Twenty One

I couldn't let today go unmarked on Charlie's News. 

Twenty one years ago today, a blond-haired, blue eyed baby arrived in the world, and what an amazing rollercoaster ride it has been ever since. 

We didn't dare dream he would see his first birthday, let alone his 21st. 

And now he's in his final year at drama school in Liverpool, making plans to move to London next year, forming production companies, auditioning for shows and living a life fuller than we ever hoped for - all the while giving hope to other people whose children have been given a similar diagnosis. 

His heart is still serving him well and we all try to look after it as best we can. 

We could not be prouder of our boy - or I guess I should call him a man now. 

Before he was born I just hoped he would be well enough to be hidden within his peer group, that he could be an average boy. 

But he is not. He never has been. 

He has trodden his own path from the start, and we have followed in his wake, supporting when needed, but mostly just cheering him on, with full hearts and full eyes. 

As I read somewhere not long ago - why blend in, when you were born to stand out?

Keep blazing a trail Charlie-Boy. 

You are so loved and we are so very proud of you. 

Is anybody out there?

Goodness me - it's been a while since I posted here!
Thought I'd write a really quick update, just in case anyone is still checking in!
I stopped writing so much when the kids started growing up, as I never wanted them to feel like my blog was invading their privacy. But I figure a little update won't do any harm!
So, Charlie is 20 now, and all grown up. His love for performing and the theatre has grown ever deeper over the years, and he decided that was the direction he wanted to go in after leaving school. He applied to a number of conservatoires and drama schools around the UK, and against all odds, he was offered a number of places at a number of different schools - including his dream drama school in Liverpool. With only a 4% acceptance rate, it was certainly a challenge, but he's never been phased by poor odds, as his journey through life so far bears witness to! So he is now half way through his second year at drama school, and by all accounts is doing really well - gaining a first in his most recent set of marks.
Heartwise things are steady, which is something we remain very grateful for. He moved up to adult care from paeds when he was around 17 - it was delayed because of Covid. It does make things a little more complicated as he has more ongoing monitoring now he is an adult and his care is spread between a number of different medical centres, but he has taken everything in his stride.
Rosie is 12 now, and started at secondary school last September, where she is thriving. She's had hundreds of merit marks already since she started, and is throwing herself into everything - netball club, choir, drama club, and is also learning piano and drums. She has picked up at the local theatre where Charlie left off, and loves the Musical Theatre class there. She's also a member of the regional youth choir where we live, so she has plenty to keep her busy!
Both my kids are taller than me now, so I'm doomed to be the short one in the family!
I don't have any recent pics of the two of them, but I might pop back and post one next time Charlie is home for the holidays.
I don't know if anyone will read this, but if you're out there - I hope you're all still doing well!

Merry Christmas Everybody!

Merry Christmas folks!

Sports Day

My best girl at her post-Sports Day picnic!
Fabulous day for it - and all the better as far as Rosie's concerned because I brought her egg sandwiches! (They're her favourites but far too stinky to have in her lunch box normally!) I even gained some 'good Mum' brownie points by taking her an ice lolly in a chiller bag!
Roll on the summer holidays!

Gappy smiles!

Rosie was very excited to finally lose her first tooth on Saturday morning, and even more excited to leave it out for the tooth fairy on Saturday night!
Can't believe my girl is losing her baby teeth - it doesn't seem five minutes since they were arriving!

Yay, no stabilisers!

We finally bit the bullet this morning and took the stabilisers off Rosie's bike. 

An hour later, no grazes at all and she's off like a rocket! Have posted a link to a little video below. 

Well done Rosie-Pie, that's another life skill you can tick off the list!

https://youtu.be/obHm8FbW564