Wordpress

Leaving you again, this time for Wordpress.

Not one comment in ages despite me leaving comments on other blogs.

Good bye!

Downs and Ups

Tuesday's brain scan was hard. Ashley took a while to recover from the General Anaesthetic and for a few days he was so tired. We tried to get him back to school and he stayed for half a day then a full day.

His resilience is great and his smiles soon come back. This makes it all the harder to put him through these things even though we know it is for his good. They need to watch his progress. They need to watch for things getting worse. But that doesn't stop us feeling guilty. They took six shots at getting a cannula in which left him looking bruised and sore. He had been due for further blood tests on Thursday but we cancelled them to give him time to heal.

This is one aspect of being the parent of a kid with a disability. "Elective" treatment is all well and good when you decide to have it done to you. But we have to make this decision for him. As his advocates we have to grit our teeth and say "yes" to him being manhandled, bruised, drugged, tested,. And yes, we do say "No" when the cumulative effect of their intrusion just gets too much.

There's a weird sense that you start to get of the "medical entity" which has so many faces. Although the individuals you deal with have their own characters and existence (families, careers etc), together they form a beast who would like to own your little one. You have to stand up and face this Thing and say NO! when the moment is right. We felt this more when he was tiny and we had Consultants and Registrars calling him in every week. Some hadn't even prepared for the interview - they seemed to thing that their assumed ownership of this poorly child would allow them to "wing it".......... I disagreed. One doctor probably still remembers the conversation we had when I told him precisely what I thought of him.

Work has been especially hard lately as we've fought to reduce stock levels, deal with high illness levels and new managers. Despite all this and my feeling exhausted and a bad shoulder injury not healing, despite all this we are coming out the other side.

On Sunday I supported a colleague in a disciplinary which was very traumatic. I came back feeling like I'd been wrung out. Not the best preparation for Tuesday's scan.

The back end of the week was interesting. I was told a Mystery Shopper had given me 100% which felt good and that my team had been nominated for a group prize for the reduction in stock.

Then yesterday Security called me in to show me cctv footage of a shoplifter new to the store. A distinctive looking woman she took whiskey and champagne and had bagged it, only paying for a loaf of bread. I said I'd keep an eye out for her. That afternoon I was tidying the whiskey section when a voice beside me asked for my opinion on two of the whiskey lines. Yup, it was her. I gave her a polite answer then went for security ... who weren't there. I looked for managers .... who weren't there. I thought I may as well challenge her myself at the door and when I got to the front I saw a manager. We challenged her together and got all the stock back before she ran off.

I was jubilant and then got on with the job.

Today I was summoned to the Celebration Lunch we have every 4 weeks. I knew about the Mystery Shopper and expected the usual £2 luncheon voucher. ... Nope. I got a "Gold" thank you card with a Diamond under the scratch-off panel. Puzzled I went on the company Intranet as instructed on the card and was really glad I did. Diamond level awards are one of the following:

- a paraglider flight

- a day at the races for two

- £50 off a day out at a Theme Park

- design your own perfume

- money off anything from lastminute.com who deal with short breaks, experiences, concerts, theatre etc

Not a bad end to the week eh?

p.s Jo got a Brownie Badge for Hostessing and Heather earned her first Bronze Merit at High School. So proud of my girlies.

an MRI at MRI

That's a Magnetic Resonance Image (brain scan) at Manchester Royal Infirmary. Ashley's due for one tomorrow.

We have two worries:

- first, to have the scan, he has to be motionless. You and I could probably do this but a 5 year old special needs kids has no chance. Up til now he has been given Chloral Hydrate but now he's bigger he has to go under a General Anaesthetic. There are dangers involved and although they've assured us that he will only go under for long enough for the scan, it still worries us. Last year I stopped breathing on the way out of theatre after a throat op. I'm sure he'll be okay but ........

- secondly although he needs the scan (seizures are more frequent and it's been a couple of years since the last one) we still wonder what they'll find. He has a ventriculomegaly (larger than normal fluid channels in the middle of his brain), and arachnoid cyst (bubble of fluid in the coating of his brain) and agenesis of the corpus callosum (the bridge between the two halves of his brain is poorly formed). So we know what they're looking for but it worries us to know any of these things could worsen. There's talk of a shunt to ease a possible build up of pressure from his brain fluid (he's started to have headaches).

Not much sleep tonight then...........

Lament for a sister

Here's something.

37 years ago my sister would have been born.

But 37 years ago in April we were in a car accident. The car was packed. Me and my two brothers were in the back of the estate my Mum drove. A family of four were in the back seat and Dad sat beside mum. As we turned to cross a road to get into a car park another car hit the front wing and made the car spin fast. Dad flew out of the window, landing on his head on a grid breaking his head and neck. His inner ears drained and miraculously the toddler in the back seat followed him out and landed on his shoulders - which saved her life, but broke his back. However, he wasn't finished. He stood up, head bleeding profusely, and demanded to see us boys. It took several men to get him to lie on the ambulance stretcher. The next day he was immobile. Couldn't speak - they'd put a tracheotomy in, stitched his head back up and loaded him with drugs.

It took a year to rehabilitate him. Even then he was a gaunt shadow of himself. Barely able to walk. Learning to talk and eat with half a throat. No balance making him seem drunk. Mashed brain struggling to make connections again. Seizures taking over his body during the night.

It's a testament to what a mighty man he was that after this incredible setback at 46 he's still alive today at 84.

The only other injury was to my Mum who was wearing a seatbelt. It cut into her so suddenly and sharply that she lost the baby she was carrying. The baby she didn't know about. Her 'cycle' wasn't regular at that time and she'd thought nothing of it.

But about now 37 years ago my sister would have been born.

I sometimes wonder what she would have been like.

I know I look for her in women of a similar age.

How would the three of us grown differently having a little sister?

She could have been a Grandma by now (I'd hope not).

You can't miss what you've never had.

But I do wonder......

Thought I'd share.

Hope your day's been good.

Life goes on

Early start this morning.

Took Jo’s Aztec Football pitch over to school with her for preschool club. The spikes are for the losing side’s heads she tells me.

Jumped in the car and took Ashley to Manchester Royal Infirmary for consult with the Endocrine peeps. No blood tests but further scans ordered.

Back to retrieve toddler daughter from a friend. Fab morning in town apparently.

Afternoon with my Mum putting up a wall mounted TV. She’d bought the wrong bracket and managed to pour a cup of hot tea all over me. Dad (84 today) had a skull cap on. He’d gone into the garden yesterday to feed the fish and slipped and split his head open. Mum got back to find the place full of police and ambulance paramedics fixing him up.

Home for a bath – my half an hour of peace.

Quick tea then all kids dressed for a spooks disco – pics below – younger two conked out so brought them home and left Gill and the girls boogying with our mates. The lady holding Ashley is a good friend and one of his Support Team.

Hope your day was good.

Birds n Bees

We’ve always been open about Sex Ed with Heather and Jo. We agreed when H was small that we’d answer their questions as they came and not lecture them or burden them with detail. My Mum sat me down and gave me the full graphic description. It took over half an hour and just served to confuse me.

School has just launched into the biology of the whole thing with line drawings and cartoon couplings.

She brought a worksheet home this evening which she got absolutely and very comically wrong.

Don’t get me wrong. She’s bright enough. She just doesn’t learn things like an arrow whizzing to its target. It’s more like a feather wafting in a zephyr.

Anyway, when we reordered the whole thing so that sperm doesn’t originate in the ovary (where it’s nice and warm) and doesn’t go on a swim to look for eggs in the vagina, she sat looking thoughtfully. Then she said, “so have you and Mummy done it?”. and then squealed “FOUR TIMES!” at my answer. For an embarrassed moment I almost said “we’ve done it morethan 4 times” but managed to suppress that one.

Homework done and book closed we went back to watching Modern Family (the earthquake one). Thank goodness I’d got through that one fairly unscathed.

She then turned to me and asked “How does it get in there then?”

Mid Life Crisis?

I’m 48 in a fortnight.

It’s a scary thought.

At 48 my Dad had served in the army on “mop-up” operations around the Med after the war, been married twice, emigrated with us in tow to Oz and been in a near fatal accident which has left him deaf and with some paralysis.

He still has his sense of humour though.

At 48 (nearly) I’ve been a teacher, charity worker, administrator, operations/service manager, and now do some hours in a supermarket. I’ve been married for 13 years this November and have fathered 4 children (that I know of lol).

A few weeks ago my younger brother had a heart attack and is now recovering slowly. This has reminded me of my own mortality. Something which has chilled me to the bone, especially with a young family to care for.

I know I’m ageing better than my peers, judging by their facebook profile pictures anyway. I give blood a few times a year and have never been refused in 30 years. Last year I had a lump removed from my throat which I’ve been told was a warty growth and not “sinister”.

Today Gill took me to a tattoo parlour to choose my birthday present. I’ve chosen to have portraits of my kids across my shoulders and back. I need to add Cerys to the list of scrolls on my left upper arm and am eyeing up a St George killing the dragon “born British but English by the Grace of God”.

I know it’s not a big motor bike as is the norm for MLC sufferers. But it is a big step.

I don’t wander around with my shirt off so Gill and the girls are the only ones who’ll see them.

So is it a mid life crisis?

Don’t know.

moved !

moved to WordPress at http://dderbydave.wordpress.com/ see you there!