Grief is a profoundly complex and messy journey, as Louise Long shares in this heartfelt conversation with host Sara.

Louise, who founded the Dylan Strong Foundation after losing her six-year-old son to a brain tumor, opens up about the struggles of navigating grief

She emphasises how grief is so personal, can hit unexpectedly and manifests in various ways. Throughout their discussion, Louise highlights the need for support and understanding, both for those grieving and for the families affected by childhood cancer.

This episode not only sheds light on Louise's personal journey but also serves to raise awareness about her charity, which offers practical help and empowerment to families dealing with similar challenges.

Takeaways:

• Grief is a complex journey that can be both beautiful and painful at the same time.
• Honesty is crucial when discussing illness with children, using age-appropriate language.
• Finding ways to include a lost loved one in family traditions can be healing.
• It’s important to acknowledge grief openly rather than avoid difficult conversations.
• Nutrition plays a vital role in the health of children undergoing cancer treatment.
• Supporting families in grief requires compassion and understanding rather than trying to fix their pain.

Links referenced in this episode:

• dylanstrongfoundation.co.uk (website - including events)
• https://www.facebook.com/dylanstrongfoundation (Facebook)
• https://www.instagram.com/dylanstrongfoundation/ (Instagram)

Companies mentioned in this episode:

• Dylan Strong Foundation
• Wildly Tasty
• 
  

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Website: https://www.saraburton.co.uk/  

I've learned that grief is hugely messy.

It doesn't also always have to be bad.

You can be grieving, but actually it can be a really beautiful process.

And grief hits you from nowhere.

So one moment you can be doing really well, and the next minute you can be triggered by a smell or a sound or a bit of music or something.

And it just takes, you know, takes your feet from underneath you.

It's just a process.

And it's a process that you have to learn to accept.

And, you know, everyone talks about the five stages of grief, and I will never, ever accept that Dylan has been taken from us and never be able to accept why.

I'll also never be able to answer why.

Welcome to Start over and Rise.

I'm Sarah Burton, your host, and this is the podcast for you if you are ready for fresh starts to reclaim your power and create the life that you truly desire.

Whether you're navigating a major life change, recovering from a setback, or simply just feeling a bit stuck or that something is missing, this.

This is your space for inspiration, practical tools and empowering conversations.

Each week, we'll dive into topics that help you step into the person you're meant to be so that you can rise to your new desired heights.

Because here's the truth.

It's never too late to make a change and it's never too early to start over with your thinking, with your approach, with your attitude so that you can be, do and have all you want in your life.

So let's get started.

Hey, gorgeous.

How are you doing?

I hope you've had a fabulous week.

My guest today, who you heard at the start, is the lovely Louise Long.

She is the founder of the Dylan Strong foundation, which is a charity for children diagnosed with cancer and their families.

And they provide support, advice, and also advice on nutrition and how to access healthy food in order to boost the child's strength during treatment.

There's a whole bunch of other work that they do as well.

So she's here in that capacity, but she's also here as a mother who lost her six year old boy, now as a mother myself.

And I'm sure many of you are, you know, have families.

This is one of those things that you just can't imagine what it's like to go through something like this.

And so Louise has come on today to also talk about grief and it really is quite remarkable what they've been through as a family.

And for her to share her thoughts and experiences with it, just to help other people who may find themselves in exactly the same position.

So the charity we want to promote, not only in a way that you can support it and understand what it is that they do, and clearly donations, also very, very valuable, but also to help raise awareness that this charity is out there and that if there are any families who are going through this, then obviously Louise wants them to know about the charity so that they can go in and help them.

So she's here in two different capacities.

So this is one of those episodes that when it comes to the whole start over and rise.

How.

How do you start over and rise after something like this, a loss like this?

And Louise very eloquently answers that particular question.

Here she is.

So my name is Louise Long.

I am a personal trainer, functional nutritionist, and I also have a charity called the Dylan Strong Foundation.

So I run in my spare time the Dylan Strong foundation, which is a children's charity set up in honour of my son Dylan, after we lost him to a brain tumour.

And the charity supports children and their families that have been diagnosed with cancer.

And we give nutritional support and advice to those children just to really help support them along their journey with treatment and afterwards as well.

Tell us about Dylan.

So before Dylan was diagnosed, he was.

So he's one of three.

I've got my oldest, Harrison is 12, then Dylan should be 10, and then Emily, my little girl, is 9, going on 19.

She terrifies me.

And Dylan, up until his sixth birthday, was healthy, happy, full of cheek.

If, you know, if you go on our website or on our.

Any of our socials, you see, he just had the most amazing smile and he was able to get himself out of lots of sticky situations with that smile.

And he was just full of character.

Absolutely adored football.

He was a massive, massive football fan.

So luckily I was there and he.

He was playing a game and tripped over one of my daughter's friends, actually, and fell to the ground and hit his head.

And as I went over to see if he was okay and bring him back over to me, he had this, like, what we now know as a seizure, but at the time we just thought it was a bit of a funny turn, maybe he bumped his head.

So he.

I took him home just because I was a bit concerned.

And then he was absolutely fine till the.

Till the end of the week and then on the Saturday he went to football and he had another few of these kind of funny turns.

And I took him to the hospital because obviously I was like, he must have hit his head.

And maybe he's got a bit of, you know, concussion to come.

Doctors, they, or the hospital, sorry to a, they did lots of neurological tests, made sure his heart was okay, and then sent us on his way.

They said, I think he's fine, there's nothing to worry about.

Following Sunday, it was his party, he had a football party.

And he must have had in between 8 to 10 of these little seizures and they were getting more and more kind of severe.

And we noticed that he was turning his head to the left and he was going very stiff.

And again, he'd never presented in any way like this before.

So we were obviously really concerned.

But Dylan being Dylan, he didn't want to give up and he certainly didn't want to miss out on his birthday party.

So he was like, just leave me, mummy, I'll be fine.

So continued with all his friends.

And then that afternoon I took him straight to AE and he was admitted into Epsom Hospital and we spent.

Spent the night there so they could monitor him and see what was going on.

And again, they just said, you know, we don't think there's anything he's not, you know, neurologically, he seems fine with the tests that they were doing.

So they said, it sounds like he's having panic attacks.

And I was like, if you'd have said that about Harrison, I would have agreed.

But I said, he's just not that type of child.

He's not, you know, he's not someone who has panic attacks.

He's not anxious.

Asked for a second opinion and they kind of said the same.

Sent us on our way again, we got him home, he had another few seizures and then eventually they sent us for a CT scan where the consultant at the time said, there's nothing showing on the CT scan.

No tumors, no nothing.

He's fine, but we'll refer you to the anti seizure team and the seizure team, sorry, and they will get in touch.

We didn't hear anything for eight weeks because of COVID and we just assumed he had epilepsy.

And we were just waiting for the call.

We tried to call a few people at the hospital, but we didn't hear anything.

And because we'd had a scan, we just assumed, you know, it must just be that.

Eventually the consultant from the epilepsy team called and I explained what had been happening and she was surprised to hear that he was still having kind of three to five seizures a day.

And then she sent us for an emergency eeg and then after that they found that there was a lot of activity on his right side.

He was then sent for an mri, an emergency mri.

And we were told that his type of tuna was tumor was the worst type of tumour that child could have.

There was zero chance of survival.

There was nothing basically they could do.

They would try and keep it as stable as they could for as long as they could, but they knew that treatment wouldn't work.

And we were told that.

And then you kind of sent on your way and off you, you know, and, and that was it.

So our life obviously got absolutely turned upside down.

And as well as dealing with the diagnosis and coping with COVID we were trying to deal with the seizures, which were awful.

And because I had a background in nutrition and as a personal trainer, I was really kind of, I was really surprised that they didn't take time to kind of say, look, he's going to be on chemotherapy and radiotherapy.

We know that they affect the immune system, so here's some things that you can do.

They just didn't take that time at all.

Which is why after we lost Dylan, we started the Dylan Strong Foundation.

I mean, gosh, there's, there's so much in, so much in there to be, to be taking on board.

So how long was that, that period from, from when he first started having seizures to, to when he passed away.

So.

He was given roughly three to six months to live because of the type of tumour he had.

It was so aggressive.

But obviously he lasted just over a year, which was incredible.

And we do put that down to the fact that we massively changed his diet.

I mean, my kids have always eaten well, they're not, you know, but we massively changed his diet.

We removed all sugar, we cooked everything from scratch.

We really focused on, you know, anti inflammatory foods and just filling his body with such goodness.

And I just remember just feeling so alone in that journey.

That was something that we could do, that was positive.

It gave us some control back.

But even.

And I literally spent every waking hour that I wasn't with him once he was asleep or anything like that.

And the other two, I would then research for hours and try and find you know the best, the best kind of holistic treatments for him.

And I was just amazed that there was.

There was just no support in terms of.

From the NHS or even outside the nhs.

There weren't many charities doing what.

What we felt was actually something really important.

And the difference it made.

It didn't save his life, but absolutely gave him his life.

He was able to live the best that he could whilst going through just the most horrendous treatment that children should.

He was able to go back to school, he was able to go back to football.

And up until the last six weeks of his life, he just had a normal, you know, a normal, A normal life as much as any child in covert.

And he was on no.

No steroids at any point in his, in any point in his journey and no other kind of medications.

He was never in any pain.

And we, we genuinely do put that down to the fact that his diet was, Was so good.

Yeah.

That's amazing.

I mean, with your knowledge as well.

It was, it was certainly something you were, you were going to dive.

Dive into that.

Yeah, absolutely.

How do you tell a child the gravity of a condition like this that Dylan had?

It's a really tricky one and I think every child's different.

So, you know, as a parent, carer, whoever is looking after that child, you know, the child so you know how much they can absorb and how much is the right information to give.

So, so we were always very honest and we said, you know, you've got this tumor which is what's causing the seizures.

It's horrendous.

We called him Trevor and we said, you know, we're doing everything we can to get rid of Trevor, which.

And we use that as, you know, let's, let's, let's see what we can do with your diet.

Let's make you as strong as possible.

So we used it in a really positive way and the language that we used around it was, you know, and because he was obsessed with football, we were like, if you look at what a footballer eats, it's so he can recover if he injures himself during, know, a football match or so.

Everything that we did was really age appropriate for him at the time.

And again, we did a lot of research to make sure that we were honest with all of them, but in a way that they can understand.

We didn't want any of them to be worried, but we wanted to be honest because children pick up so much on what you don't realize.

So we never wanted Harrison and Emily to say, well, you lied.

You never told us this.

And we also didn't want them to feel like we weren't telling them something.

So we were always honest.

If they answered questions, we said, look, you know, this is.

This is what's happening.

But we also never told any of them that Dylan was going to die.

And this is what we've been told because we.

We didn't want to believe it ourselves.

And, you know, I think there would have been no benefit us telling them that.

I didn't want Dylan to feel scared.

I didn't want the others to feel scared.

It would have changed their.

The memories that they made, and I didn't want that to be part of him.

I think it's very different when you've got an older child.

And again, everyone chooses what they do, and that's right for them.

But we knew that for our family, that was.

That was right.

How do you pick yourself up, Louise, from a loss like this?

Oh, I think it's a.

A huge, huge kind of not a learning curve, because that's not the right thing.

But it's.

It's never as easy.

You know, I talk about it with my clients.

It's never that straight line.

We always think our journeys of whatever they are, this straight line.

But I've learned that grief is hugely messy.

It doesn't also always have to be bad.

You can be grieving, but actually it can be a really beautiful process.

And grief hits you from nowhere.

So one moment you can be doing really well, and the next minute you can be triggered by a smell or a sound or a bit of music or something, and it just takes, you know, takes your feet from underneath you.

It's just a process.

And it's a process that you have to learn to accept.

And, you know, everyone talks about the five stages of grief, and I will never, ever accept that Dylan has been taken from us and never be able to accept why.

I'll also never be able to answer why.

But I have to accept that it's happened.

And that's something I've learned this year.

You know, three years on.

That's one of the things I've had a lot of.

I've had a lot of counselling, so I had a lot of counselling at the beginning.

Me and my husband both wanted to make sure we were dealing with it in the best way that we could so that we could then support the other two.

But this year, at the beginning of this year, I was diagnosed with post traumatic stress.

A lot to do with the fact that Dylan had Seizures, and they were just so horrendous.

And also the fact that because of COVID I had to do a lot of the hospital trips.

And I mean, I was told that Dylan had a tumor on my own.

So a lot of that, I didn't have the support of my family or even my husband.

So that was quite, quite tough.

And I think one of the things that having treatment for my post traumatic stress, it's just opened up my eyes as to how I've been dealing with it and how to now deal with it moving forward.

And I think having the right support around you is so important.

But for someone who kind of like, I've always put a brave face on them going, oh, I'm fine, like, that's my go to answer.

So if someone says to me, you know, how are you feeling?

How are you?

I would be like, yeah, I'm fine.

Whereas now, like, you know, we spoke about this before we came on.

It's a really difficult answer to give.

And I'm trying to lean into the fact that it's okay one minute to be okay and to smile and to laugh and to make new memories even though Dylan's not here.

And then other times to just feel really sad or to feel like I'm massively overwhelmed because I've taken on too much work because I'm trying to, you know, be busy.

And I see that now so much, you know, especially across social media, when people are having tough times, you see them say, I'm just keeping myself busy because it's easier.

And actually, it's one of the worst things you can do because you don't process what you're going through.

And this is like, I've learned this this year is being busy isn't always best.

You actually sometimes need to slow down, take note of how you're feeling, sit with those feelings, and then accept and think, how can I now move on so that I can honor however I am feeling?

But no, this is not where I want to stay.

And I think that's been the biggest thing that I've learned is my night.

My life is never going to be the same ever without Dylan, and I don't want it to be.

I've also learned that grief, as I said, doesn't have to be bad.

It can be a really beautiful.

Because my grief is Dylan.

That's my connection to him.

So I don't want to get rid of that.

So I think it really is about accepting it.

But accepting it doesn't mean you're accepting what's happened.

But definitely accepting that this is just how you move on with your life.

I mean, there's so many changes in such a short amount of time.

You know, day wear as a family with three gorgeous kids, in a busy life, in a business.

And then this happens and then there's.

There's your life dealing with, coping.

I don't know what the right word is.

I can't, as a parent myself, I can't imagine what it must have been like to be there for all of them, you know, And I imagine you are very much the center point.

Yeah, absolutely.

And I think, you know, as a mum, we get very good at shutting off, not our feelings, but just.

I can't deal with this right now because I've got to, you know, I've got to deal with life.

I've got to have the kids.

And one of my friends posted something the other day and I thought it was so true and it was, you know, from the film Love, actually, when she finds out that he's bought the necklace for someone else and it's not her and it's, you know, and she.

She's so upset and then the kids run in and she kind of wipes her eyes, isn't she?

As if.

So I'm absolutely fine.

And that's when I.

When I read that and what my friend had written as well, I just thought, that's so true.

That's what we do.

So I remember sitting outside when Dylan was having radiotherapy, just feeling absolutely heartbroken that he was having to go through this awful treatment and terrified that he was going to have a seizure, because if he had a seizure, it would have been really dangerous, all these mixed emotions.

And then as soon as it would finish, because I couldn't be in there with him, because you can't when you're having radiotherapy treatment.

I would hear him go, mommy, I'm finished.

And, you know, I'd go in and just.

You just have to get rid of all those emotions.

So it's very.

It can be so difficult because a coping mechanism to some of these things, you have to bury it deep because it's the only way to get through.

But equally, it does all then catch up with you at some point.

So I think, yeah, that you've got to find that.

Right now I can't deal with it, so I'm just going to pop it to the side.

But then equally, just spend some time going right now I can revisit that trauma or whatever it was and sit with those feelings.

And again, just make sure you're kind of processing them.

Yeah.

You're amazing.

Lou, I have to say.

Where did you find the inspiration to start up the charity?

I mean, Dylan, first of all, he was my absolute inspiration.

I knew that as soon as we lost him, I needed to put my energy into something positive.

And I also wanted to continue his.

His character.

Our charity is very much about a bit cheeky, a bit, like, massively positive.

And I also wanted somewhere for people to go that was positive, which sounds quite.

Not wrong, but I remember when I did any research and I went on to charities, I won't name any, because I think every charity is just amazing at what they do.

But when I would go onto a website and I'd see almost a negative image of whether it was a child going through cancer or it was the statistics of brain tumors or anything that I saw just sent chills through my spine.

And I was like, I can't even look at this.

I couldn't find the information that potentially I needed because it terrified me when I went on these websites.

So I wanted the first page of our website to be Dylan's beautiful smile.

And everything is very red in our charity because his favorite color was red, because he was a Man United fan.

And I wanted somewhere for people to come that gave them hope, because I think hope is something we had every day.

We had hope every day that what we were doing was different and that he would be, you know, that different case.

They could tell me all the stats that they wanted, but we were doing something that was really going to support him.

And as I said, I know it didn't save his life, but it absolutely.

The quality of his life was amazing.

So that was something that was a massive inspiration for mine, for me.

And I think if we could be that.

That support to other people that has just, you know, continued to kind of snowball, really, with what we do now with the foundation.

What was the information that you were.

You were searching for that just wasn't.

There at the time so much, really.

Just I remember getting frustrated at the dietitians when we did see them, because they were constantly trying to give us these, like, milk drinks to boost calories.

Because after radiotherapy, he did really struggle with his.

With wanting to eat.

And this is something we hear all the time.

I can't get my child to eat.

It's really difficult.

You know, some kids are bad enough when they're not going through treatment.

You know, kids are difficult.

So I wanted someone just to help me, and I found that very difficult trying to get in touch with anyone within the nhs.

As amazing as the NHS is, we all know it's absolutely pushed the limit.

So nutrition is just not something that people really talk about.

So I wanted to talk to someone about, you know, I know calories are really important, but if I can't get him to eat anything, should it be rubbish calories or should I, you know, just be like, no, come on, Dylan, you can do this?

And also, are there better foods for him?

Are there some things that we should be reducing?

And again, even in terms of when we went into hospital, I wanted to be there to be better choices.

So I remember him because his taste buds changed so much and we did remove sugar.

He then ended up not liking chocolate.

And I remember he was given a Advent calendar at Christmas and he said to the consultant, oh, well, I don't like chocolate.

And the consultant turned around and said, I don't think I've ever met a child that hasn't liked chocolate.

And I was like, but come on, we should be, you know, really encouraging these children.

I know that they're going through tough time.

If actually we can educate them into some things that make their body feel good, that's going to empower them to help themselves feel better.

And again, it gives them something to focus on, something positive.

And Dylan loved that part of it, and he was 6.

You know, I'm not saying it's easy and I know with older kids it's difficult, but if we can make it fun and engaging for children and it puts them again in a little bit of control, I think that can be so powerful.

Yeah, definitely.

It's an area, isn't it, that sort of begs the question, why.

Why was this?

I think there are so many different reasons.

One, I think the nhs, as we've said, is massively pushed the limits and we absolutely want to work with the NHS and with consultants in hospitals and we've got some amazing connections.

There's a lot of red tape.

There's a lot of reasons as well.

You know, I'm very appreciative that there is a massive food poverty.

So how can you say to a family, you know, this is the best food for your child?

Every child's very different.

There's lots of different factors to it, which does make it very confusing.

But we just.

We don't.

We don't want to say, you know, you've got to eat this, but let's just simplify it.

You know, when we go into schools and we do workshops to.

To children to educate them we talk about green food.

So green foods are amazing at boosting your good anti, getting the antioxidants into your body.

Red foods are amazing to keep your heart strong.

Orange foods can help you see in the dark.

There's ways in which you can just give subtle messages for people to go, oh, okay.

And by children understanding that going when they have their bowl of cocoa pops in the morning, I'm not saying take them out, but why not have a bowl of fruit by side of it?

You're helping that diversity.

You're getting more goodness into that child and again, you're giving them that control.

But we kind of, I think have grown up as well in that it's either all or nothing.

So you either eat really well and you're a whole food type of person that eats fresh organic stuff all the time, or you're someone who eats ultra processed food all the time.

Where's the middle ground?

There is no middle ground now.

And that's all we're saying.

We're not saying don't have McDonald's if it's your favorite food, but why not have some goodness as well?

And I think that message somewhere has got lost and we just kind of carried on rather than questioned it.

What were the key things that you really wanted to offer?

Because I'm sure you could think of a million things to help.

But what are the key things that you've focused on with the foundation to help other families?

So there's three main things really.

One is that education, really simple education and empowerment to give people information.

But for them to go, I didn't realize that.

But of course, you know, so many people we talk to go, I just, especially when you're so overwhelmed with information.

We want to give simple information.

We also then didn't want to just give the information, then go, right, we'll see you later.

We wanted them to be able to support them.

So we then send food packages.

So we've got in touch with lots of companies and one of them that we work with is called Wildly Tasty.

And Louisa, the founder of Wildly Tasty Designs, children and family meals that are all plant based, full of goodness and that they then go in the freezer.

So as and when you need that meal, take it out the freezer, pop it in the oven and it's easy.

So whether you can't be bothered to cook, you're too exhausted, you haven't been shopping because you've been at hospital appointments, we then can stock your freezer with a load of goodness.

So that's One of the things that we really wanted to be able to do was to support there.

But also in hospital, as I said, there's very little choice.

I wanted there to be more choice.

So we take in foods, we stock parents rooms in hospitals and we're also just about fingers crossed it's coming soon to put in healthy vending machines.

So vending machines in children's hospitals with healthier options and things like gluten free choices, dairy free choices, you know, you don't tend to take nuts in any way, but some of these things that a lot of children, they don't want or they can't have.

So we're there again for children and parents to be able to have healthier food 247 when they're in hospital.

When it's coming up to Christmas and it's, it's a time for many people when you're, when you're in your grieving, how do you.

I'm just, just reflecting here myself.

This is my second Christmas that I don't have.

My mum, she had a rare cancer and I don't know, it's obviously it's a very different thing to losing a child and sometimes people like, don't speak about her or you know, because they don't want to upset you.

What would for someone who's lost a child, what can people, how do they deal with it?

How do they say to you, you know something when Christmas is, is coming up without it being the wrong thing to say?

It's really, really interesting actually, because I think so many people don't know.

And again, before I lost Dylan, I wouldn't have known what to do.

Whereas now I think I, I just want people to acknowledge him.

And I think people are so worried of exactly like you said, upsetting you.

But what you have to remember is like I lose Dylan almost every day.

It's, you know, that moment you wake up and you think, oh, it's not a dream.

This is my reality.

And part of, part of that is learning to carry on every day.

So it's not like I've forgotten him.

He's.

That he's.

The loss is there.

He's still absolutely part of our life though, so we still include him in everything.

So one of the things that I've spoken to a few of my friends or family about is still write his name in a card, still write it down because he is absolutely still part of our family and always will be.

And again, I think that is different when you've lost a parent because you don't do you.

That, you know, that almost doesn't seem right to do that, but with a child, still acknowledge that, that child.

Because they should still be here.

And again, I'm not saying that a parent shouldn't or anything like that, but I think one of the things that I get quite a lot is someone will say, I've lost my mum or I've lost my granddad or, you know, someone, and they try and compare.

And I actually don't think you can compare to anything because, you know, I can't imagine losing my mum because my mum is still here and I have the most amazing relationship with my mum and my dad.

So I don't think we should be trying to compare because, again, everyone's grief journey is very different, but when you lose someone, it's very different.

So, you know, I think we've almost got to get out of that.

Exactly, like I said, that comparison, because it just isn't the same.

Grief is tough at any point in time.

And I think when you lose a parent at almost the right stage of their life, I think you can accept it easier than if you lost a child.

But equally, I can then say, I had seven incredible years with Dylan, you know, rather than someone who's lost a baby and didn't get the chance to know what that child was like, there's always someone out there who's had it worse or there's always someone you can compare.

But actually, I don't think we should be.

Because actually, you losing your mum is just as tough at certain times as me losing, you know, losing Dylan.

And I think we just need to not try and compare and just, again, sit with those feelings and be.

Be present with those feelings and how we are.

Yeah.

I think one of the things it's taught me is there were friends that reached out to me at the time who had lost their mums, who did know what to say, you know, it's, Isn't it?

And I think that's what's so wonderful about your charity, is that there won't be anything that you just mean that connection that they'll be able to have with you, because you have gone through that.

Yeah.

And I think, yeah, we do.

Grief hits us all in very different ways.

It's it with a child.

It is.

It is different, as you say.

And I think, you know, again, just.

Just sending a message or don't not get in touch with that person, just send a message and say, just thinking about you.

I don't need someone to try and fix it for me, because you can't fix it.

Anything to do with grief, you know, no one can unfortunately, fix you losing your mum.

It's just something again, we have to learn to accept.

So I'm not expecting anyone to say something to me that's going to make it better, but just acknowledge it and say, I know this is a really tough time.

I'm thinking of you.

That's.

That's it.

Don't try and say something like, it will get better next year, or once you've gone through it the first year, it will get easier.

That doesn't help, because actually it doesn't.

And everyone grieves very differently.

So hearing those things, you just think, oh, you don't understand.

And then you feel lonely because you think, you know, then you.

You get the other emotions because you just want people to just give you a, you know, a hug and not say anything.

And I think that can actually be really powerful.

I think we all want to help and want to fix it.

So we say things, but actually sometimes it isn't the right thing to say.

And actually just, you know, just some of my friends just send me a little red heart and that's.

That's all they need to say.

Yeah.

And, you know, your family is growing, and Dylan would have been, well and.

Is growing with that family, and my brother is.

Since Dylan's past has had his two boys and my best friend has had a little girl.

So exactly like you say, my family is really changing.

And that, again, is one of the difficult things to accept, because I want Dylan to be here and I want for them to.

To know him.

But.

And they will, but it will just be in a different way.

So again, it's.

It's really accepting that and then being okay with that.

And.

And that takes time.

It doesn't just happen overnight either.

Yeah.

And nor should it.

Right?

No, absolutely.

When you help other families through the foundation, how does that feel?

Oh, just amazing.

I love it.

I do.

It's why I do what we do.

I know the difference it made to us when someone reached out or, you know, a charity.

We were very fortunate that we were supported by an incredible charity called Momentum.

And I remember at the beginning, you're kind of bombarded with information and some charities getting in touch saying, we can do this for you, we can do this for you.

And that, for me, was too much.

What I loved about Momentum was that they were in the background.

So they sent us a few things every now and then, and we're just like, we are here when you need us.

So we really try and do that in a different way because we don't offer the same things that momentum do.

But we're just, you know, every now and then, we'll send, like, a little bakery kit to the children so they can all bake together, regardless if that child then decides to eat it, because they might not feel like it.

Giving a family time and memories is just something, you know, amazing to be able to do.

So I love the fact that we can do that.

And we just.

We've got a big wrapping day tomorrow where we've got all of the presents that we've ordered for the oncology children that we look after.

So we're going to wrap them all up and then send them.

And again, I think it's amazing for the children we do siblings as well, but also for the parent just to go, they get it.

They know what we're going through.

And the fact that we have gone through it, I think, again, gives parents a lot of comfort because we know what they're feeling.

So, again, at certain times, like Mother's Day and summer holidays and back to school in September, we always send something just to say, we're here, we get it, and we're here for you.

Yeah.

And you know what to say because you're.

You're.

You're living it.

Yeah.

How is this changed you?

I mean, like, I can't even put that into words, really, because I think it's changed my life.

Like, it's literally flipped it upside down.

And some things I think for the better, which doesn't seem right to say because, you know, it's not better because I've lost Dylan, and I would swap any of that in a heartbeat.

But certain things I've learned about myself that I never would.

The relationship I had with Dylan in the year that he was diagnosed and then we lost him, I had a completely different relationship with him had he never been diagnosed.

So hold on to that, because that relationship was so special, which obviously then made it not even harder, but because we were so bonded in a way that I never.

I never had before with him.

And that was.

That was amazing.

And something, like I said, I just wouldn't have had that.

So you become very grateful for things that you just don't think you would.

Also, I've met some of the most incredible people.

Either they've lost children or I've just met them through the work that we do.

I never would have met them had I not lost Dylan.

And some of them have gone on and just shown me amazing strength.

And because of what they've shared or because of what I've learned from them, it's helped me along my journey and then it's also showed me, I suppose, just another side of me that I never.

I never knew kind of existed.

It was always probably there.

But I've had to really work on some of my demons because it's really brought them to the forefront, I suppose.

And I, again, I know I have to work on them.

I can't busy myself any longer.

I've got to work on them and do the work for me.

So I think, yeah, it's changed, changed me now I can see.

And moving forward, not for the better, but, you know, going in that way.

You really touched me then when you said that.

It feels wrong to say there's some good things that have come as a result, because obviously you would exchange that.

Of course, course you would.

But obviously one of those things is, is the foundation and being able to more people, you know, understand who Dylan, who Dylan was and his legacy, which is just amazing.

So how can people support the foundation?

So we obviously head to our website.

We've got different events that we do through the year.

We haven't actually put our events next year up, but we've always got things going on, whether it's fundraisers.

Yeah, just lots of different things.

So our website is just.

Dylanstrongfoundation.co.uk Again, you can follow us on socials, which again is just Dylan Strong foundations, all very easy.

And keep up whether you'd like to do a fundraiser for us, that's always amazing.

We currently get no other funding, so we do everything ourselves.

We've just.

We're nearly at the 200,000 pound marker that we've raised since we started, which, again is incredible.

And just share, just sharing who we are and, you know, letting other families.

If you know someone who could really do with our support, then just share that so that we can help people.

It's not always about, you know, I always say to people, actually isn't always about giving us some money.

Sometimes it's just putting us in contact with someone or just talking about us and saying, oh, I heard about this amazing charity, just talking about us and raising that awareness.

Because small charities get very little support, whether it's funding again or just getting out there and, you know, so if you can support any small charities, then please do, because the big ones are amazing and do absolute phenomenal.

And obviously they started small too, but it's the small ones that really can make that much more personal difference that just need a little bit of extra support as well.

So, yeah, anything like that.

Sure that all the links are in.

Are in the show notes as well.

And a final question is, what have I missed?

What question would you have liked me to.

To ask you that I haven't touched.

Upon, to be honest.

I think actually you've kept some.

Yeah, you've asked me some great questions.

There's nothing that I feel like we haven't been able to talk about.

You've spoken about, you know, asked me about Dylan, which has been amazing.

So I've given him.

And again, hopefully people can get the idea of him spoken about the charity and what we do.

And again, I think it's super important to speak about grief and how to approach grief and bereavement and for anyone who is going through it or who.

Anyone who's trying to support a friend going through it, you know, we've been able to speak about how best to support that.

So, yeah, all's good.

Brilliant.

That's wonderful.

Thank you so much, Louise, for coming on.

It's an absolute pleasure to see you.

You're looking amazing.

So thank you so much for your time.

Thank you very much.

So goodness, a lot to unpack.

My thanks again to Louise for coming on.

I'm so grateful that she.

That she did and she spoke so freely, which is just wonderful.

If you want to find out more about the charity, see the gorgeous pictures of Dylan and really get a flavour of his character and what the charity is all about, then do go and check out the show notes so that you can go over there and show your support.

If you would like to give me some feedback on this particular episode as well, then please feel free to contact me on social media.

My links are also in there and should you be in a place where you need that support, then do, please contact Louise through the charity.

So all that leaves me to say today is no matter what you're going through, there's always someone out there ready, waiting to help and support you.

You've just got to reach out for the help.

So I'm going to leave you on that note and I wish you a very happy week.

There is going to be an extra episode on Thursday that's coming out in preparation for the episode that is coming on the following Monday.

I'll see you soon.

You take care thanks again for listening.