Beatrix's Heart Journey

06/03/2026

During her berlin heart days Bea largely slept on her back, frog legged due to the ventricles.....and she has continued to do so.

Is it muscle memory?

Something in her subconscious that anticipates pipework, alarms, pain?

She will have learnt that being in that position lessened all of the above and led to better sleep.

I'd love to be able to step inside her mind and truly understand 💗

06/03/2026

Post 7 artic adventure – The Night Before & The Journey Down

The travelling.
The night before.
The wobble.

The evening before I left, I’d packed and repacked about six times. Stared at my boots like they might give me answers. I'd been wearing these boots every day for the last five weeks. They felt like slippers, they felt like mine but would they let md down with a blister when it came down to it.!

That night before I left, I wondered, quietly, if I’d completely lost my mind.

Fear and excitement feel very similar in my body. after everything we’ve lived through, my nervous system doesn’t always know the difference.

Terry checked in with me more than once that night. Not in a dramatic way. Just steady. Calm. “You feeling ok"? This is not his forte. Ha.

Sometimes you just need someone to hold the belief for you when your brain is spiralling and this is where he excels.

The next morning it all became real.
I was so kindly supported by a local taxi firm taxis who got me to the station (I’ll tag them because honestly, community support means everything ). And the train company who helped get me on my way — thank you It meant more than you probably realised.

There’s something emotional about sitting on a train alone, heading towards something big.

And within moments of sitting down… I proceeded to tip an entire bottle of water straight into my lap.

Not a trickle.
Not a splash.
The whole bottle.

So there I was. Off to the Arctic. Looking like I’d had a very unfortunate accident before we’d even left the platform.

Humbling.

But do you know what? It broke the tension. I laughed. The lovely workers on the train were so kind about it, helping me mop up and making light of it. Total strangers, just being decent humans.

And it reminded me of something.
You can be scared and excited at the same time.
You can feel anxious and still move forward.
You can soak your trousers and still stay on the train.
That journey wasn’t just about getting to gatwich
It was the first step of choosing brave over comfortable.
Even with damp trousers!

https://www.justgiving.com/page/cherylandjoanneccf?fbclid=IwdGRzaAPB_BJjbGNrA8H8DmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHlliiZ80NgOsFwL3bnRhnQdgGxKWVYv7pISL51toRVdvIS1dlAoli5Fnvcus_aem_LkFpCohHE6IUR1vGtgTSCQ

05/03/2026

Post 6 artic challenge
– What Survival Mode Does To A Mother

There’s something I don’t think we talk about enough.

What survival mode actually does to you.
When your child is ill, your body doesn’t get a break. Your nervous system stays switched on. Constantly scanning.

Constantly bracing. Constantly preparing for the worst while hoping for the best.
You become strong because you have to be.

But strength in that season doesn’t look like mountain climbing.
It looks like sitting still in plastic hospital chairs.
It looks like holding it together in front of consultants.
It looks like swallowing your fear so your child doesn’t see it.
And the thing is — even when the crisis eases, your body doesn’t always catch up.
The fight-or-flight lingers.
The exhaustion lingers.
The hypervigilance lingers.
For a long time, I thought I was just “tired.”
Or “out of shape.”
Or not coping very well.

But the truth was, my body had been carrying years of stress.

This challenge wasn’t about escaping that.
It was about proving to myself that I could move forward with it. That I could rebuild strength. That I could choose something brave after surviving something hard.
Survival changes you.
But it doesn’t have to shrink you

https://www.justgiving.com/page/cherylandjoanneccf?fbclid=IwdGRzaAPB_BJjbGNrA8H8DmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHlliiZ80NgOsFwL3bnRhnQdgGxKWVYv7pISL51toRVdvIS1dlAoli5Fnvcus_aem_LkFpCohHE6IUR1vGtgTSCQ

05/03/2026

Post 5 artic challenge – What the The The Charlie & Carter Foundation "CCF" Charlie & Carter Foundation "CCF" Means To Us

I want to explain why supporting th8s charity mattered so much to me.

When you’re living through your child being seriously ill, support doesn’t just mean medical care.

It means someone checking in when the adrenaline wears off.

It means someone understanding without you having to explain.

It means practical help at a time when your brain can barely process what day it is.

This charity like step into the gap.
They bring light into hospital corridors.
They bring community to families who feel isolated.
They remind you that there are people out there who get it.

When you’re navigating appointments, waiting lists, test results and uncertainty, the smallest gestures mean everything.

Knowing someone is raising awareness.
Knowing someone is advocating.
Knowing someone cares enough to act.
That’s why I wanted this challenge to give back.

Because this famoly know what it feels like to be in that space.

They know how heavy it can be.

And if this journey helped ease that weight for even one other family, then it mattered.

Your donations weren’t just numbers.
They were messages that said, “We see you.”

https://www.justgiving.com/page/cherylandjoanneccf?fbclid=IwdGRzaAPB_BJjbGNrA8H8DmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHlliiZ80NgOsFwL3bnRhnQdgGxKWVYv7pISL51toRVdvIS1dlAoli5Fnvcus_aem_LkFpCohHE6IUR1vGtgTSCQ

05/03/2026

Missing the snow on today's walk!

05/03/2026

Post 4 – The Real Why
I’ve spoken about the challenge.
The training.
The cold.

But I haven’t really spoken about the why.
The truth is, this was never just about me climbing into snow and pushing my limits.
I wanted to raise money for The Charlie & Carter Foundation "CCF" because families like ours don’t just need medical support, they need to know they’re not alone in the darkest days of their lives.

When your child is seriously ill, the world doesn’t just pause… it shifts entirely.
Your nervous system lives on high alert.
Your body absorbs the stress.
Your mind never fully switches off.
You become the advocate. The nurse. The researcher. The strong one.
You sit beside hospital beds. You learn medical language you never wanted to know. You make decisions no parent should have to make.

And while all of that is happening… you’re still expected to function. Theres just no way you can work. Heck you cant even really parent your other children.

The physical toll is real.
The emotional toll is real.
The exhaustion is bone deep.

For a long time, I didn’t even realise how much my own body had been carrying. The fight-or-flight mode. The adrenaline. The constant bracing for bad news.

This challenge was partly about shaking myself awake again. But it was also about shining a light on something that isn’t talked about enough — the long-term impact on parents who care for seriously ill children.

We survive it.
But it changes us.
If sharing this journey helps even one parent feel seen…

If it sparks one conversation about organ donation…

If it raises funds that support another family walking that road…

Then every frozen step was worth it.

These photos of me, they're taken about 3 weeks apart. The physical impact on parents is very real.

When we brought Beatrix home, I couldnt walk well on a gradiant (everywhere we walked in hospital was flat. If actually hurt me to walk barefoot as I was never without shoes on. I'd put on 4 stone. I couldn't sleep, still struggle now. I missed smear tests, a mri, I put off a operation I needed to improve my quality of life. All this and more in those 15 months we were in hospital. And this is just the physical affects!

https://www.justgiving.com/page/cherylandjoanneccf?utm_medium=FR&utm_source=CL&utm_campaign=020

05/03/2026

Literally can't believe my fund raising page had been busy over night!!!! I am 200 away from 3k I can't believe it!!!

I'm so so so grateful

04/03/2026

One of the most asked questions I had when I booked the trip...

04/03/2026

Post 3 artic challenge – The Weeks That Changed Everythg

So… the deposit was paid.

And then reality hit.

In a matter of weeks, I’d be doing a trek. In the Arctic. With no one else I knew.

And what better time of year to start training than dark mornings and darker nights? They definitely weren’t working in my favour.

I had a matter of weeks to get fitter than I’d been in years.

And what felt like no time at all to raise the money I’d pledged to the wonderful Charlie and Carter Foundation.

In those early days, as I processed it and started confessing to people what I’d done, I did wonder if they thought I’d finally lost the plot.

It felt like no time to prepare my body — which, at that point, felt like it was fighting me more than supporting me.

There were days my endometriosis floored me.Days I questioned what on earth I’d done. Days I thought, “This is ridiculous. Who do you think you are?”

But something had shifted.
For so long I’d been in survival mode.
Hospital mode.
Waiting mode.

This was the first time in years I was choosing something for me. Something hard. Something bold.

And I had Terry backing me all the way.

Training didn’t look glamorous. It wasn’t aesthetic gym selfies. It was walking when I didn’t feel like walking. It was building strength slowly. It was listening to my body instead of being angry at it.

And the fundraising…
That felt vulnerable.
Asking for support is uncomfortable.
Sharing your “why” publicly is uncomfortable.
Letting people see how much it means to you is uncomfortable.
But do you know what I learned?
People want to help.
People care.
People believe in you sometimes before you believe in yourself.

Those early weeks weren’t just about getting ready for the Arctic.

They were about rebuilding trust with my own body.
Rebuilding confidence.
Rebuilding momentum.
Step by step.

https://www.justgiving.com/page/cherylandjoanneccf?fbclid=IwdGRzaAPB_BJjbGNrA8H8DmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHlliiZ80NgOsFwL3bnRhnQdgGxKWVYv7pISL51toRVdvIS1dlAoli5Fnvcus_aem_LkFpCohHE6IUR1vGtgTSCQ

04/03/2026

Post 2, Cheryl l's Arctic Challenge.

You might be wondering… why the Arctic?

I mean the basic answer is I'd rather be cold than hot

The honest answer? Because life changed us. And I knew I needed to do something.

Something to shake my life up.

I was in a rut.

My health was shocking. My confidence, zero.

I’d been living in fight or flight for so long that I didn’t even know how to switch it off.

When you sit beside a hospital bed for months… when your world becomes machines and waiting and hope… something inside you shifts.

You realise how fragile life is.

But you also realise how strong you are.

This challenge wasn’t about proving anything to anyone else.

It was about reminding myself that I’m still in there. That adventure still lives in me. That I can feel fear and do it anyway.

I must’ve been randomly scrolling one day when I saw a post about a snow challenge. This was about four months before I booked. And do you know what? I couldn’t get it out of my head.

At the time my endometriosis was causing havoc. I was barely moving, never mind exercising. I knew I couldn’t do a race. I knew I didn’t want somewhere hot. But I couldn’t shake the thought of this trip.

The first mistake was voicing it. Letting the thought out of my head.

The second mistake was who I voiced it to.

Terry.

The one who gets stuff done.
My biggest cheerleader.
The one who pushes me to do better. Be better. Live better.

I started backtracking almost immediately.
It could be something for 2027.
It was only 12 weeks away.
I’d never afford it.
I’d never be fit enough.
I’d never be prepared.
I’d never fund raise enough money in time.

But I should’ve saved my breath.
Because once I said it out loud to Terry, it was basically a done deal.

“Stop putting life off.”

That was the instruction.
And before I’d even properly processed it… the deposit was paid.

I can remember my first walk once I booked it. It was just around the woods where I live. 15 minutes in was crying and fighting a panic attack as I didn't think I'd be able to to it. I stopped walking. I looked at yje lovely autumn colours and it just really calmed me. And I kept going.

https://www.justgiving.com/page/cherylandjoanneccf?fbclid=IwdGRzaAPB_BJjbGNrA8H8DmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHlliiZ80NgOsFwL3bnRhnQdgGxKWVYv7pISL51toRVdvIS1dlAoli5Fnvcus_aem_LkFpCohHE6IUR1vGtgTSCQ

Help Joanne Nicholson raise money to support The Charlie & Carter Foundation

03/03/2026

Hey, it’s Cheryl. I’m home.

Home! My life experiences make me appreciate home so much more than before.

I’m absolutely loving being back with my little family. I feel like I've been gone for a month!

I’m still processing the last few days — what an experience it’s been. I’ve had so many lovely questions about the trip (thank you!), and I’ve completely lost track of who I’ve replied to, so if there’s anything you’d like to know, please pop it in the comments 😊

As you all know, we set this page up to navigate our own feelings and share our experiences — as parents, as a couple, as a family — but also our individual thoughts around family life and organ donation.

So I hope it’s okay that over the next few days, when I can, I’m going to share some of my Arctic journey with you. Not just the adventure side… but what it meant, what it stirred up, and what I’ve brought home with me.

There are so many of you I owe such huge thanks to. I am genuinely full to the brim with gratitude 🤍