Happy New Year!! … and also, Merry Christmas? I hope yours was as lovely as ours. I managed to get one picture of the boys together…
…and Baby Riley legitimately looks like he wants to punch someone in the face. Look at that mush! I think maybe he is sick of me being his personal paparazzi… but he’s just so god damn cute! Makes up for the fact that he’s an absolute menace on two legs…
Oh, and Danny Devito joined us for Christmas too.
My brother thought this to be the perfect gift for me… he* now lives in the Garden Bar (I mean, it’s a shed… but J turned it into a bar!) frightening away any potential burglars; and also our neighbour Sarah. Sorry Sarah!
Apologies for being completely rubbish of late in terms of updating the blog. But, if you follow our social media pages, you will have seen that young T has embarked on a rather epic challenge! This stemmed from a conversation about 5 days ago surrounding the absolutely incredible Sir Captain Tom Moore…
J and I were discussing the sad news that he had been taken into hospital with Covid and T was nebbing in on the conversation, asking who we were talking about. When we explained, he recalled seeing him on the news and voiced how amazing it was that he had raised so much money for charity. This then transcended into a discussion about T challenging himself to raise some money…
And so: 28 miles in 28 days was born! (To be fair, I suggested walking to the top of the street and back, but the boys wanted something more dramatic).
We were hoping that this would also help to strengthen T’s muscles a bit. As I’ve mentioned before, his mobility has taken a decline since Lockdown 1.0. It does seem to be having the desired effect though! He is doing soooooooo well! He’s completing a mixture of walking, self propelling his wheelchair and reclining (we take over for a little while when it gets too much). But, he’s managing to walk more each day, and the absolutely overwhelmingly fabulous part is how much money he has already raised for Ataxia UK (those who have followed us for a while will know how much this charity means to us).
We set a fundraising target of £500, and to be honest, we weren’t sure we’d even hit that as we completely appreciate that times are tough at the moment. But, blow me down and call me Charlie, he’s only gone and raised £2,157!! IN 4 DAYS!!! Honestly, I could literally combust with pride. Thank you to everyone who has supported him so far. Hopefully that money can go towards helping a lot of people.
This epic achievement also came with a small slice of heartbreak however. He was talking about the money he had raised and the impact it could have…
“It might help them find a cure Mum. Then I can be a professional footballer, cos you know that’s my dream.”
So many of our conversations about the future are becoming tainted with sadness as he begins to understand the impact that his conditions may have on his dreams.
I am the biggest advocate of ambition. I’ve built my career around the concept of inspiring young people to achieve their dreams; to push through barriers, and build the life that they want to live. This came from a solid foundation from my own amazing parents, who always told me to do whatever I wanted: as long as it made me happy. I, as many parents do, want the same for my own children. To give them a gentle nudge towards something that they are passionate about. Something that makes them want to jump out of bed in the morning. But T is becoming more and more aware, that some of his most beloved dreams and ambitions are no longer within his reach. He doesn’t want to play wheelchair football, he wants to play for Chelsea. It’s a hard pill to swallow, and hearing him say things like “Well, I just won’t be able to do that will I?”, and knowing you can’t just say “of course you can!” because you know it’s not possible; may just be one of the hardest bumps in the road yet.
But, what we can do, is be happy and positive! Just like T! So we are. (Although we, J and I, are also somewhat stressed at the moment too because life is just chuffing mental, there’s a global pandemic, our jobs are crackers, and we are trapped in a house with a tiny Dictator who likes to throw balls at our heads).
Anyway, in other news, HOME SCHOOLING.
Yeah, what’s that about? Well actually I am a teacher, so unfortunately I know all too well what that’s about…
T, unsurprisingly, is being a total legend about the whole thing. He sits at his laptop each day and squirrels away at his lessons. It’s hard for him, as he is used to one on one support at school, which we can’t give him. J and I both work… and then there’s the small matter of the teeny tiny wrecking ball that is Baby Riley (who we affectionately call ‘Squidge’, and so hence forth I shall now do so here too).
Squidge LOVES T. Like properly adores him. It is the loveliest thing to see. However, Squidge does spend a large portion of the day trying to jump on T/steal his stuff/eat his snacks/pinch his glasses… but thats what little brothers are for isn’t it?!
T did get rather upset last week though as, he dropped him.
Not as dramatic as it sounds.
They are both fine, thank goodness. But he tried to pick him up, completely over balanced, and then dropped him. I was at school and received a text from J to say that T was completely heartbroken. He really does have the biggest (but thankfully still not too big to cause any super serious problems yet according to the last scan!) heart, and he is the best big brother.
So that’s some of our news. I’ll update about wheelchairs and house adaptations on the next blog. You’ve probably all had enough of a ‘Riley Fix’ for one sitting, and J wants me to watch some scary horror thing on Netflix that will result in me hiding behind his hands and then subsequently falling asleep…
Thank you again to everyone who is supporting T with his walk. It really does mean so much, not only to him, but to us all.
If you would like to donate, his JustGiving link is:
*Danny Devito lives in the shed bar, not my brother. He lives in Japan.
I would like to dedicate this blog post to the incredible Sir Captain Tom Moore. Thank you for inspiring a nation; and thank you for inspiring my son. Rest In Peace.