Got a lie in this morning. A real treat in this house.
Kids go big on presents on FD - we do the same for Mum in March.
A phone a watch and a new camera (the old one was demic) hand-made coasters with the girls' pics in them and a Super Dad tea mug. A pile of cards from school, bought ones and hand made ones too (we do craft in a big way too).
Spent the day changing the bedrooms round. We're going in the smaller back room and giving up the bigger room to the girls and baby Cerys (she's ready to sleep without Mummy and Daddy - not sure if we are tho!)
As the girls were in school, Ashley (after an eye test - he needs glasses - no surprise there) was in Nursery and Cerys was being coddled by one of her favourite aunties, Gill and I had a pub lunch.
It was nice to just sit and chat and have a laugh.
This afternoon was a massive clothes sort and binning and this evening we just did Family Time .
(Just read this through. We do pack a lot in don't we? It would be nice to think that busy days are a one-off but they're not. Ashley's condition and being a family of 4 kids means every day is a tad hectic. Maybe we should start planning ! we could fit even more in!! (Gill's smiling))
Ashley has an underdeveloped centre line of his brain which includes his optical nerves. He's epileptic, registered partially sighted, has eating problems, a sleeping disorder and takes 3 different drugs to keep him stable.
Today an old friend came to pick up a carpet for my In-laws. His son has similar problems with Cerebral Palsy. He's 18 months younger than Ashley so for the first time we could help someone following a similar path to ours.
He'd had the same frustrations as us when dealing with hospital "experts". One doctor, on hearing that part of his brain was under developed asked if they were going to operate! He feels the same loss of ownership and control as we did when Ash was younger.He too is exasperated when he is asked by inexperienced registrars "right then, what's up with your son?"
What we could do is tell him that he can play a part in his son's care by being an expert on him, not his condition. Gill now tells the doctors which blood tests need to be done. We have changed Specialists who were idiots and sat in on Group Disciplinary meetings and held our own with the pro's.
He was glad to find we shared so much and will hopefully see a better future with the experts who dominate our lives.
(Anybody reading these things?)
I feel extremely fortunate to be where I am now and 'blessed' by whatever bigger consciousness plays with our fate.
I'm deeply in love with my mate.
I spent this evening staring deeply into the eyes of my 3 month old daughter and being rewarded with the most beautiful smiles.
So, how are you?
Part of our school's Induction is a one-off meeting with all parents of new Nursery kids and all the staff. In reality this means half a dozen sets of parents some of whom have done this all before (in our case 3 times!).
The cake was nice and Tony (The Head) was gushing with praise for the Nursery staff and they for him. He seemed very nervous which is unlike him and he used prompt cards (can't remember seeing them before)
I came away with the impression that this will be the first of oh so many meetings to discuss and review Ashley.
The non-teaching staff were REALLY interested in all his little idiosyncrasies, especially when they heard he was epileptic. We agreed to do a crib sheet for them and to come in and spend time getting them up to speed.
The school has its own Website if you'd like to have a peek.
Pinched from Bobble's blog:
1. What were you doing ten years ago?
Summer 1998 we'd been married for six months and were trying for a baby BIG style. We both worked at a Dogs' Home in North Manchester, had money, each had a car and spent evenings playing Lara Croft on a Playstation. Social life was great and the house was free of small ankle-biting distractions.
2. List five seven eight
(non-work) things on my to-do list for today.
1. Take a boxed pram to the Post Office (sold on eBay)
2. Bath Cerys (16weeks)
3. Repaint Ashley’s (2) blackout (he’s waking up earlier again)
4. Have a chat with Heather(9) about Brownie Camp (think she’s worried)
5. Give Jo (7) some Daddy time.
6. Give Gill some “GET ME OUT OF THIS F***ING HOUSE” time.
7. Rub some Deep Heat into my gammy knee.
8. Chat to Gill about dates for Ashley’s Nursery ‘taster’ sessions and the fitting session he had for his hoist sling today
3. Food I enjoy:
Yes.
Oh, sorry. That was a question not a statement?
Okay.
Cake. Anyone who knows me knows this is top of the list. Fresh fruit (with hardly any exceptions – except just those strange spikey things with all the seeds inside) LOVE apricot and peaches and bananas and …..
4. Things I would do if I were a billionaire:
Not work. Open a hospital wing. Buy people’s houses for them and pay off their debts. Buy and re-staff business that have peed me off with their grotty customer service. Spend a large amount of time in places I’ve always fancied going to.
5. Places I have lived (not in order):
Bury near Manchester, Melbourne, Bury again, Coventry, Bury again again
Number of House I’ve lived in: 19
5 were digs at college, 5 were Oz addresses when parents moved around as Salvation Army Captains, the rest are down to a nomadic nature I’ve inherited from my Mum.
6. Jobs I have had (not in order):
Teacher; Charity Coordinator, Service Manager, Operations Coordinator, Asda monkey, Event Coordinator, Colleague Rep., Lost Dog “Reuniter”, paperboy, Office junior (tea sir? Or shall I shine your boots sir?)
Ooh, that was fun.
Today my girls did a sponsored Run/Jog?Walk.
My son went to Nursery in a variety of Orange/Red/Yellow clothes which we'd sponsored him to wear. And his hair was dyed orange too. (he looked cute)
Tonight's a meeting after Brownies about the Camp in late June.
Work was the normal round of reworking the Night Crew's Cages, mediating between colleagues, answering idiot questions from numb-in-the-head customers.
But today was flavoured with the Celebration Lunch. This 'auspicious' occasion is supposed to make big the efforts of colleagues who go that bit further to help customers. In reality it's poorly attended and nominations are only given to a small crowd of the same faces. Prizes are miserly - £2 canteen tokens, extra breaks (worth about ooh £2 at our hourly rate) and the like. Real efforts are largely ignored - one colleague took an elderly lady home who fell ill in the store, another cleaned every price strip in the store to help prepare for a Director's visit. Winners are usually Security colleagues who have stopped thieves and Checkout Operators who have been pleasant to customers - yeah that's what they're paid to do, isn't it? I got small box of maltesers once - I left it on the table for the colleagues.
True appreciation is immediate and sincere. Look'em in the eye and say, "thank you for your efforts. It IS appreciated." Bunch of flowers (3 or 4 quids worth, box of chocs, "Bugger of home half an hour early, I'll clock you out"
It's not Rocket Science.
Not sure about blogging any more.
As an experiment I started blogging identical entries on 4 sites and watched the replies. To help encourage replies I posted comments on several different members blogs on each site. Not only did all but Vox stay silent but even my comments got no replies.
When I started on Platform 26 the community spirit encouraged you to come back every day. That died a death when 26 started buggering about with platforms and servers and we all started to get very strange comments.
Is this a dying art that's had its day?
I don't expect any comments by the way..............
The new hours at work are a bit tough. Getting up at 4:45 for a 6am start is a bit of a bind. But I've done a lot to sort out the wine "cellar" and have started to track the inventory.
Also, Ashley's been through the worst of his Chicken Pox but is now thankfully just extremely scabby. His good nature always astonishes us as most would be miserable at all the stuff he has gone through.
Gill's Mum is better - well it turned out to be "just" a lung infection rather than a collapsed lung. She seems well enough - still smoking though.
Just had a lovely weekend off where the kids have played out a lot and we've got the house sorted out again.
The baby is a real smiler. I'll post a pic when I can figure out how to transfer them from the camera.
And tomorrow it all starts again.
Well, it's all go here!
My day off (of course) and Ashley went to Nursery this morning all smiles. An hour later we got a call to say he has Chicken Pox. So he's home for a week. The baby's ok (she has her Mum's immunity for 6 months or so) and we've all had it.
Ten minutes ago we got a call to say Gill's Mum has been rushed to hospital for chest rays - suspected collapsed lung.
So I'm making tea tonite.
New rota starts tomorrow morning at 6. Wish me luck!
Ashley has Developmental Delay which means he is basically like a 38 pound one year old.
Because of this he has been Statemented which means when he starts School Nursery in September he will have a Carer and equipment to help him thrive in a mainstream school.
Today we met with the Head of Infants, his carer-to-be, our Portage worker and the town’s Special Needs Coordinator to start the planning for his induction later this term and his first few weeks in September.
I won’t bore you with the details but I will say that although the meeting was very productive (the Head of Infants is a remarkable woman!) it was also very difficult.
As parents we have always been fierce in protecting Ashley from unnecessary treatment, rough handling, long days in hospital etc. Today felt a little like we were delegating some of that responsibility to these people. As such we have to be sure that everything is up to scratch. So it was difficult.
However, one day in the long distant future Ashley will hopefully be independent and we have to work towards that. September will be a step on that path.
where have you gone derby dave ? hows ashley coming along ? read more
on Quiet weekend