Addy's Batten Adventure

01/06/2026

Sometimes after long school terms, very warm weather, and lots of family times, we all just need some time indulging in our own interests. This weekend

Hayley got the pottery wheel our and made some lovely clay creations.

Addy enjoyed a couple of shopping trips, lots of The Lion King in many different formats.

Samuel's broken collarbone is frustrating him so he gamed with his friends online.

And I spent time in the garden, and building a fish pond for Addy.

Many happy heads! 😊

30/05/2026

Changing needs, we've all got them.

No, I'm not talking about nappy changing, i'm talking about our everyday needs. The things that keep us being us, what helps us feel safe, what makes us happy - and this past week we've learnt 2 needs.

Addy has always been a "water baby". She was born in a pool (literally a water birth), she loved paddling pools, even last year she had a fantastic pool party, but something has changed. Over the past 8-10 months we've noticed a shift. As her eyesight has diminished and her dystonia has increased, she likes to feel more grounded physically. I.e. in order for her to feel safe, relaxed, and therefore in control of her flailing limbs, her NEEDS are that her feet need something under them, her hands holding/resting upon something, and a downward pressure upon her. It's not a preference, it's a genuine sensory need - and so therefore open water has become an unsafe place. When she can't recognise what is happening through sight, her other sences are heightened, and they tell her open water isn't a strong enough pressure upon her to feel safe. It was a kinda sad moment until I caught myself saying things like; "I need to: go for a run, have some space, get a drink, take a shower." And so if I can express those needs within me, why would I push my daughter into something that would cause distress for her.

And so a few days later I attempted another activity Addy used to always love...shopping at Tesco! The sights, sounds, smells, the holding onto the shopping trolley, placing things inside the trolley and then onto the checkout, before choosing a charity to put her token into. It's all activity which she used to love.....AND STILL DOES!

We had such a blast, giggling as she went, randomly calling people "baby" and pointing at them before laughing 😅, and just enjoying the cool air conditioning in the shop was as refreshing as the experience.
Lastly before we went home whilst Addy was using her token to vote for a charity donation, another young girl (possible 6-8yrs old) came up to me and said, "Would your daughter like my token as well?"
Astonished, I turned to her and said, "Oh it's OK, you use it."
No sooner as I finished, the girls mother turned to me and said, "No, Elsa would REALLY love your daughter to have it." 🥰

It was so touching that I introduced Addy to Elsa and she gladly used the voting token.

It's moments such as these at the shops that makes Addy's changing needs easier to cope with. The kindness and compassion of a stranger or the moments of simple joy amongst the mundane that make you realise we ALL have needs that change, and it's OK to embrace them.

21/05/2026

Well its been 3 weeks since we last shared our story about carer burnout, and let's just say it's a slow journey to recovery. Just like in the story of the tortoise and the hare, there is no quick solution to restoration when the mind is hurt, but it's largely consisted of eating and sleeping during the days.

Addy's sleep on the otherhand has once again deteriorated to 2.30am wake up's, and so as parent care givers often need to rest when the kids are at school to recuperate. Today however was no such thing as rest.

2 kids, 2 hospitals, 2 towns, 2 parents.

Whilst Addy was receiving her regular fortnightly treatment in Bristol, we picked up the phone from Samuel's school to say we needed to attend as he had been involved in an accident and the ambulance was on its way.

As I raced to the school (still unshowered, unshaven, and stinky breath that could match a bears), I thought about what could have happened. Racing into reception, I could see him sobbing and clearly in shock holding his shoulder.

Whisking him off to the hospital I could remember all my first ask training but little could be understood through the grimacing. A few hours later and xrays confirmed he has a 90% break to his his collarbone and conversations with orthopaedic consultants need to be had next week.

And Addy???? Well she's doing ok. At each treatment the nurses draw out a small amount of CSF (Cerebral Spinal Fluid) to check in her health and despite an unusually high level of red blood cells in her sample (which is believed to have been an anomaly) she is doing hunky dory.

Being a parent is the same whether your children has disabilities or not, recovery sometimes just needs to wait.

02/05/2026

VOLUME UP ⬆️
Sit back 🪑
And feel free to smile 😊

I mean how else could you not smile along with this girlie!

One of the things Addy does get enjoyment from is the screen like everyone else. And I mean who doesn't like a the illiterate scout leading dog, Hey Duggee!? Despite not knowing how much, we are just so glad that at this moment in time she is still able to make out some of the screen.

30/04/2026

It's been a while since we last posted, almost 3 weeks infact. Not because we haven't had lots to update you on, but it's simply been too hard to write on numerous levels.

Whilst there were smiles on the photos of Addy's birthday, it was actually one of those moments that will feel like a critical point on the regression timeline.

For years, all Addy talks about is cake. Cat cake, lion cakes, Disney Frozen cakes, dog cakes, cakes cakes cakes. Hayley even made her a laminated book of all her past birthday cakes! What Addy is doing by talking about cakes is she is telling you what kind of birthday cake she wants next! But this year things were different. Despite talking to Addy everyday for a week that her birthday was approaching, when we presented her birthday cake to her we expected a gasp and giant smiles, but nothing....
It wasn't what she did that shook me, but rather what she didn't do. She didn't gasp, she didn't smile, there were no giggles of excitement or trying to pull it closer; just a blank look. Almost a look of utter bewilderment and confusion. Over the years we have noticed that unless events are repeated almost daily, Addy's recognition of the situation has become more distant in her memory and therefore less significant to her. In this moment, it was is she had forgotten what a birthday was. Is was a lack of understanding of what the implications were.

The rest of the day almost seemed like an event that we did for ourselves and Samuel. Like we went through the motions because we wanted to mark the occassion about her, rather than something she really cared about. We opened the presents with her...or more often FOR her. The reality is, there are fewer and fewer things she truly enjoys.

Since then we've been under greater and greater stress. More than we have ever been under and as a result are psychologically exhausted - or atleast that's what the Dr has labelled it when I visited him. It's like we'd have the impetus to do something, and when you get up the biggest wave of "Noooooo, I don't want to...I want to curl up in a dark room" kinda feeling floods my head. It hurts inwardly, it causes the drive within you to stop.

This week I've been so glad for a slower week and have had to "choose to only do the necessary" because otherwise it's too overwhelming.

The unrelenting stress of a parent carer is real, and psychological exhaustion cripples.

10/04/2026

TODAY I TURNED DOUBLE DIGITS!

HAPPY 10TH BIRTHDAY ADDY!

There were many lovely thoughts about today, many really tough ones, but for now its all about celebrating this gorgeous girl. We could NOT be prouder of who you are and the love you share with people!

You light up every room with you your RAR'S and laughter, kisses and cuddling, and you are the world to us.

03/04/2026

It takes that much.

It takes everything to raise a disabled child. It takes time, it takes sacrifices, it takes mental capacity.

It takes finance, you give up your jobs, your dreams, the Saturday morning lie it's, the sibling's football ball matches, the gym sessions, the £30k+ job you sought, the "Free-time", the late night conversations with your spouse in bed, the spontaneous s*x, the waking up in the morning while your child entertains themselves downstairs, the "good night" kisses as they put themselves to sleep - it takes so much.

We live a different life because we need to. We live a different existence because thats the one before us. Did we choose it? No. But we are completely committed to it because it is family. Family is everything and without it, life is nothing.

30/03/2026

WHHAAATTTT?
PLEASE SIGN AND SHARE THIS PETITION!

For individuals who are disabled in such a way that REQUIRE additional help with mobility to get around, there is a scheme called "mobility scheme" that help to provide vehicles to drivers or families who simply couldn't get around otherwise. I.e. Addy requires a WAV (Wheelchair Accessible Vehicle), so we have a van to simply get her where she needs to go. There is NO other way.

On the scheme you have to pay a deposit of about £10k-15k deposit that you don't get back, plus all travel benefits you might otherwise receive, in exchange for a 3 year lease on the vehicle; and then you start again all over again.

The lease used to allow mileage cap of 20k miles per annum (excess charged at 5p per mile), with all maintenance, insurance and tax covered, including travelling abroad!

5 days ago the government have announced that as of the 1st June it is changing to:
10k mileage cap with excess charged at 25p per mile, only 6 tyres changed over the 3 years, and you are not allowed to drive abroad unless you pay for a specific addition on top.

For those who are vulnerable already, this seems so so wrong. For families such as ours who travel to hospital every fortnight, thats 2700 miles simply travelling to hospital treatments! So we could be down to 7300 miles.
Minus 5500 miles per annum travelling her to the ONLY school that is available to her leaves 1800 miles for the ENTIRE year to play with....or to put it another way....you would only be able to drive an average of 34 miles per week doing normal life i.e. shopping, seeing family, going to the park, other required therapies, appointments etc before you are charged 25p per mile!

For a Labour government who's past reputation is to build society by starting with the most vulnerable - this is shambolic!

Therefore PLEASE SIGN and SHARE this petition to have this argument heard in the House of Commons



https://petition.parliament.uk/petitions/752400?fbclid=Iwb21leAQ3qo5jbGNrBDeqiGV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHviGNVpShwZVcaaWka6jKVmYpmQrWKldjl1yMeXr42N6PnaAxrAY8dXKKSyO_aem_TEr3ygjE4Er98vEcjAZnPw

The recent budget has announced taxes on advanced payments and a decrease in mileage allowances. We believe this is unfair to the most vulnerable in society and could affect their independence.

24/03/2026

Today's Adventure started with Addy waking at 2.20am for the day. She requires zero caffeine or energy drinks, she keeps going, and we were back at hospital again.

Last week she had the casts on her ankles. Thursday night she had one off. Today they took the other off. In essence the muscular skeletal team believe that "option A" isnt working because Addy has too many involuntary movements and so the cast it simply creating discomfort rather than helping. As soon as we took the cast off...ping, her ankle turned inwards.

So....option B - which we learnt whilst at hospital is to have xrays and scans to see whether botox is an option, however this will likely need to be done under a general anaesthetic. In the meantime Addy will have to wear splints throughout the night (if she'll tolerated them), and we'll see what the muscular skeletal clinic holds for her in May.

This is how she actually attended achool today though as we hadn'tanticipated them not putting a cast back on, and also she had a small pressure sore on her ankle that we wanted to allow air to. 😅😆

It's a good job anything goes at her school.

21/03/2026

Today's Adventure - Running 5KM with Addy 👩‍🦽🏃‍♂️ and the kindness of a stranger.

PLEASE SHARE AND HELP US FIND SOMEONE CALLED STUART or STEWART...who we passed on Queensdown Drive today in Swindon.

Addy loves being outdoors but half the barrier to getting her out lies in simply, getting her out. For example it took a full 45 minutes to get her ready to go, despite being completely dressed and fed.

Now I love to exercise and despite being built for short distances, I enjoy feeling that post-run letdown in the muscles, and probably smugness of I'm completely honest. Today whilst nursing a niggly knee, I thought, why not get Addy in her outdoor buggy and run down the 5KM cycle path - something I've done many many times. Easy right?? Think again...

1km into it I had COMPLETELY underestimated the extra effort it would take to push Addy in her buggy - despite it having bike wheels. The lack of swinging arms for momentum, the 40kg of Addy plus the weight of the chair...it was a struggle, and my heart rate of 190BPM told me so...BUT....

Just when I was about to stop to turn back, a gentleman coming the opposite direction raised his arms into the air, started clapping, and shouted "well done, keep going!"

I don't know what he saw in that moment or what his thoughts were, (probably concerned that I was about to collapse in a sweaty mess) but it HUGELY encouraged me to keep going! In that moment I was SO close to give up, turn back, give in to defeat, but he gave me the strength to keep going and complete the run with Addy. And so today, Addy completed her first 5km run (push), and I completed my first with her alongside me 🥰 something that filled me with SO much joy today!

To my amazement we actually passed each other again, I thanked him, shook his hand and asked his name as we passed. He was called STUART or STEWART....

Please help us find this gentleman so I can pass on my heartfelt non-sweaty, huffing and puffing thanks.

Encouragement can often take us by suprise when we least expect it, and kindness of strangers always goes a long way.