Freddie’s Journey

02/02/2026

When you receive this from the care agency to say thank you for being so understanding.

I’ve had a really emotionally draining weekend where I doubted everything about my ability to be Fred’s mum. I’ve felt let down and betrayed as well as other stuff going on plus today being quite heart wrenching anniversary. This has come at a time I really needed it. I love nothing more than fresh flowers in my home, so thank you!

19/01/2026

Is there anyone local to us who’d like to take on a new challenge? Freddie’s care agency are looking to find someone to come and support Freddie at home. All training will be given by the company and you will never feel unsupported. The company have nurses and senior staff on call 24/7 & we will never leave you alone with him until you’re 100% comfortable. It would include every other weekend and some nights so flexibility is important. It’s a great opportunity for anyone looking to try something new or existing carers looking to change companies. I’ve linked the ad below.

G&P Healthcare Ltd

18/01/2026

Just taking a moment to appreciate my eldest baby! I don’t she’s aware of just how incredible she is. Unfortunately due to our circumstances she often has to entertain herself. But she never complains or resents. She may not be aware, but she is a young carer. Siblings of complex children often get overlooked, but I’m not overlooking her. I never miss just how amazing she is. I’m so proud of her! ###

16/01/2026

So after nearly three weeks of Groundhog Day, Freddie went back to school today. My clever little man managed a whole day with no drama!!! ✊🏻✊🏻✊🏻 It’s been a horrendous start to the year, but after a day of normality, it feels like we’re finally getting our s**t together. So after a successful day of school, we’re gonna have a quiet weekend, (let’s not run before we can walk) and rest him up before attempting a ‘normal’ week. 🤞🏻🤞🏻🤞🏻

13/01/2026

Look who made it home last night!! We got the band back together!!!

06/01/2026

Having a mentally drained day today. I was hoping that Freddie would be discharged today but it feels like he’s taken two steps backwards. I’ve come home feeling pretty sorry for myself and aching everywhere from a week of hospital chairs. Just want him home now.

Unfortunately this feeling is part of parenting a medically complex child. I’m sure after a good nights sleep I’ll be feeling more positive. 🤞🏻🤞🏻🤞🏻

03/01/2026

So I came off social media earlier this week as I needed some time to give my head a wobble. I always struggle over the Christmas/New Year period as the whole season looks and feels different for us. We can’t make plans like other families as Fred gets so overwhelmed and it’s also likely that this will happen. Yep! He’s back on the ward!!

If you had asked me Tuesday, I’d have said that he’s as healthy as an ox and we’d managed our first Christmas and New Year without a hospital admission. Then the early hours of Wednesday (New Year’s Eve), he suddenly went downhill and by lunchtime he was in A&E with a chest infection.

Gutted!

Not just gutted! I’m angry! I’m angry that we’re here again! I’m angry that there’s nobody to direct my anger at! I’m angry that my boy goes through so much and it’s just not fair!

Needless to say that I’ve now given my head a wobble and I’m feeling much stronger.

Andrew posted a few days ago that one of his New Year’s resolutions is to tell people to f**k off more. Sounds like he’s trying to be funny doesn’t it?! He was being deadly serious! 2025 was a hideous year! Not because of Freddie. Freddie was an absolute legend…probably healthier and stronger than he’s ever been. It’s everything around him that’s been a nightmare. He has been let down time and time again and quite frankly we’re sick of it. So we’re not gonna idly sit back and watch people we know spewing anti-disability and anti welfare bulls**t on social media…that’s how you’ll find yourself blocked. We’re not gonna accept half baked promises anymore from people in power, or people in offices who just see Freddie as a name on a list or an NHS number.

This little boy is the kindest, bravest, most loving soul you’ll ever meet. He deserves the world and so much more.

He may non-verbal but he has a voice. Andrew and I are his voice, and we plan to scream and shout until he gets what is needed. If that means more people get told to f**k off then so be it!! He’s my sunshine and he deserves everything in the world.

Happy new year everyone and get ready to hear me roar! 🦁

29/12/2025

Happy new year!!!! 🥳 Here is Freddie’s year in 20 seconds! #2025 ❤️

24/12/2025

Merry Christmas everyone from my family to yours!

24/12/2025

22/12/2025

Just a quick post to wish all of our family, friends and followers a very happy Christmas. I hope your festive season is full of love, laughter and happiness. (Again I’ve not sent out cards this year due to lack of time.)

I would like to take a moment to say that as you’re attending a Christmas night out, enjoying your Christmas dinner, opening the second or third glass of wine, watching the excitement of children unwrapping gifts, spare a thought for families like ours. Christmas looks very different for us. As well as all the ‘normal’ Christmas prep, I have the added stress of making sure Fred’s meds won’t run out & equipment is stocked up. Therefore as well as all of the usual Christmas madness, we have boxes and boxes of medical supplies, extra meds to find homes for.

Often I eat my Christmas dinner cold because Fred has needed support.

We don’t drink over Christmas in case of a medical emergency.

We do our unwrapping while Freddie is still in bed, to save him getting stressed and overwhelmed by the madness of it all.

Overall though, Christmas fills me with anxiety every year because I know that the likelihood of Freddie becoming unwell is high. Plus all the support that we have to help keep him out of hospital is not available. Even now, while Freddie appears relatively healthy, I’m riddled with anxiety.

So spare a thought for families like ours this festive season.

Even though these days I’m not a fan of the festive season, I’ll always do what I can to make it magical for the children. And I really hope you all have the most amazing time. Much love to all! ### 🎄🎅🎄🎅