yeah, and I think that is definitely the hardest, yeah, hardest place to be when you are stuck, and I mean really stuck, and you feel on your own. It's that it's a loneliness like no other,

How Families Cope, Talk, And Remember

SPEAKER_02 15:40

because you're trapped in your own thoughts and you're struggling, and you want to talk to people, but you don't know who you can talk to, or you you you end up feeling like, well, I don't want to upset people sometimes, which is crazy. Um and and even like my husband, my husband's amazing, you know, like we we do talk, but we grieve differently. So, you know, like he is very purpose-led as well, but he kind of doesn't he's probably not as emotional as as me and as deep thinking as me. Um, and so you know, that that can create conflict sometimes. Yeah, but and it's how you then navigate that, and and it's very hard, you know. Um what one's saying that I actually hate is that it gets better in time. Time's a healer. I hate that because it's not true. It is not true. It it doesn't get better in time, those anniversaries don't get easier, those birthdays don't get easier. All that you you can do is you find ways to live with it. Yeah.

SPEAKER_00 16:55

Yeah. And I was just thinking about in all of that, you know, when you're going through something as as traumatic, I can imagine, you know, very traumatic as as for a family, but also you know, for you as a mum, is that you're trying to find your way through. And then as you said, you've got two other kids around at that time and a husband. You know, how how as a family did you get through that, Nikki? How did you move round it through it?

SPEAKER_02 17:28

It's it's really hard, even when I look back, sometimes it is all a little bit of a blur. Um I think I carried an awful lot of guilt. Um, you know, I I felt like I couldn't save my child. I felt guilty that I'd literally had to abandon my nine-month-old baby and my four-year-old child. And for months at a time, I didn't go home at all. I stayed with Charlie. Um, although I knew that they were safe, they were secure, they were with my mum, they were with their dad, they were at home, they were still had their routine. You know, I wasn't there. And I had to to make that choice because for me, I didn't know what the future held for Charlie, and he had to be my priority. I had to know that I'd done everything in my power to be there for him. Um, so I I lived with a lot of guilt, um, and that can be quite destructive. You know, guilt is a really horrible emotion to feel because it actually doesn't benefit you in any way. But when you are in it, you know, everyone has heard of mum guilt. We all experience mum guilt on varying levels. Uh, but yeah, it and then the the feeling of failure, you know, and the when when you're feeling quite depressed or quite low and you're feeling anxious, and it it's really hard to navigate that and to yet still try and be there as a mum to support your children and keep your family together.

SPEAKER_01 19:01

Yeah.

SPEAKER_02 19:01

Um, and I think it it has been a really hard journey, for want of another word, but um yeah, and but I do feel we are coming out of the other side and we are a strong family, and my uh Charlie's other siblings are very, very resilient, and they've had support, I've had support, you know, counselling, and and I think you know, it's it is just finding ways to be able to to cope with all of you and you all cope in different ways. Yeah.

SPEAKER_00 19:42

Did you have to s did you have to support the kids quite a lot to cope? You know, to f to find those strategies or to kind of kids find their own strategies. I'm kind of curious how that happens as a family, I suppose.

SPEAKER_02 19:56

Well they all cope very differently. So ha he he has memories of Charlie, but they're kind of like his little memories, if you know what I mean. Yeah. He will he would frequently talk about Charlie all the time. Yeah. And that was really lovely for me because it was almost like Charlie had never left. Uh and but he didn't have this like sadness that I had, not the same sadness. I think as he's got a little bit older, I I recognise now he probably feels it more because he's sort of processing it now. He's only just, I think realising what actually happened, you know, now when he talks about Charlie, it's kind of trying to get his head around why did it happen. Yeah. Um was at a different age and he kind of had more understanding of what was happening, but he he's not a big talker. So he keeps it all in and he would display his emotions in other ways. You know, he became quite anxious at times to the point of I couldn't take him to his football training or a football match without him being able to see me. He had to see me all the time. He could not like you know, like you you jump out of the car to pay for your petrol. It I he couldn't stay in the car. He could not stay in the car because he couldn't see me. He couldn't, I couldn't go in the shop to run and get like uh some milk or something. So that was quite difficult at times, kind of trying to understand that. Particularly, you know, when you are when you're grieving yourself. Yeah. It it is a minefield. And then you kind of I'm like, I should know what to do. I'm a therapist, I've been doing this for like 16, 17 years. How do I not know what to do? But it is very different when it's happening to you and your family. But yeah, we you know, they both had support and they're they're incredible, actually. The strength and resilience they have. Yeah. They are incredible. And we continue to talk about Charlie, it's just been his fifth anniversary. Yeah. Um and for me, I need to remove myself. So we kind of went away for a few days. We went somewhere local, but it's what I call my happy place. So it's like just being outdoors, just being in nature's really wholesome. Um, we had we surrounded ourselves with family, friends came to visit. It was my daughter's birthday, and then it was Charlie's anniversary. So it's like celebration, but also a term of remembrance. Yeah. We set off lanterns, we do that kind of thing, we do balloons, we write messages, and we talk about Charlie. And for me, I've I've found that I have to almost I've made a promise to myself and I've made a promise to Charlie and to his siblings that I will always try and do something purposeful on those dates rather than letting it consume me because I've been there where it's consumed me.

SPEAKER_01 23:14

Yeah.

SPEAKER_02 23:15

And it it it all it does is exasperate that guilt again and that feeling of failure. You're letting your other children down again, you're letting your husband down again, you're letting everybody down. And I don't want to be in that, so I have to try and channel it in another way.

SPEAKER_01 23:31

Yeah.

SPEAKER_02 23:32

So I actually did do a skydive. You know, just I heard this, I saw this the other day. How did it go? It was amazing. I loved it. I really loved it. I think for those few moments that you're up in the sky, I actually felt really close to Charlie, which was lovely.

SPEAKER_01 23:51

Amazing.

SPEAKER_02 23:52

Yeah, so that that was special. So yeah, so that's how I kind of get through it by focusing on something and trying to do something positive or just being with my children or my family.

unknown 24:04

Yeah.

SPEAKER_00 24:05

Is there a lot of support out there, Nikki? Is there a lot of you know, I presume I don't know whether you kind of came across hospices or places like that, you know, I I I hear there is support out there, but I've no idea how much and how easy it is to come by and find.

SPEAKER_02 24:20

The hospices, the local hospices around here, I obviously I only have experience of those, but it they were phenomenal. Um it was Derien House that supported us. So when we found out that Charlie um had relapsed again and that there was um no further treatment that they could provide, Derien House got in contact

Hospice Care And Why Sensory Bears Help

SPEAKER_02 24:45

and we had the option whether we went into Derien House and they supported us there, or they have the at home, in-home community um nurses who supported us to actually care for Charlie at home. So the whole time he was surrounded by his family, by his friends, they came every single day. If there was ever a problem, there was always someone on call to ring. Um, and honestly, it it wasn't just the practical support, but it was the emotional support as well. Preparing us for every situation, just being on hand, just being a shoulder to cry on, you know, even making a cup of tea. Just it it was just incredible the support. Um, and then afterwards, there is support there. We probably haven't always utilised it as much as we could have, but they have supported my sons. Um they do lots of events that you get invited to, like remembrance, um, and which but we do that in our own way. But they have been phenomenal, and that is very much part of my current mission. So I uh I really, really want all hospices. This is my my bigger mission is that all hospices have access to our brown bears. So I didn't really say before, but the brown bear um has a pouch in the back, so you can put a voice recording and you can put a scent inside it, any scent at all, it could be a perfume, it could be an aftershave, it could be an essential oil, anything that's meaningful or soothing for you. And it also has a heartbeat. And because you can access the pouch, you can change the batteries, you can redo the message, and you can replenish the scent so that it never, ever fades. And I want all hospices to have access to our brown bear because when you lose somebody, you know, nothing can take away that pain, nothing can replace that person.

SPEAKER_01 26:53

Yeah.

SPEAKER_02 26:53

But what you do long for, or what I longed for, was anything that could help me feel comforted or connected to Charlie in any way. Yeah. You know, whether it's jewellery, like I've got a necklace on with his fingerprint and his initial, and I have a hand cast in the house of our hands intertwined. And but I needed something physical to hold on to.

SPEAKER_01 27:17

Yeah.

SPEAKER_02 27:18

That's what I really needed. When, you know, at night time if I couldn't sleep, which I didn't sleep for I don't know, it felt like years. I think it was years that I didn't really sleep properly. You know, I held on to that teddy and I loved that teddy, and we all shared it, you know. Me and my my sons, we all shared it. We all took concerns, and if we were having a bad day, we all had the teddy. And, you know, and and that for me, I want other people who are going through the worst possible time, the most unimaginable pain. To if it just brings some comfort, then, you know, that will bring me a little bit of peace, or, you know, it it feels like part of Charlie's legacy. Yeah. You know, a way of giving back as well.

SPEAKER_01 28:12

Yeah.

SPEAKER_00 28:12

And I think we can probably talk about it right now and the fact that people can do this for other people, can't they? So you're you're at the moment you're kinda is it is it just businesses, Nikki, that you're looking at, or is it anybody can do this? Right. Tell people what you've got going on at the moment.

SPEAKER_02 28:28

So on our website on Bluebear and Co. we've got the partnership section. Um, and you can go on there, it tells you all about the mission, exactly what it is that we're trying to achieve. At the moment, we're focusing on the local hospices, uh, but this is expanding quickly. Um, and so part of that was inviting businesses to sponsor bears. So businesses often give money to charities, which is amazing, phenomenal. However, a lot of people actually love the idea of giving a physical gift, something that actually a family gets to receive. And the response has been incredible. We've got businesses, one business looking to fund 16, one business committed to five, uh, another business is committed to 10, one business is doing two a month, one business is doing one a month. Okay. So obviously, and you we can also have individual donations like yourself, Liz. And I was very, very grateful uh that you'd also donated a bear. And I know, I know firsthand, I've seen it with my own eyes, the difference that that bear will make to a family. And I think that's what's really important for me. If anybody wants to be able to give a physical gift to a family, something that they can cherish and actually physically hold on to that has real sentimental value, then please, please, please vis visit our website or reach out to me directly. Um, and we would absolutely love any support that anyone would love to offer, whether it's one bear, ten bears, a bear monthly, um, it would be so, so, you know, we we would be so grateful.

SPEAKER_00 30:19

I think it do you know what for me it was it's one of those things I think, you know, I know happens. And I think after I'd spoken to you and I'd started to learn more about your company and and what you do, the chance to be able to do something for somebody else, and you know, I don't need a big fanfare of look what I did. It was it was just I I but your heart goes out to that parents in that in that situation and it's not a not in a kind of it's really hard to put into words because I think as like we spoke about at the beginning, it's it's every parent's worst nightmare. Some of us will when even into our stratosphere of thinking you just hope it will never ever happen to your family. To be able to do something small like that and to be able to do that for somebody out there and just go, do you know what? I hope something small just helps. Meant a huge amount to me that I thought that I well, as soon as I saw it, I thought that I want to do that. I need to do that, I need to ring Nikki and say, Yep, put me down for one. Um and it made it was it's all it can be really hard to know what to do in the time in the moment when you want to support other people. And I think, like you say, just going through someone like you that I knew had been through it, and I think I even when you said, Would you like to put a message? And I said, Can you read it and check it? Because I wanted it to be right, and I think knowing that you've been there made me feel more confident than to reach out uh and know that it was going to be done in a way that felt respectful and done in the in a way that would be useful to somebody else rather than that worry that I would have had that I would upset somebody.

SPEAKER_02 31:58

Yeah. I mean, the the feedback has been phenomenal, honestly. Um Derry and House, um, they had six to begin with, and they've all gone. Um, it was actually the maternity service, a very, very special midwife that approached me initially. Um, and she wanted mothers who knew they either weren't going to carry full term or knew that their child would be born with a life-limiting condition. She wanted them to be able to create a memory, and she's used the brown bears to help them create a memory with their unborn child or their newborn, and they've she's put the heartbeat recordings inside and they make their own um scents at the hospice, so they they put their own smells inside, and that I know how much she has been so so thankful for those bears, and and this is where the mission started to grow because then I thought, well, actually, I want every child in Darien House to have access to this. I want every family in Darien House to have access to this. Um, and then East Lanx Hospice. We had a really good relationship with them. They absolutely loved the bears. And then one day I got a phone call from them to say there was um a parent who was having end-of-life care. It was quite imminent, and his biggest biggest fear was that his daughters wouldn't remember his voice. And she said, Could we have two bears? So that day I took the bears and she contacted me a little while after to say what a difference those bears had made to that family in those last stages. Um, and that for me just meant everything. I can't tell you how much it meant for me to know that actually they were really helping a family, and and I think this is where the mission's grown from, where I don't just want hospices to to struggle to buy the bears. You know, hospices have limited budgets, but to be able to gift them, how special is that? And for other businesses or individuals to be able to provide that special gift for me means more than anything.

SPEAKER_00 34:19

Yeah. And I think that's when it kind of reassures you in the hu about the human race, doesn't it? When people come forward and do things like that that you think actually there's a horrible lot of stuff happening out there at the moment, but actually

Funding Bears And Expanding The Mission

SPEAKER_00 34:30

when it comes down to it and we reach out, people respond and they do they do want to do nice things for other people and they do want to help and they do want to care. And actually, your bears are giving them the way to do that. Um, and it's just funny because you were talking then, you know, about the midwife, and I was thinking about it. You know, I had a miscarriage, and I did I didn't even put two and two together until we were just talking then. I went and had to go and find I've got it's a weird thing, it's a zebra. Well, I don't know why a zebra, but it just spoke to me at the moment. But I remember thinking I've got to find something and it had to feel right. Um and it just sits in my room and it it's there as a reminder and a whatever. And but it was some like you said, needing something physical to have there. Um, and I suppose that's when your bears really reach across all sorts of loss, grief, um but also I suppose there is a s there's a sensory element to your bears. So even just what I'm thinking like with my OT hat on, you know, the fact that there's a heartbeat, that there's a smell there, um, there can be a voice in it that actually for kids with additional needs or sensory needs or differences or parents with sensory differences or whatever it is, that actually the scope of your bears is huge.

SPEAKER_02 35:53

I think that's where perhaps my therapeutic background has been really helpful because I think having worked with children and young people for many years, it's I I've come to realise the importance of using the senses in actually grounding ourselves and being a little bit more mindful at times, and having something that that has that vibration is so soothing for the nervous system. Being able to hear that familiar voice is so comforting in a time of it could be separation anxiety, it could be a time of change, it could be anything, a parent parent separation, it can be absolutely anything, and that scent. So that scent can be something that reminds you of a happy moment in time, can be something that's just soothing and comforting. You know, teddies themselves, you know, that they're just even to look at a teddy, they're they're just comforting, aren't they? They're nostalgic, they are symbolic of comfort. And so I think what I've come to realise, I I was contacted recently by um by a mum who um has a a child who's neurodiverse. She asked if we could collaborate. Um, she um used the bear for her child, and the feedback she gave me was absolutely phenomenal. She said this has become so instrumental as part of her bedtime routine because it it doesn't solve a problem, but it what it offers is this comfort, and it's become part of their routine, and it is something that they can hold on to, something that is soothing and something that is you know just comforting um and connection and yeah, and and again, it's those moments that that give me that real drive and focus. Actually, this can help so many people on so many levels, whether it's anxiety, depression, separation, loss, you know, it it can cover so many different things.

Thumbs Up For Charlie And Respite

SPEAKER_02 38:10

Yeah.

SPEAKER_00 38:11

Mickey, can you tell us as well a little bit about thumbs up for Charlie? So, what what's that about? Because you mentioned that right at the beginning.

SPEAKER_02 38:18

What so when Charlie was receiving treatment, we had access to charities, amazing charities that offered us respite. And in that moment, honestly, I I was so grateful for that because you you kind of feel like, how could I plan a holiday? How could I plan a break? You know, I I haven't got the headspace, but also I didn't have a job at the time. My husband was self-employed at the time, you know, money was tight, we had to be really sensible, we had an amazing community around us who provided with a lot, a lot of support in more ways than one. But for someone to reach out and say, here's a break, this is just for you and your family, and this is guilt-free, meant so much to us because what it did was it removed us from what was happening, it enabled us to connect as a family, it was guilt-free, and we had time. We had precious time together to make memories and to just be together as a unit, removed from home, removed from the hospitals and everything else that was going on. And that time meant so much. It was precious. So when we lost Charlie, we decided we knew exactly what we wanted to do. We set up thumbs up for Charlie and we provide respite to families who's it can be a child um 25 and under who's been diagnosed with a brain tumour, who's receiving treatment, or families who are bereaved as a consequence. So they can either go and make special memories or they can go and reflect and remember and just have time to be. And for us, that you know there's no better gift than to give someone time, yeah.

SPEAKER_01 40:11

Absolutely.

SPEAKER_02 40:11

And it's such a big part of everything that we do, but we've also um funded three phases of a piece of research that older Hay are doing at the moment. We sorry, we've not funded the whole piece, but we've contributed significantly. Um, and that is around uh providing and helping get better outcomes and better informing families whose children have been diagnosed with a brain tumour. And we've also contributed towards a piece of equipment that the hospital needed, and we gift our brown bears to to all those families who are um whose child is receiving end-of-life care of a for a brain tumour. But sadly, our charity's constitution is specific to brain tumours, and we aren't in a position to be able to do that for everybody, hence why I've tried to think out of the box. So, how can we do this? That means we can still achieve our bigger mission, um, which is yeah, kind of where we're heading.

SPEAKER_00 41:15

And what a mission you are on.

unknown 41:18

Yeah.

SPEAKER_00 41:19

But I think the time frame that you you've had and what you've achieved in that time, that's unbelievable.

SPEAKER_02 41:27

Thank you. I think you know, sometimes when people say that, I have to have a little moment to myself because I don't actually I think I I'm on a treadmill most of the time, and I don't actually acknowledge the the things that we have achieved. And I think that's probably my biggest downfall.

SPEAKER_00 41:49

Well, amazing. When I think when you start talking about it and you realise how much you've done in that time, it's really clear to see how much you've done and achieved, and then you know, how many families you're managing to get out there and reach and get to. And I yeah, that must be your ultimate goal is to get to as many of those families as you can. Um, and I think if you know if in any what small way we can help that happen as part of the podcast, it'll make my day.

Books, Closing Advice, And Ways To Help

SPEAKER_00 42:15

So I would definitely say if you if you aren't following Nikki, definitely go and do that. I'm gonna leave all Nikki's details and uh website and all of that. I'll leave all of that in the show notes. If you want to make a donation through a bear, you can do that through Nikki's website. I will leave that. Is there anywhere else that I need to tell them about Nikki or anything else they need to know about that I've missed?

SPEAKER_02 42:37

No, I'm just going to talk about this little bear. So this is our little blue bear. We'll have to describe it as well because some people might be audio. So Nikki's holding up one of her bears. So this is our light blue bear. Okay. And this one is extra special because this one is based on Charlie's actual blue bear. And this one has our charity pin in its ear. Yeah. So a percentage of the profits of this one goes directly to our charity. So this one's extra special. And then we do have a couple of other little additions. We have our pink bear, um, and there's a story coming with that one later on this year, and it's um that story will be called Finding Me. And it's a story of kind of self-acceptance of belief, of courage and self-worth. And it's just a really gorgeous story, picture story, illustrated by a fantastic local artist who I absolutely adore. And then we have our dark blue bear, which is my favourite colour. That's a gorgeous colour. It's a really deep what colour is it? Like a deep blue or a purple? It's deep blue. Oh, it's beautiful. Love it. And then we have our book, Finding You, which I've written but illustrated by a fantastic artist. And that is a story of a bear who's lost his home and he embarks on a journey to find his forever home and has to overcome a lot of obstacles and challenges as we're doing life. So, again, it's a story of hope, courage, and resilience. Every bear has its own unique story, and it what I want to do is just create really positive messages and kind of just try and support people in as many different ways as possible. Um, and I think that's what's really important to me.

SPEAKER_00 44:32

Thank you ever so much for coming on today. I I really appreciate you coming on, and I know we spent quite a bit right at the beginning talking about your story, but I felt that was really, really important for people to hear. There'll be parents out there that may be in the same boat as you've been in, and I wanted them to hear that bit. But then also what's so amazing as well is all the bits that you now do, an author on top of it all, um, and how people can actually help. If there was one thing, Nikki, just if you were who should it be for? Maybe for a parent, maybe for a parent maybe that has lost a child and you said there was those kind of those things that people say that you just think, ooh, don't say that to me. What what would you say to them if in this moment if they were having like maybe in one of those really hard times that you were in? What would be your way to support to them at this moment apart from the bear?

SPEAKER_01 45:30

Don't be afraid to reach out. Talk to somebody.

SPEAKER_02 45:37

There is so many amazing services out there, and you know, I I think sometimes we carry so much shame and guilt, um, which is isn't justified, you know, it at the time, you know, you feel the way you feel, but we need to be kinder to ourselves. Be kind to yourself. I think that's the most important thing.

SPEAKER_00 46:03

We will end on that. I don't think I can say anything more that will mean anything more than that. So, Nikki, thank you ever so much. As I said, I will put all of Nikki's contact details in the show notes and reach out to her. And I would definitely recommend if you want to give one of those bears to a family that might need it at the moment, go do it. Don't wait, go do it.

SPEAKER_01 46:23

Thanks, Nikki. Thank you so much for having me. You're welcome.