Sunday, 20 June 2010

Party on down.

Went to a party last night at the Riding School that Holly goes to. It was a cold night so was really glad they had the fire pit going and was able to get a wee heat at the fire.

A lot of people were camping so there were tents and caravans everywhere. The riding school is based on a working farm so they have quite a bit of land and lots sheds etc. It was in one of these sheds that the musicians had set up so there was some great entertainment. Holly got up to sing some of her songs from when she was Nancy in Oliver and she dragged me up to sing along with her. She sang without music and I was a very proud mum I can tell you. She has such a powerful voice, it's amazing.

The atmosphere was magic and everyone was having an absolute ball. We were dancing and singing along with the band and by the end of the night my voice was hoarse from singing! I was even chatted up by a guy who was a teacher at Holly's school, much to her disgust!

By 12.30am, Holly and I were flagging so we tracked down friends we were supposed to be sharing a taxi with and they had managed to find someone to give us a lift home, which we were very grateful for. All in all it was a brilliant night and we had a great time.

Back home, my dad and I had a chat before he headed off on his bike. At 74, he is one fit guy and cycles everywhere. Then I hooked up Jack's feed and headed to bed where I just couldn't seem to get warm so had to put on more layers to get heated up. I finally fell asleep about 3am, tired but happy,

Saturday, 19 June 2010


Summer, don't you love it? I do but I hate it too as it's the time of year when every one is talking about their holiday plans and counting down the days to departure.

I like hearing about peoples holidays but I can't help but feel totally jealous that they are able to just take off without a care in the world. This is when reality kicks in and I am forced to face facts that my life is anything but normal!

This year I wanted to take Jack and Holly to Disneyland Paris. Holly and I were getting quite excited about it cos we just love it there but then Jack became very ill in October with Aspiration Pneumonia. It was touch and go for a while but he pulled through. Then in March he had to be hospitalised again for Aspiration Pneumonia and for the first time ever, spent his birthday in HDU. (A more detailed blog on that time later I think!)

I think I was in shock as getting pneumonia twice in 6 months is bad, really bad. On the drive home from hospital I broke the news to Holly that I didn't think it was a good idea to go to Paris now as I didn't think I could cope with Jack being ill in a foreign country and them not being able to understand Jack's genetic condition not to mention the language barrier!

So although Jack seems stable at the moment, it is an endless fight to keep his chest clear. Jack also suffers with refractory epilepsy and has often had to be hospitalised for that too.

We desperately need a holiday, just being in a different environment for a change. So now I am trawling the net for something in the uk, just a cottage somewhere but that has disabled facilities ie hoists, disabled shower etc. It's like looking for a needle in a haystack, honestly!

Holly is very good and totally understands but she is disappointed that we are not going to Disneyland Paris this year. I feel gutted that we are not going too but it would be crazy to risk it right now.

So forgive me for feeling jealous my friends when you are all so so excited about your holidays but I do hope you have a lovely time.

Thursday, 17 June 2010

Carers Week

Carers Week 14th-18th June

I never understand why they have weeks dedicated to different things. Who decides these things? And why? It's not like it changes anything for the people involved. Now if you told me that Carers Week meant that you were given a week away to be pampered and spoilt for all your hard, lonely, poorly paid work then hey I am up for that! ONLY, of course, if they then arranged for the person you cared for to be looked after for that week too while you were away.

I have been a carer for 12 years now and this is the first time I have been to one of these events. Ours was held in the Town Hall. I went with a friend whose child suffers from Autism. We both felt like a fish out of water really as we were about the only people there who a)was young (ok young ish!) and b)looked after a child.

Everyone was very friendly and a very healthy lunch was laid on for us. An older man, named Hugh came and chatted to us. His wife has Dementia and he said he found it really hard going at times but that he had quite a bit of support via the various Carers Support Groups and he was on quite a few carers forums as well.

I take my hat off to him for being so involved in forums etc as it is a fairly big commitment on top of the 24/7 job he already has looking after his wife!

After lunch, we were treated to a performance by the Out of Darkness Theatre Company. It basically was a distraught carer who was being introduced to representatives from the relevant agencies who could help her. The people from the agencies were not actors but they bravely got up and explained what they do to this actor. Unfortunately some people couldn't hear and were getting a bit stroppy which added greatly to the entertainment!!!

At the end of the performance the audience could question the relevant agency reps and oh boy it got quite heated at times!! Thank god for the lady at the front who was fielding the questions otherwise it would have got way outta hand! lol I was a bit naughty and put my pennies worth in when they were talking about carers assessments and wound up the row of people in front of me when I said "that it was not worth the paper it's written on!" Well that is my experience anyway.

The question time was quickly drawn to a close before all hell broke loose which was a shame as it was just getting interesting!

We were then free to wander round various stalls which were dotted around the hall and we ended the day with a spot of Healing. The lady who was working on me told me that my body is exhausted and when could I come and see them on a Tuesday night? I wish! It obviously had an affect as I had the best sleep in a long time and you can't complain about that.

All in all it was an ok afternoon. Did it make me feel less burdened with my responsibilities? No but it certainly entertained me, just maybe not it the way it should have! lol

Tuesday, 15 June 2010

Karma is a beautiful thing.

On the wine tonight, felt the need to partake of a few glasses.

My ex husband gets married next week. This is his second attempt lol. Last date was the 17th April and all was going to plan until first he had technical problems with the plane from Angola to London. Finally he arrived back in Aberdeen bout 9pm and got home to Elgin late. Was up again at the crack of dawn on the 15th April, with his parents to fly to Azerbijan where his bride to be was waiting with baited breath but they didn't bank on a volcano erupting in Iceland!!!

First I knew about it was when I was putting Jack on his bus to school and I passed the living room, the tv was on and all I caught was that all airports were at a standstill.

Well you can imagine that I was imagining all sorts....terrorist attacks the works.

When I got back to the tv I'd missed that item of news so I flicked to sky news and there it was on nearly every channel.

I couldn't breathe and I could hear the laughter bubbling up from the soles of my feet and before I knew it I was collapsed on the sofa laughing my ass off! Every time I tried to stop it would start again and I found I couldn't stop laughing enough to text all my family and friends with this hilarious turn of events. There were tears running down my face and I was snickering and snorting, I was a right mess but oh god I could not get a grip!

Eventually I gave up and plonked myself on the sofa and proceeded to laugh hysterically every time they moved the time for the first available take off from any uk airport. I managed to calm myself enough to call the ex's parents to ask if they were affected by this!!!! Oscar performance or what! Note: I was sorry for them and their daughter, just not their son!

Anyway, I finally dragged myself away from the tv to get dressed before the kids came home and when Holly arrived, she took one look at me and we both creased up laughing! and it continued like that the rest of the day and into the weekend. I can honestly say my ex hasn't made me laugh this much in such a long time! If only he knew.


Holly is in the local paper re the play. She will be over the moon! As is her very happy mum. Now I am trying really hard to resist the urge to run around all the newsagents in Elgin buying up all the copies of the paper like a crazy lady. Ah fuck it, too late, it's done!

The Shop

The play that Holly was in was called The Shop. It was a short drama about a teenage boy who becomes hooked on heroin. God was it hard hitting or what. At times it brought me to tears and I found it hard to watch! What made it all the more real was that a parent gave a talk before hand about her son's addiction to Heroin and the effect on her family. She was so brave to get up there in front of all these strangers!

Anyway, Holly, Lewis and Shona were superb playing 3 of the main characters in the story. It was well put together considering they only had 4 days rehearsal and that by the time we watched it, it was their third show that day. Well impressed with the Out of Darkness Theatre Co and a very very proud mum. You rocked Holly!

Monday, 14 June 2010

A rare lie in

Had a really good sleep. Woke at 7 and got Holly up as she had to be at the town hall for 8.45. She is in a play today called The Shop, about a teenagers decent into the murky world of drugs. Lovely! lol

Went back to sleep til 11.30 then lept into action and took the two dogs (one labradoodle and one cross between a golden doodle and a labradoodle......I know the mind boggles!) for a long walk in the woods.

Then straight to respite to pick up all Jack's stuff and get an update on how he was last night. Home now, unpacked all Jack's stuff, quick phone call to Granny Mac to see if she will babysit Jack tonight while I go to see Holly in her play.

Granny Mac is 71 but is the only family member I have who can look after Jack and give meds, deal with seizures etc etc and I really appreciate her help but hate asking as it is always the same person I ask! She is my ex's mum.

My own mum died 4 years ago this month and she was an amazing woman. My dad helps out but not sure how to give meds, feeds etc so it's usually only for an hour or two in between feeds and meds. I really appreciate his help too.

Dogs are now lying out cold at my feet and I am having a late lunch before Jack gets home from school. The house is like a bomb hit it but ce la vie :-)

Sunday, 13 June 2010


This is supposed to be a weekend off for me. Jack goes into overnight respite for a weekend once a month and by the time that time comes around I am usually exhausted! Got a phone call early this week saying they are short staffed and have no cover for Saturday night so I had to take Jack home on sat. Luckily they managed to get cover til 8.45pm but I still lost out on a night's break.
Same thing happened last month, it is so unfair as you then can't plan anything in case they cut your weekend short again.

Caring is not like a normal job, your working hours consist of 24 hour days, 52 weeks a year and days off are rare and can be cancelled at short notice and you don't get them back at a later date!

Getting a babysitter is a nightmare as they have to specialized and able to give cpr, rescue meds for seizures, be familiar with PEG feeding, see to all personal care and have training in VNS Magnetic therapy! Think I am looking for superman/women don't you? No just another me! lol

That weekend is so precious to me as it is the only time that my life is "normal". Any other time my life revolves around Jack's disability and trying to be a good parent to Holly at the same time.

Today (Sunday) I am just sitting doing nothing as I am so tired I don't wanna move lol

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