Greetings from the Riley’s! Apologies (again) for the months which have passed since my last blog. One minute it’s November and then POOF it’s May! Happy New Year! Where does the time go?!
We had a wonderful Christmas full of family time and laughter. You may recall from my last post, that Squidge had been cast as ‘King 2’ in the Nativity and was very excited about his performance. Nightly rehearsals took place in the bath (clearly he appreciates good acoustics at a young age) and “I BRING YOU FRANKINCENSE” could be heard 3 streets away.
In preparation for said Nativity, Squidge first had a concert, which would give him the opportunity to show off his singing. He was desperate for J and I to attend, which we did. He was beyond giddy when he saw us, and I had the tissues at the ready (as I am an emotional foof and cry at everything). He skipped up onto stage with the rest of the children and the jubilant tones of ‘Jingle Bells’ began. As the bells jingled however, his bottom lip jingled with it…
Approximately 17 seconds into the song he had to be removed from the stage due to the torrent of tears which were now streaming down his face. Next up, his solo. Yeah he didn’t even make it onto the stage for that one. As luck would have it, his class teacher was on the front row and scooted over to him for some reassurance. He managed to make it onto the stage (albeit at the very edge, holding his teachers hand, who then had to awkwardly sit herself on the steps – bless her) and there was some possible mouth movement to ‘Sparkle and Shine’. Although he looked so unhappy he could just have been hexing the audience at this point. It was less ‘festive merriment’ and more ‘Nightmare Before Christmas’.
And then, but a week later, came the Nativity.
I had spoken to Squidge’s lovely teacher the day before the performance, and she shared my fears that ‘King 2’ had most definitely become ‘The Reluctant King’. Squidge had begged for J and I to sit at the front, and his teacher agreed that this may help with his new found stage fright. I did, however, get a call later on to inform me that he had been fantastic in the dress rehearsal to Class 4, so we were all feeling very positive about the next day, and some of King 2’s excitement returned. Hurrah!
Show day dawned, even the shit-bag Elves (if you know you know) were bigging him up, and had left him good luck messages and treats. He trotted off to school very excited.
It is worth noting at this point, that there were 2 performances of said Nativity, as there were 90 children in total performing (there are 3 FS2 classes at Squidge’s school) and so to accommodate the families there was a morning and an afternoon show. J and I had tickets to the morning performance.
We arrived and took our assigned seats on the frow. Out came King 2, looking smiley and happy. We waved, he waved, all was well in Bethlehem. Until the music started that is. From his bench at the side of the stage the tears silently flowed and no amount of over exaggerated smiling from me and J, or mouthing of words, could stop them. We thought that perhaps we were making him worse, so we started avoiding looking at him in the hope he calmed down… which just made us look like bloody nutters to be fair.
The story began. Hairy Mary and Joseph went to Bethlehem (or rather were dragged there by a very excited donkey) and the baby Jesus was born. The Shepherds came with their 36 sheep (it was a cast of 90 after all) and then it was time for the Kings, and their camels. King 1 (and his camel, Samuel) made their way onto the stage. King 2, however, froze at the edge and refused to move. Camel 2 (Elliott), who was very keen to get to the stable, squeezed behind him and forcibly moved the Reluctant King to the town of Bethlehem. Fair play Camel 2. Fair play. There was no way he was missing his moment. We leaned forward, eagerly waiting to see if the most practiced line in history would be said, whilst obviously trying not to look directly at King 2, and instead staring at a piece of wall, and we heard…
“I bring you Frmmmermmemmerm”
It was said at a volume only mice could hear. I like to think that was method acting really as there must have been mice in said stable when Jesus was born and it is important all heard the message.
And then. King 2 ran off stage.
Bugger.
Turns out he needed a wee. So, one quick whizzle later and The Reluctant King was back on stage. Well we think he was, we still couldn’t really look at him.
I’ll be honest, it was an emotional rollercoaster for all involved.
Grandma and Grandad were attending the PM performance. I rang the In-Laws on my way back to work to warn them. Best to be prepared and all that. My lovely M-I-L promised to update me on the emotional damage King 2 sustained from performance 2…
Which, it transpired, was none.
He turned into Leonardo Di-bloody-Caprio. He sparkled and he shone, he sang ‘Away in a Manager’ with gusto, and “I BRING YOU FRANKINCENSE” could be heard from actual Bethlehem itself. A fellow FS2 parent described him as ‘a real stand out’.
So. Basically J and I clearly cannot watch him on stage in anything ever as we inflict trauma and despair. I may have to go in disguise…
And now to son 1! Health wise, T is doing well. Nothing to report on that front, all is much the same. It’s almost a year since his spinal fusion too, which is crazy! He also sat his first actual GCSE exam today (his school do a few exams in Year 10), which just seems to have flown around.
I’m not his favourite person at the moment as I am stealing his Playstation time and replacing it with revision. What a heartless individual I am, trying to help him achieve good grades. How dare I do such a thing!
Teenagers are tough and cause very conflicting emotions. I fluctuate between being so incredibly proud of him… and then wanting to cut up all of his Chelsea shirts and flush his PS5 down the toilet because of his sass. One thing is for sure, J and I are now regretting not installing sound proofing when we had his room adapted. Why do teenagers insist on shouting?! And why oh why, do they take every conversation on speaker phone?! Holding said phone to the ear clearly requires too much effort…
We are still struggling to motivate T to do, well to do anything to be fair. Get up, eat, shower… all require much nagging and a LOT of huffing and puffing on his part. We have a Reluctant King and a Reluctant Teenager. For someone we love so much, he is regularly wheeling on our last nerves at present. That being said, he is 15. I fear this is not unusual. He is more engaged with school though and is doing well – even attending regular revision classes. He is also feeling more positive about the future, and his most recent iPASS report reflects this, which has made both myself and J feel relieved and very proud. He is still refusing his assisted seating though. Preferring instead to sit in pain in his wheelchair (he has had a new wheelchair back on order now for 4 months… wheelchair services are useless and seem to have no qualms about leaving children in pain with poor posture support). This is one hurdle we just cannot seem to get over. We’ll continue chipping away and hope for the best.
T turned 15(!) in March, and as he has had such a challenging year following his surgery we wanted to do something special for him. He and J went on a lads trip to Germany to watch Bayern Munich. They had THE BEST time (which I’m hoping was due to the trip and not just being away from me and Squidge!)
The disabled facilities at the stadium were amazing, and I think it really helped to show T that he doesn’t need to limit himself. They are now already thinking about where to go next year. J is going to do a guest slot on the old blog to go into a bit more detail about their trip.
J and I also managed a few days away ourselves, which was much needed. After a very tough year, we have neglected time together in favour of keeping everything else afloat. Our trip to Krakow was full of laughter and was just the tonic we needed.
In other news, T has a new challenge! You may (or may not, as it was ages ago) remember that back during lockdown, T completed a challenge where he walked a mile a day for the whole of February raising over £8000 for Ataxia UK. A couple of weeks ago I found an article on the Ataxia UK social pages about a man with ataxia who had completed the London marathon in his wheelchair. He is an absolute super human rockstar hero. I sent the article to T who was equally impressed. I asked if he fancied challenging himself to do something, and suggested doing a charity ‘wheel’ of his own. He agreed (which I think seemed like a good idea to him at the time) and as such, T will be completing the Jr Great North Run in his wheelchair (accompanied by yours truly who can’t even run for a bus) in aid of the great Ataxia UK. We have done a challenge together once before and we were given the nickname ‘Waddle and Wheel’. So we’re back! The great return of Waddle and Wheel! Please do feel free to donate (link at bottom of post), as this will really help T with his motivation and training.
You might remember from a previous post, that I discussed some recent personal struggles I have had, and how I have been seeing my counsellor, Maureen, for several months now. Well it transpires that Maureen isn’t actually her name. So that’s more trauma to process there. It’s actually Noreen. Noreen, if you are reading this, I apologise whole heartedly for mis-naming you for at least 4 of the 6 months we have been working together. As someone who receives emails at least twice a week to ‘Lisa’ when my name is in fact ‘Lucy’ I understand the anguish this brings.
I actually finished my final session with our Noreen today. Which, does not seem to be great timing as I’ve had a very low few weeks. Something which was not entirely unexpected sent me a bit wonky, and I’ve definitely not been myself. But, I do feel a bit brighter this week and I’m back to my old mantra of ‘everything happens for a reason’. Even if the reason isn’t clear right now, I’m sure it will be in time. Noreen also suggested some more Grey’s Anatomy time (I mean she technically phrased it as “time to stop and do things you enjoy on your own”, which I have fully interpreted as several hours at Grey Sloan responding to hypothetical traumas and learning how to be a Cardiothoracic Surgeon.
As quite a self aware person, I can clearly see why I feel the way I feel. I just can’t seem to regulate things as well at present. But I’m formulating a plan as we speak, and I am ‘owning and acknowledging the moment’ (are you proud Noreen?).
In other, and final news for today:
SQUIDGE CAN RIDE A BIKE!
My PTSB is no more. Many tears have been shed at this new milestone, and the weight of worry is a little bit lighter. Anneleise, you were right. It was f***ing hard to do, but he did it in his own time. Although this certainly does not mean he’s ataxia free, it is definitely a two legged pedal in the right direction.
So on that sunny note, I shall leave you to enjoy this overcast May day with some photo’s of recent happy times.
I promise to catch up soon – no more 6 month gaps!
All our love,
L, and the Riley’s
XXXX
p.s. T’s donation page is: https://www.justgiving.com/page/greatnorthwheel?newPage=true
The Life of Riley's 