It’s just a dream come true

 Today is the day Bella came home with us. 

With as many years to her name as Smalley, at 54cm in length and weighing in at a whopping 926g Bella is an old, fat bearded dragon. She is also a real character. In one afternoon she’s moved home, snuggled happily on the sofa, been prodded, stroked, weighed and measured and happily clambered around her enclosure. 

She’s also made a little boy’s dream come true. A little boy who has moved his bed so he can lie near her tonight. And who has settled down for the night muttering “I can’t believe I get to keep her. I can’t believe she’s really mine.” 

At 10 years old she’s pretty advanced for a beardie so it’s hard to know quite how this journey will go. But she’s here, she’s active, she’s fascinating and she’s cheered Smalley’s heart. 💚 

Sometimes I wish I didn’t have ADHD

Tonight’s been rough. 

So much of my conversations can focus on how tricky it can be parenting someone with neurodiversity. I get weekly emails from ADHD experts talking about reframing language and building resilience as parents. And, as is so often the way, we are the centres of our own universe and focus in on our experience. 

Tonight, seemingly out of nowhere Smalley said he sometimes wishes he doesn’t have ADHD. That he thinks he’s too different from other people. That it makes it hard for people to understand him. And that he feels his ADHD is getting worse and worse 

There were tears. Lots of them. Some held back, some he allowed to flood forward. 

As a little unit, Smalley, Dad and me, we talked about medications, friendship, achievement and development. We talked about effort, energy and identity. We held each other right, we thanked him for his courage and his honesty. 

Through his diagnosis last August, the move to meds in September, the check ups and discussions with teachers we’ve taken the approach of honesty and openness. But I do worry at times that can be too much for a young  brain. It’s no small thing to differentiate labels from identity and our differences from the differences everyone feels. 

We ended today’s talk comparing ADHD to the scar on Smalley’s arm. It’s part of him, but most people don’t even know it’s there. It shapes him, but doesn’t define him. Sometimes he’ll acknowledge it, but mostly it just lives alongside him. A tiny part of a much bigger more beautiful whole. 

Hedgehog encounter

Smalley was this days old when he met a hedgehog in the wild. 

We were out on the evening dog walk, boys with wizard staffs in hand, and almost home when Smalley spotted something scurry across the street. At first he thought it was a rat but was thrilled it turned out to be a hedgehog who kindly stayed still against the wall allowing Smalley to get so close he could touch it. 

We broke up some dog treats (organic and wholesome) and he put them down for the hedgehog then retreated back so as not to scare the little creature. Curiosity soon got the better of him. This led to a very gentle creeping forward following by huge jumps of joy, arms spinning, silently screaming with happiness as the hedgehog had grabbed the treats with its front paws and within two minutes had scoffed the lot. 

Overwhelmed with happiness at the whole encounter some tears of joy flowed when we made the final part home. Happiness comes by way of healthy, hungry hedgehogs. 

Childhood dreams

 Bean came home from art activity on Thursday with a telescope made from a repurposed kitchen roll and some wrapping paper. It was like he’d won the lottery. Or as he said it: “I can’t believe it. It’s always been a childhood dream of mine to have a telescope made from kitchen roll and now I have”. 

Clearly the toilet roll binoculars we made when he was 2 weren’t as memorable for him as they were to me! 😂

I feel like I’ve had a real upgrade

Yesterday we went to the independent children’s bookstore in town to spend Bean’s birthday vouchers. Inevitably we spent twice the amount we had vouchers for. Inevitably he chose

a book I thought wasn’t the wisest choice; it’s from a series I don’t know and is a chapter book which he is still far from reading. Or so we thought. 

We were out for dinner and the boy just sat at the table and started reading. He wanted to get to the end of the page and just cracked on. Beyond himself with pride when page one was done, he went onto page 2. And continued until the whole first chapter was done, breaking only to ask me words. 

This morning, he was reading again. Breaking only to look at a different book he’d bought. 

This is not normal behaviour but he is so impressed with himself and I love he feels rewarded with self-annointed happiness for his efforts. At the table just now he said: I think I’ve grown up. I feel Like I’ve had a real upgrade. If I were a computer game I’d be up two levels with this reading. 

Sneezing rainbows

 Bean’s school hosted a triathlon and colour run today. The former for the sports lovers, the latter for the Astro charity fundraiser. 

Bean had no interest in the triathlon as he hates competitive swimming. This was hugely relieving as taking part would have forced me to split across Salisbury. However, the colour run caused great excitement - more so than playing football.

We rocked up after Bug’s rugby, set up the sweet stand and spent half an hour negotiating with children over sweets and chocolate before our colour was called and we headed to the start line. 

Bean and I ran the course holding hands - minus the corners which we decided were best for skipping. As we ran (or more accurately jogged) around he made my heart swell with constant reference to how happy he was to be doing the colour run and how much he loved that we were doing it together. 

Bug was on colour throwing duty having knackered himself at rugby. He took this quite seriously when we passed, leaving his post to stand in front of us and chuck a cup of orange powder right at us. The Head of Sport attacked with equal vigour as did my friend Edd when we got to the end of the course. 

I was a sceptic going in and thought I could really have done without it, but we all had the best fun, in the September sunshine with our friends. I’m so pleased we stayed the course and took part! 

Let me tell you about this guy

This guy went to school on Monday looking pale with a tinge of grey and threatened to be sick about three times as we waited outside our friends house on the school run. He wasw quiet, kept closing his eyes and looked almost identical to the last time he had concussion. Had that been a possibility we’d have been at A&E. 

This guy let me drive him to school that morning and whilst he insisted he’d be fine going in I spent the whole morning staring at my phone waiting for the call from school saying he was really ill, he never should have been sent in and I was a terrible parent for not keeping him home. 

The call never came. At 5pm he messaged to say they were just leaving the cross country race he’d been at and half an hour later he comes out of school, happily chatting with his friend, a healthy glow across his face. 

How are you, how was the race I tentatively ask. “It was really hard” comes the reply. 

“I’m really sorry buddy, did you manage to complete?” 

“Oh yeah” he says with a shrug. “I came first. And our 7 runners all placed in the top 12.” 

That caused me to stop in my tracks, literally lost for words. How in the world do you go from grey in the morning to tired champ in the afternoon. 

Fast forward to this morning (and be prepared for some serious parent pride as my heart is bursting)  and the boy’s first time playing rugby for his new school. They’ve only had one games session so the teams were made up based on who put their hands up to play and whatever random order the coaches came to the list. 

The head of sport wandered between the games, another coach for the senior team took on the role of referee and the coaches on the sideline leading the team were three U7 kids. 

Bug loves his rugby but we knew secondary school would be a step up and that, just given the sheer number of children in his year group, it might take awhile for the teachers to see who is comfortable on the field and who needs extra support. Getting into the lead team for his year didn’t feel at all a given but, knowing the effort the boy puts into his games, we knew he’d be really disappointed in any other team. 

As it turns out, our fears weren’t warranted. Bean and I arrived late to the game having walked Alice. As we approached the side line I head the coach saying “this kid is unreal”. Every call from the sideline was praise for a break he made or a tackle he got. When the head of sport came over, it was Bug’s name the coaches shared with him.

I started talking to some of the other dad’s just as the boys broke for half time. They had no idea which child was mine, but started talking about the boy who was making every tackle and the difference he was having on the pitch. I got to humbly say “ah, that’s my boy, he loves his rugby.”

At the end of the game I found myself in a conversation with the referee and a teacher from the opposition who again praised Bug as the “stand out player” before they knew he had any association with me. When I conceded he was my son the referee said “well I told the other boys in the huddle; he’s the only one who knows how to get around the opposition. Follow him and do what he does.” As I said my heart is swelling for my boy who walked off the pitch with his coach shouting over “you’re definitely in the As”. 

The school is very clear - it’s a 7 year journey to the 1st team and your interest in sport and your body will change a lot over that time so this is one game, one morning. However, our fear was that his passion and commitment wouldn’t be seen amongst so much action and, so very happily, that fear got smashed! 

What a champ! 

First day of secondary school

 I'm not sure the reality of this has set in.  Bug was 70% excited, 30% nervous, left me the last few minutes of the walk and came out of school at the end of the day with the biggest grin on his face saying his new school is "amazing".  Plus summer has finally sprung so the walk to and from school was in the most glorious weather. And we marked the end of the day with a trip to the Bubble Tea shop.  Not sure you can ask for better than that.

All the cliches of "how did he get so old" have been said but actually, for me, I'm so bowled away by this boy every day, seeing him get to experience a new school and take it all in his stride with openness feels the most natural thing in the world. 

It turns out Bean was actually the saddest one.  It'll take awhile for him to get his head around not having his big brother at the same school as him and the reality of them heading in different directions each day. 

Looking sparky at 7:20am

So grateful for how close these two are

Setting off on his own

Solo end to the walk 

All smiles for pick up 

Symmetrical smile

The left tooth came out whilst tooth brushing on Tuesday night so now the gaps mirror each other and the boys can’t stop putting his fingers in his mouth to feel where the teeth once were. 

Bean has no illusions about the tooth fairy so enjoyed both saying “I know it’s you” before going to bed and then “thank you mummy” in the morning. 

Knowing it’s me doesn’t stop him from really spreading out his tooth pillow case under his normal pillow and making it almost impossible to reach. 

The tooth pillow is the same I used as a little girl. There’s something so lovely to me that my boys get to use something I used to put under my pillow as well. 

Bedtime buddies

 Bug helped Bean with his bedtime reading tonight whilst I got the hot water bottles ready. I walked past Bug’s room several times more than I needed to the picture of them both made my heart so warm. 

They’ve bickered a fair amount this evening but give them a task and the effort from both was outstanding. 

Having finished Goblyn Wood we’ve now moved to the Wizard of Once - queue lots of laughter as the boys tried to work out which character was most like them. 

Artistic fun

 Smalley has really taken to drawing recently. From sketching signs on the train to asking to copy images and drawing his own Ancient Greek army, we’ve seen a marked change in his confidence when it comes to art creativity. 

Today this came through with a request to sketch and then paint Salisbury Cathedral (why not?)! 

For a boy who used to be so quick to give up in this area because 

1. he couldn’t keep in the lines

2. he never felt his images were of value compared to his big brothers

3. he struggled to get his ideas onto the page

4. his perfectionism eroded all confidence and compassion for himself 

Seeing him choose to get creative and be pleased with what he’s achieved really warms my soul. My thanks to his art teacher at school who I’m sure has helped nurture this area. And my thanks to Smalley, for believing in himself that little bit more. He places huge standards on himself, and us telling him not to doesn’t really get us anywhere. As he told me today “I am who I am.” He’s got to work things out at his pace and in his way and I have huge confidence in him. 

Ego before dignity

 Jubilee weekend with friends, sun shining, chicken roasting and cricket fun in the garden. 

Seems the man decided to put his winning ways above encouraging a 5 year old to succeed! 🤣🤣🤣 poor Sebster 

In 36 hours we also went wading with thousands of tadpoles who nibbles our toes, skimmed stones, bounced on the trampoline, made a wish on a wishbone, played Herd Mentality, raced Mario Kart, met up with Bug’s favourite nursery teacher at the Hatch Pool, caught the worlds smallest fish, made assault courses, ate jelly beans and spotted bunting across the county. 

Wine was drunk, deep conversations were had, hugs were shared but so we’re giggles and happy half/term memories. 

Who’s a witch?

 

What a charmer 

Lava lamp

 So…I bought Bean a lava lamp today. Only when I got home and opened the box did the age warning on the information sheet make itself known to me. Apparently I’m 7 years early given the bottom of the lamp gets so hot it can burn if touched.  Oh well, it’s plugged in now so best thing we can do is move out of Bean’s reach.

I suspected the boys would enjoy it. I confess I didn’t quite realise how much chat, commentary and giggles it would bring from both of them. If this keeps up maybe I can claim the telly back and my own…? 

Also it only cost £12.99 from the range. Which likely means it will have broken by the end of the week, but we’ll enjoy it whilst we can. 

Saying goodbye to Percy part 1

 PLEASE NOTE - THIS POST CONTAINS PHOTOS OF A SICK DOG PAST HIS PRIME. DON’T FEEL YOU HAVE TO CONTINUE 

This post was written a year ago and has taken that time for me to be ready to post it. 

In October we noticed a limp on Percy’s elbow. After a bit of silliness with a not great vet our regular vet, Grant, removed the lump and took a biopsy of some additional bumps that had appeared on Percy’s shoulders.

In November we got the biopsy results back and,  what we had been fearing was confirmed, Percy had a very rare, very aggressive form of skin cancer. I took the call from the vet and did my best to keep balanced, asking the horrible question of how much longer he might have. Grant confirmed we were looking at just months. I called Mark and didn’t manage to be quite so composed on the phone to him but he was excellent. We told the boys straight away that evening and there were tears for all that night as there were, in waves, over the next few months. 

Once we got the diagnosis we were able to put Percy on steroids. Talking to our amazing vet friend and Percy’s vet we quickly discarded the idea of going through chemo; it would only have been palliative, the side effects were a map of difficulties throwing in questions about quality of life which just seemed pointless. 

I’m so grateful our friend warned us of the miracle work of steroids. Within 24hours his bumps had gone and his face, which had swollen significantly, returned to normal. It was like a cure and we had to remind ourselves it wouldn’t last. 

Percy died in February. Between diagnosis and his last day the illness took various turns. We dropped his walks to once a day after the two walks proved too big a struggle. In the last week, even his daily walk was just 10minutes long. We changed his food after his gut stopped coping and made him so stinky we had to open the windows or were in danger of loving him less. And we watched him like a hawk. 

We’d been told not to wait to for him to go off food as a marker for any decisions. Dogs don’t work that way. They will always eat. If they are at the point of losing their appetite you have pushed well beyond the chance of a painless or peaceful death. But to help his gut, we changed to four meals a day of super posh wet food only found in a pet shop 30minute drive from the house. And he loved that. For ten years we made this stubborn bulldog go for a walk twice a day, pretty much at the same time each day. And for ten years he acted as though it was some unpleasant, unexpected surprise every single time. Get the lead and he’d turn his back, call him to you and he’d act deaf. Not once did he voluntarily leave the house for a walk unless you had another dog with you. And Alice didn’t count. Change his meals to four times a day and the stubborn fool suddenly became the world’s best time keeper. We had an alarm at 11am and 3pm to feed him and come 10:30am and 2:30pm he’d start barking at us, from wherever he was sleeping, to let us know food time was almost ready. Never in his life could his brain take in walks but change to regular feeding and his stomach was more accurate than a digital clock. 

In the last month his skin became itchy. Having a home fire, which used to be his favourite thing, would make him restless as his skin was prickled by the heat. In the evenings he’d come and sit with us, push his face into my stomach so I could rub his chest, shoulders and legs. It was lovely, in the last month I packed in about ten years of snuggles but we knew this wasn’t Percy. Percy loved being next to people but quickly walked away after a minute or two of being stroked. You knew he was in his happy place when sucking on his Ted next to people, not sitting on laps or snuggling in. 

He stopped sucking Ted in the last week and that was one of the clearest signs we had that even our best attempts at offering palliative care were coming to a close. 

The other big sign came with his skin starting to break in the final weeks. Alongside the bumps, he just developed open sores. Around his hips and along his back. The skin got itchier and we had to cover the armchairs in duvet covers as he would rub against them leaving a trail of blood behind him. He slept in our bed for the last week of his life and we had to put a fleece blanket down to stop him bleeding over our sheets. Looking at them in the morning brought a wave of sadness and love as we faced the truth of his illness. 

In bed he would rest his head on my legs. As parents we do often get told we should cherish every moment which often feels an overwhelming ask. But those nights, falling asleep with the weight of Percy’s head against my legs of side is time I will always cherish. 

There wasn’t much weight on him at the end. From a dog who usually weighed in around 22 or 23kg, by the end he was more at 18kg. Whilst he was still walking every day, in the last month or so we were having to carry him up stairs. With Alice still under 1, bedtimes became shift work with M carrying his teddy bear bulldog whilst I took Alice. Both waiting patiently together at the foot of the stairs as they waited for us to put them to bed. Having to carry him downstairs was another marker that the final days were drawing nearer. I moved one of the dog beds under my desk in the dining room and enjoyed having the two of them sleeping by my feet through the day. Whilst he never loved snuggling too close to humans, he was hugely tolerant of Alice sleeping on him. And even more so of her ridiculous snoring which got louder the more you tried to shush her up. 

We had a vet’s appointment already in the diary for a week’s time and M phoned to let them know we needed to change it from a check up to have Percy put down. We’d done all we could and didn’t want to push him to a point we would regret. 

Teeth

Bean is losing teeth faster than I can keep track off. Just a few weeks ago both top teeth came out in quick succession making him the cutest, gappy boy you can imagine. 

Today he gave me a lecture on how wobbly his bottom incisor was and five minutes later presented it to me in his hand. Now I’m walking around with a tooth, trying not to lose it and having flash backs to when I was little and my tooth took an adventure down the air con vent. 

Now to dig out a £1 coin because somebody decided that we should pay for nature doing what nature should do.

And all of this to the back drop of Matilda songs which are constantly being sung in the house as we prepare for the school production next month.  It certainly adds yet more energy to every occasion.  

Pandemic life

Why hello covid. What an unwelcome guest you are. 

Our county has been doing pretty well. And the boys school managed a full 19 months without any covid cases amongst the children. This past week however, it’s spreading everywhere! 

After a call from Bug’s best friend’s mum we all had an LFT. That was negative but the next day Alby got spot checked after a boy he sat next to on the bus had a positive LFT. Bug’s LFT stayed negative but he had a slightly raised temperature so was sent home for a PCR test. Next day, positive PCR confirmed to a very bemused child that covid was in his system. And so the fun of daily lateral flow tests for us, hourly hand washing and constant surface wiping has begun. 

We’ve had 4 days in the house now and with school closed for half term preventing any fear of missing out, we’re doing okay. The walls don’t yet feel too claustrophobic - helped by daily dog walks and amazing sunshine. 

The only concern is the big birthday party due to take place the day after social isolation breaks. As we’ve had every day this week, we’ve got a plan A, plan B, plan C and plan D depending on the results of our daily LFTs. My friend (an infectious disease expert) had me reassured we’d by okay but as we now know a good number of double-vaccinated adults in the school getting covid I’m trying to stay pragmatic over optimistic. Keep your fingers crossed for us please!

Meanwhile Bean borrowed my red pen and came back with this picture for me so we might have germs but we also have all the loves …🥰

Imagination flowing with Bean at bathtime

 We like to make up stories. We each take a turn to add a line and see where we get to. 

This evening has seen us meet a clown fish called Jeffrey and his moray eel friend Jonathon swim to a ship wreck against the advice of their parents. In the shipwreck they meet a ghost pirate who shouts “shiver me timbers” (of course) and informs them that he can’t get into the afterlife until he finds his treasure which was left between two hills. They are just about to set off with him when some underwater zombies appear… 

That’s as far as we’ve got. Any help with what happens next welcome 🤣

Dog walk dangers

 Alice goes out with a group of dogs every week for a bit of socialising fun. And after each walk we get sent a batch of photos showing off the crazy antics of her and her friends. The dog walker has a real skill with photography and you can guarantee some ridiculous shots.  Today’s was the silliest yet… 

I’m just going to leave this here. 

Bean’s monster

 Bean has a doodle book which he is very excited about. 

Today he drew his monster which he loves the most. It has blood stained teeth, blood stained claws and blood stained toes. It does not have webbed feet. Doing the eyes as triangles was both clever and scary. Or so he says.