Life with Lennon

Going to be really fun today with no internet all Lennon wants is Fatboy Slim on YouTube all day everyday and sky internet is down 😭😭😭😭

Well finally had CIN meeting and think it’s gone well they agreed overnight respite out of house was needed the min is 28 nights a year which I thought was excessive but they think even more than that is needed 🤷🏼‍♀️ but we will see as I only want maybe 2-3 weekends a year so I can start to have some time for myself and go out ( though I’ve no friends to actually go out with 🤣)
they also agree I need personal care as well as his outreach care during the holidays so they are going to look at sorting that out and putting on 2 staff members during the holidays so I don’t need to be the second person they realised when I asked them to help me change him as I’ve had no care today and they were like how are you managing they couldn’t believe how hard it is
Now talk is cheap so we will see what is implemented and how long it takes

What it’s not

Yes, Mowat-Wilson Syndrome is a ‘severe’ to ‘profound’ syndrome. No, MWS is not a reason to throw in the towel, lose hope, lose faith in humanity or the gods above, or lose your relationship with your partner. As we’ve said in our ‘About’ section, MWS people have personalities we can all learn from.

MWS people will not cause the next nuclear war, invent a lethal virus, send rockets across a strip of land in the Middle East, or insist on mining fossil fuels despite the global consequences. MWS people will not talk about you behind your back, criticize your work performance or make you feel inadequate about your salary. They will not covet attention, engage in violent behaviour, break hearts or embezzle funds then try to cover their devious tracks.

However they will love you for who you are – whether you’re a mum, dad, relative or carer. MWS people will reach out at the most touching times and grip your hand so tightly you feel they’ll never let go. They’ll smile at you despite the fact that you know they’re hurting physically. They’ll appreciate you being there to touch heads and have a cuddle while watching TV. They’ll make you feel like you’re the best person in the world, and they’ll be genuine about this. There’s no BS in MWS.

They’ll love you always. Totally and unreservedly.

This is no mean feat. Remember, many of our much-feted ‘genius’ personalities have failed in one or more of these areas.

So be sure to smile back and enjoy the time together. It may not be the path you imagined, but it’s still a very rewarding path you’re taking together, and that path is rich with roses. You just need to recognise them, sometimes through the vines, nettles and thorns, then take time to appreciate them.

It’s coming up to holiday season
Please buy your kids bright coloured swimsuits 💛💚🧡

Testing out his new all terrain wheelchair hoping we can get near to the seals 🦭 🩵🩵

How beautiful are our Easter cakes by NLW Creative Gifts can’t wait to get to the cottage and sit in the garden with a cup of tea and some cake ❤️❤️

I have cried so much this morning
It may seem strange crying over someone you didn’t really know but I know how much Kelly must of been hurting
I know how she felt having a disabled child who needs everything doing for them and being so worried about them you can’t sleep you can’t eat you can’t function and begging for help and getting nothing back from the government who is meant to help you I remember a time I was scared to cook as I was so tired I was worried I’d fall asleep and burn the house down
Parents are screaming for help we are begging and we get told there’s nothing available when in fact there is it’s just so hard to get we stop fighting for it
I’m so sorry the system has failed you and your boys
I’m sorry 💔💔💔
Rip in Kelly

Hey if you don’t already have SHEIN please can you download it from this link so I can get a point to win 300 credit be fab to grab Lennon’s clothes
Thank you 💙💙

A great chance for both of us to get up to ￡300💵!! Accept my invitation by searching this code in the SHEIN APP :
https://shein.top/smhvvfu Please Help me WIN ￡300 CREDIT!
kskp71

happy-flip

Lennon is still poorly it’s going on 5-6 weeks now he still has diarrhoea still not settling it’s just not fair the poor lad is missing his friends and teachers at school 💔😢

Pops is super hyper focused on Anne Boleyn atm so that’s who she wanted to dress up as for world book day 👑

Been trying to get hold of Lennon’s social worker since the first week of January and had zero response
I’m exhausted he’s still not back at school and I need some extra hours it’s an absolute joke I’m not ok 😭

This boy of mine is going to make me bald
He’s absolutely fine in himself but he’s now got bad diarrhoea again and he’s been really sweaty he seems happy enough though and still drinking his milk though still no solid food 😢

A wise person once told me it’s ok not to be ok and that is something that has got me through the years
Rare disease day is so important to not only spread awareness but for those parents out there who are only just getting their children’s diagnoses if they see this post and realise they aren’t alone then my job is done

For anyone struggling please my inbox is always open if you need advice if you need help if you want to cry if you want rant I’m here no judgement ❤️
Having a child with rare illnesses syndromes and diseases can be extremely hard but you are not alone
You are allowed to upset you are allowed to grieve the life you thought your child would have it’s ok I promise
I’m also happy to answer any questions anyone has nothing is off limits I love speaking about Lennon and sharing him with the world
Please feel free share and spread awareness 💙💙💙

Happy boyo he’s managing to keep small amounts of his milk down so that’s a good sign hopefully we can go home so I can manage him there
❤️❤️

Lennon’s fast sleep bless him waiting on plan from drs as to what they think is wrong and how to treat it the nurses as always have been fab and are trying to figure out how to make Lennon safe in the beds as always they have zero safe beds for disabled children in any East Lancashire Hospitals NHS Trust hospitals which in 2024 is sickening it’s made even harder as Lennon has to have his room so there’s not anyone around so I can not leave him alone at all as he can easily fall out of the beds which when you need the toilet is a nightmare but of course the nurses and HCAs are helping as much as they can do but it means I can’t sleep as they can’t be with him all night so I can sleep 😴 and I’m absolutely knackered 💤

Poorly baby waiting for dr to come he’s got low blood sugar high hate rates and and now a low temperature 😭 hopefully they can find out what’s going on cause I’m stumped I’ve tried everything I can think of to help him at home but nothings worked 💔💔💔

Well big seizure today for little man bilith is looking after him the only time the cat ever goes near him
Is when he’s really poorly
Hopefully he’ll sleep it off and feel better later 💔

4am colostomy bag explosion 😢 leads to bath for this little one now watching his Fatboy Slim and playing in his bed fingers crossed he’ll let me get a couple of hours sleep 💤

Cuddles with mummy for little one still poorly 😢