July 26th – Good Good Good, Good Donations

1999:  I slept right through until half four this morning, when I woke up in my own bed and was alive and kicking.  Mum still wanted to sleep and after several disruptions to her shut eye she shut her bedroom door in my face. Charming!  By the time she got up – 45 minutes later – we were back on talking terms.  I jumped in mum’s water and drank all her tea (except 3 mouthfuls which she’d managed to swig before I got my mitts on it – gonna have to speed up my tactics). Went to Edons and when mum picked me up she had a tricycle for me which one of her staff had kindly donated to our cause!  Mummy let me ride it out front for a while and then we went round to the back where I found her a lovely feather (the first of her collection) and it wasn’t long before the hose pipe came out.  I surprised mum by counting to twelve in the bath tonight, following which we both fell asleep on my bed at 7.15

2019:  A long drive from Lowestoft in Suffolk in Bala to Wales ready for my Snowdon run,  Staying in the home of a musician through Airb&b. The alarm is set for 4.40am. The day has come round so quickly and I am soo literally nervous and I have no idea why. I have absolutely smashed my fundraising target which currently stands at at £685 towards Crohns and Colitis UK, and now to absolutely smash this mountain.  Hopefully gonna be setting off at 6 am tomorrow and provided all goes well i’ll be returning at some point before 10 am. This is more nerve racking than when I was waiting to go for surgery. Time to show the world that us people with chronic, invisible illness are the most strongest physically and mentally set people! I’m not just doing this for me, but my friends, family and everyone in the invisible illness community. Thank yo to everyone who donated and thank you to my family who have come along with me  to be waiting at the end with a long, stiff drink!

#toddlers #childhood #mums #childminders #adulthood #crohns #crohnswarrior #notalldisabilitiesarevisible #ibs #crohnsdisease #mountain #snowdon#wales #snowdonia #trek #family #crohnsandcolitis #fundraising #lowestoft #suffolk

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July 13th – Kids Have a Smashing Time

1999: We didn’t get up until 7.30 but we still managed to get out for eight.  I did well with training today (once I realised Edon was still not going to relent).  Edon managed to keep me awake all day so that mummy could spend time with me tonight but I was a bit tired.  A man came round to fix the smashed TV tonight (oops) and after this I had a bath and by 6.30 was soundo on the settee.

2019:  Jump forward 20 years – pretty much the same really – apart from I didn’t pee everywhere, I had to go to work and the TV didn’t need fixing. Our lounge window, however, is a different matter – due to a youth and a football. Fancy doing something like that? Haha

#toddlers #childhood #adulthood #pottytraining #mums #tvrepairs #windowsandballs

July 6th – BBQ Weather

1999: Slept until seven when the alarm went off.  Didn’t sleep at all at Edons today and when mum picked me up it was reported that we had all been very hyper for the past hour and a half.  I was very excitable.  I played in the garden and distributed my sand everywhere but the sandpit.  After tea I decide to paint the kitchen window with my bottle brush and soapy water.  I think it looks lovely but mum reckons it might not look quite so lovely once it’s dried.  Had a bath and fell asleep cuddled up to mum at 6.30

2019: Mum and Mark are still in Ireland. Kiegan is at theirs looking after the cat – Prince Eric Catona (How embarrassing). I went over for the day and we decided on a BBQ and were not going to let the rain stop us. My Aquarian mind put the double line up with the bbq cover pegged to it and stayed perfectly dry whilst the food sizzled

#toddlers #parents #ManchesterUtd #Family #BBQ #weather #starsigns #childsplay #cleaning #cats #cooking #EricCatona #

June 17th – From Birthdays to Life’s Cruel Ways

1999: Same old routine this morning although I did grace mum with a small cuddle on the settee. Mummy picked me up at four from Edons and off we went to Agal’s party in Chelmsford. We had lots of yummy food and she had some wicked presents and lots of friends. I soaked everyone with a water pistol, opened one of Agal’s presents when no one was looking and blew out the candle on the cake. Well, it is my birthday, they just don’t realise. Mum didn’t seem very supportive of my theory. Agal didn’t seem to mind though – she was having a good time too. Mummy and I got home at eight and off to bed. It took me half an hour to fall asleep as I was busy planning my next birthday party.

2019:  Ah.  What fun we used to have with Abby. They moved to Ireland when I was 4 and we moved to Lincolnshire. Sadly we didn’t see Abby again as she died in 2005. Mum and Mark are off to see Karen and Mark and her siblings Kate and Finley in the next few weeks but money stops play for me. The last time I saw them was about 6 years ago when we went to the Abby Harding Memorial Foundation Ball in Tandragee and I also met up with John and Jacob from those 1999 years. For more information on theis wonderful foundation, supporting families of children with an acquired brain injury,  you can find the Abby Harding memorial Foundation on face book

If  you have suffered the loss of a child you can get support at https://www.lullabytrust.org.uk

Helpful books for children struggling with loss are:

Badgers Parting Gift (Mum and I read this when we lost Bomper)

Muddles, Puddles and Sunshine

#toddlers #birthdays #childhood #adulthood #parties #ireland #lincolnshire #bereavement #bereavementsupport #AbbyHardingMemorialFoundation #chelmsford #balls #reunions

 

May 2nd – Memorials of Life, Flights and Southend Airport

1999:  Up at seven, although had crawled into bed earlier with mum.  I looked closely to check it was her.  I gave her a big hug and kiss and settled back down to sleep with a smile.  We went down for milk and I told mum I wanted to wee.  What a surprise she had when she took my nappy off – it was completely dry! Well I did tell them last night that I didn’t want my nappy on, whatever happened to trust? Mum had a bit of a lie in and when she got up, I proudly showed her the mess in my room and how clever I am – I’d been working just like Pa!  Today we went with Nanny to go to the crematorium, where my mummy‘s Nanny is.  We stopped at the nursery to buy plants and then got back into the car.  A little way up the road something blew off the roof of Nan’s car -oh dear it was mum’s mobile.  We had to pull over whilst mum sprinted back up the road to retrieve it (that’s the slowest sprint I’ve ever seen).  We drove to the Crem, where mum planted her plant, and Nan put some silk roses in a vase – I did the watering of course.  I stayed dry all morning and used the toilet and mum and Nan were very proud.  We went to the Ann Boleyn pub for lunch – chits and fizz.  It was great as it was right next to Southend airport and I got my first real close up of planes taking off and flying right over us.  There were also buses, trains, helicopters, cars and bikes to look at.  I was in my element. We had lemon and pepper turkey and pasta for tea, but I dropped mine all over the floor.  Luckily Nan had some in reserve! 

2019:  How Southend Airport has changed and is causing uproar rather than my childhood excitement.  Have to say I still love planes (and basically anything with an engine) but think even I might not like to live next to Southend Runway. When we lived in Lincolnshire we were on the flight path to Coningsby and used to love all the planes – Tornado and then Eurofighter which were amazing but the special treats were when the Battle of Britain Memorial Flight and red Arrows would fly over.

#ditzy #humour #memorial #pottytraining #planes #coningsby #lincolnshire #southend #airport #toddlers #growinup #childhood #bygonetimes #adulthood

April 19th – Chronicallyliving_cd – Living with a Chronic Disease

1999: To mum’s at 5.30.  After 20 minutes I got up, took my nappy off and got back into bed!  We got up at 6.30 and I don’t know what’s got into mum, but she cooked us a fry up!  I’ve been a very good boy today and haven’t had a nappy on at all, although I did do a poo in my pants!  That was Edon’s report anyway.  When mum collected me, things changed.  When we got home the car seat was soaked.  Oops!  Mum wasn’t happy.  I played in the garden and had a go on my swing – learning to push and pull – it seemed like hard work to me, it’s far easier just to get someone to push you.  When I got off my wellies squelched – more wee – oh dear!  Mum cooked a lovely stir-fry for tea with wriggly worms (noodles).  I pretended to be a bird and ate the lot – even finishing off some of mum’s.

2019: Crohn’s is poo and I’ve decided to try and write a daily Instagram blog – Chronically_livingcd. Just thinking of my bio. Possibly something like this:

For years I was diagnosed with IBS and Monday morning tummy when mum had the control to take me to the docs. It wasn’t until November 2016, at the age of 19, that mum booked me a doctors appointment and told me I was going. She actually frog marched me there following days of diarrhoea and vomiting and the pungent smell that told her something was seriously wrong. The GP was amazing. She listened to my embarrassed talking about delicate matters and immediately knew it was IBD or Crohn’s. I did my poo test and markers were off the scale. By the time I was diagnosed the inflammation and ulceration was so severe that no amount of steroids or immunos could get it under control. But I did nearly die of sepsis – 3 days before Christmas. Luckily mum came home from work and knew (I didn’t mind her going into bossy nurse mode at that point – in fact I was too delirious to even know). So ensued 7 months of being unable to work, plans to travel to Australia cancelled, several hospital admissions and eventually a hemicolectomy in July 2018. Things had improved and I was able to do more but I ulcerated after just two months and struggling again now but considering the injections….

From IBS to Crohn’s, from immunosuppressants to sepsis, from ulceration to surgery, from more ulceration to injections. What a journey. Know the signs, get early diagnosis and treatment and look after yourself

#Chrohn’s #IBS #pottytraing #toddlers #adults #intsagram #australi #travel #hospital #surgery #pottytraining

April 18th – Cow Pats and Face Packs

1999:   We went to make toast this morning, but the first lot of bread was mouldy, so I fed it to the birds.  Then mum burnt the next lot of toast.  Eventually we had toast, bacon and ketchup.  Mum went up to have a bath, I went up to join her and she had all this green stuff on her face.  She did look funny!  Something to do with making her look beautiful – I don’t know if I should tell her that she just looks very odd.  We went to the farm this morning; I sat on the play tractor for 15 minutes before we could go anywhere else.  We went to feed the sheep and I laughed because their tongues tickled my hands.  I got a bit frightened later though, when the big sheep bleated, and mum had to carry me, which was just in time for me to get a birds eye view of a cow doing the biggest poo ever.  I don’t envy her mummy having to clean that mess up.  My mummy doesn’t know how lucky she is!  We went to see the pigs and mum felt guilty about our bacon and toast this morning.  I don’t know why because they stink!  We spent time in the ball pit and soft play area and when we came out mum tried to get me to put my coat on.  Eventually she told me that I had to put it on as it had my sticker on for the farm.  Is she really that daft?  Look all you have to do is peel it off and stick it on my jumper!  What’s so funny about that then?  Tooth count up tonight – 10 top and bottom

2019:  Well trust me Crohn’s makes you poo just like that bloomin cow! I’m sure I love my bacon so much de to those smelly squealing pigs. I used to try and hold my nose and cover my ears when we went through the pigs bit of the farm. Pretty tricky with only two hands so I learnt to hold my breath. And as or face backs – Zof and I love a good charcoal one!