..........and A partridge in a pear tree!!!

............... I know - you're all wondering why i'm on to the Christmas songs in august!!
No - not been at the Christmas bottle of sherry - yet. (but i may well hit it soon!!)

It was Matthew's Dad's 80th Birthday last week and we had a party at one of the sister's houses.
Matthew's dad has 6 children, 17 grandchildren and 3 great grandchildren (hence the adding  of said bird and said tree - i doubt anyone would have noticed)

So the age range was from 80 down to 8 weeks and 4 days old!!!!
The 8 week and 4 day old is the reason that i haven't blogged for ages - He is the newest addition to the family and my grandson!!!
In short, if he was chocolate you'd eat him

A pic of Christopher with Grandad at about 7 hours old.
Told you he was cute.

But anyway - Friday night was his big debut meeting family members on his paternal side. (the maternal or distaff sides party is in a few weeks when the Australians arrive!!!)

So off we went - convoy of 2 cars, 6 grown ups and a baby.

This child had a ball - we hardly saw him - apart from when he needed feeding and it was nice (mostly!!) to meet up with every one.

Come on - we've all got that one relative we don't want to see. But we behaved!!

For me, it's always rather bittersweet when we get together with Matthew's family. One of the cousins is 3 months older that Peter and has a degree in English Lit and Slavonic Studies. (yeah, right, cos that's the kinda degree that you're REALLY gonna get a job working as in Glasgow. Just crying out for teachers of slavonic wotsits!!!)

He's also now doing a PhD - something eastern European. I don't ask questions that i'm not really bothered about the reply to!!!

(i'm such and interested in how you're all doing Auntie - NOT!!! I will ask a couple of them, but mostly - nah!!! )

But it often brings home to me that Peter's development is well and truly delayed, he's not going to catch up and well, this is almost as good as it gets.

All this was on top of an incident that happened at the lunch club Peter does some work at. The incident (not going into details just now) just showed how vulnerable Peter is and how he can't always tell you what has happened. 
I kind of did know, but things have been ticking over well, but it was a kick up the bahookie even for the workers at the lunch club as well and has made us all think about how we approach things.

In times gone by, i would have cried and not really wanted to be there. 
But Peter chatted to most of Matthew's sisters, almost got me to slap the  one who is most patronizing and two of his cousins want to come to Disney with us in January!!!

Poor Claire - when we were talking about holidays, she was like " oh, i've never been on a holiday like your ones!"

(just shows that i maybe did something right. BUT - if i ever win big on the lottery, i may ask her mum if she and Anna want to come to Disney in Paris with us. These 2 cousins i love and they chat away to Peter!!)

Over the years, i have managed to be better about dealing with these family get togethers .
I try not to get upset and my thickened skin and black sense of humour usually get me through.

(oh, and the fact that we don't often meet up and i can escape back to our little world. That helps!!!)

But it was nice to see how good Christopher and Peter were in their  own ways.

Mind you, mother has one glass of prosecco and was knackered after.

Just not used to friday nights out anymore.!!!!!

The madness that is my life

...................... and how I survive it!!!

Don't blame me for the title of the blog - I was totally stumped. Knew what I wanted to blog about, but just not what to call it!!!!

Most of you know i'm mad.
I will gladly proclaim my madness in all it's various forms, but for those of you who have read my bogging efforts before, you know there is a reason to my madness.

Mainly my madness (in a mostly nice way, but not always!!) is due to Peter.

So, this week, being Chromosome Disorder Awareness Week, I thought i'd tell you a little bit more about Peter, his chromosomes and the people who share this part of our lives.

We knew from Day 2 that Peter has problems. Well, I say we, I did after spending the evening before crying and  listening to fireworks going off in George Square to celebrate the start of the Year of Culture.

Next day I did say to the midwifes and Matthew, but got the " he's a boy" and "he was a couple of weeks early" "don't worry".

(11 years later, I did go over his notes and found that one of the doctors had concerns, but didn't pass them on. Hell, she didn't even bother to sign the notes, so why on earth would she say anything?!?!?!)

So for the next 6 moths I worried, wondered and tried to get on with life.
We had a follow up appointment at the clinic in June for a couple of minor things, where it was decided to take bloods.
Nobody really explained WHY, just that the bloods should get done.

Fairly quickly we got a  letter asking us to go back to the clinic. I had explained to the doctor that we hadn't been given an appointment to go back to the clinic till October. She looked rather puzzled and worried (which made me worry even more)

Anyway, to the clinic we went.

Most of that day after was a blur. We had been told that Peter had  Prader Willi Syndrome (a few weeks later we found out that was wrong).
We were referred to the Genetics clinic at the children's hospital ando told to just "wait for that".

Loads of things happened in those few weeks.
I found that my GP had been frantically asking the Trainees in the Practice what the knew about PWS.
I found that the Registrar had been using my son for a teaching practice - after the Librarian at the hospital let it slip to a friend (who is a nurse) who went to find out info for us.
We found out that Peter didn't have PWS, but certainly DID have something genetic going on.

And I found a very lovely woman called Edna Knight.
As I type I still remember the tears (because as I type I can barely see the keyboard for them and I'm, trying not to let Peter see me cry as he happily sings along to a don on the laptop)

Edna and some other families got together a few years before and the group they formed went on to become Unique - a support group for families affected by rare chromosome disorders.

I don't remember a lot about that phone conversation - 25 years on, all I do remember Edna telling me was that it wasn't my fault. Whatever was wrong with Peter had happened before I most likely knew I was pregnant. She asked me to write  a little bit about us and Peter and send it for the news letter.

If you really want in depth about life over the next 25 years, look through my other posts, but along the way, we have found loads out about Rare Chromosome Disorders.
Most of them just have a string of letters and numbers.
That's the whole point - so rare, there are not enough people to give them a name!!!

There are lots of differences even between the people who seem to have similar genetic make up. Seizures, delayed development, deafness, autistic traits, eyesight issues...........................
But some people are less affected than others - Peter has global delayed development, am autistic spectrum disorder, his language was delayed, he had hypotonia, dysmorphic features, but on the whole is fairly healthy, and thankfully no great dramas health wise. Apart from having weird reactions to pain - you think something is going to really hurt and hardly flinches (or at most gives a grimace) In fact, you KNOW it's sore, but he doesn't react.

Then someone brushes by him and he's almost shouting at them to STOP IT!!!

I know weird!!!

(but heck , with a mother like me............................. Well, least said about that the better!!!)

We have spent time at Family weekends with Unique families and often, it's not so much the actual disorders you end up talking about - it's the "how did you deal with the first day of school" or "how did you deal with.................?????"

And you laugh because there is the blackest senses of humour out!!!

The comments like "oh, they've fallen - ach, they're still breathing, they're ok!!"

Or like the time Lou and Paul met up with twins - younger than them. Next thing I knew, the dad was over asking me "the girl with the long red hair and her brother - are they yours?" My reaction was "whatever they've done, i'm sorry - i'll go and sort it out"

The dad laughed and said "no - I just wanted to say they are wonderful. My daughter took your daughters hand and they went for a walk. My son got a bit worried, so your son came over and asked if they should go and annoy the girls and chase after them. It was nice to watch and funny at the same time."

That was another "lets get the tears going and cry moment".

That's the whole point of Unique. We start talking about chromosomes and then find we're talking about things that we never thought about.

It's the sharing and support.
The first conference I went to with my friend Fiona - my mum died on the Saturday morning. I was so glad that she was with me, because I would never have managed to get myself home.
But the Unique machine rolled into action, took Fiona with them to reception to make the needed phone calls and someone was with me making sure I was ok.

http://www.rarechromo.org/html/home.asp 

Click on the line - it'll take you to our website where you can learn more about Chromososmes.

Me - i'm going off to tweet, retweet and facebook  about the awareness week.

So retweet and share for me.


Thankyou for reading.
And you're all welcome to come and join my mad crazy life!!!

Saturday afternoons

Over the years, my satyrdays have been filled with various things.
Going food shopping (better to get it delivered- less stress!!)
Spending time at my mum and dad's when they werea alive.

Music school was saturday mornings fir severalyears. Good fun and i did get to know other parents. Highly recommend it as a free version of therapy - all life started, ended and was discussed!!!!

But the past few years, saturday afternoons have been spent taking Peter to art class at Projectability. 
Over the years, his work has been varied and good.
Loves doing Disney pics - mainly from or photos from visits to  disney.
Or pics of the cats!!!!!

And he has added thursday afternoons to his busy life - more art.

He has done some clay models, more painting, one a self portrait and has had some work exhibited and even a painting sold!!!

Ther are about ten people who go to the class on a saturday - most of them have learning disabilities.

Mostly it is quiet, they are working hard, then you get a flurry of noise, or a laugh and you know everyone is enjoying it.

And i just sit in the room with my kindle and enjoy.

Mind you, there are times i almost have to drag Peter away!!!
But i willonly get wprried if he brings his sleeping bags and food and says he is going to stay!!!!

He packs his lunch in a Sunblest bag............................

...................The children call him bogey.

Now some of you will know EXACTLY what i'm on about, others will be scratching their heads and others will be asking "what the HECK is a Sunblest bag?????"

Well, for the uninitiated, the words are from the song Dignity, by Deacon Blue.

And I was at their concert last night here in Glasgow!!!!!

Louise, Peter and Paul bought me 2 tickets to see them for my birthday!
Lou lived in the vague hope that  may take her, but instead, I took my friend Pauline.
And boy did we have a BLAST!!!!!!

We were up on high in the Armadillo, but even at that, our seats were good - looking down on to the centre of the stage, Watching Ricky Ross strut his stuff, Dougie Vipond give it welly on the drums and the lovely Lorraine McIntosh warble away!!!!

Deacon Blue have been around for the same length of time as Matthew and I have been married - which wasn't just last month!!!
They are SOOOOO much better than all these boy/girlie bands who lip synch and mime along to the songs.

This is full in yer face singing and music that makes you want to get up and clap, dance and cheer the night away!!!!!

Pauline and I reckoned they were looking good and hadn't really aged.

Then we realised that we are of a similar age - and i'm not sure that either of us could jump about a stage, singing, playing instruments and generally just having a great time!!!!!!

What made it even more special for Pauline and I is that we are both carers and to get a night out - especially during the week and know that Luke and Peter are looked after (so we don't need to worry or rush home!!).

So this was bliss and it made the little drinky poo go down a  lot better!! ( thank you Pauline!!!!)

We also met our friend May at the concert, along with her hubbie Pat. He had been told to bring plenty cash, lest the 3 of us get lifted by the police and we needed bail money!!!!!

The songs are brill (did I mention that?!?!?!)
Mainly, I think because they are well written about life and experiences that many of us have. And they are so well sung. And they seem to enjoy what they do!!!!

And thanks to our taxi service (aka Lou and Andrew!!) we got there and home safe.

Still singing away!!!

We tried to convince them it was a rubbish concert, but I don't think they believed us!!!!

Oh, and the Sunblest bag - Sunblest is a brand of bread and comes in the plastic bag type covering. When the bread is done, people will keep the bag and use it to put there lunch sandwiches into it.

See us Glasgow folk - we were into recycling long before it became trendy!!!!!

After the Referendum...............

............................Well, wasn't that a roller coater of 24 hours, topping off 2 years of debating, talking and working out what way to vote.

And working out WHY you wanted to vote that way.

It's now Sunday evening. Nearly 3 days since the polls closed at 10pm on Thursday evening.
My life hasn't changed THAT much in the past few days.
I still listen to Peter laughing at whatever he has on his laptop, or whatever DVD he's watching.
I'm still listening to Paul doing his music practice.
Matthew still going off to work in the morning, Lou popping in and out and the cats still need fed.

But yet.................................

I still feel as if my country is changing and i'm not sure what to make of it.

Scotland voted No to independence last Thursday.. Yes - it was a 55/45% . Enough to ensure it was an ok result, but not exactly a thumping "we want to stay in the Union" vote.
After all. 1.6 million of the registered electorate voted to GO.

That is a fair number of people in a small country.

I kind of came late to deciding what way to vote.
Some of the girls on a carers group were more active about the referendum than I was.
But about 4 or 5 months ago, I had a chat with one of the Dads at art class. I kind of wanted to see what others were thinking.
He explained Constitutional Law (well, as best you can in a short time) and I began to think "not fair" when he told me of things.
So I asked more questions of people and kind of got to the stage I knew i'd vote yes.

But it was annoying that the leaders of the 3 main Parties barely looked in our direction.

They were telling us from afar "don't leave - we love you".

Eventually, hoddit, doddit and the other one,........................... Sorry, Cameron, Clegg and Milliband got there act in gear and got on a train to Glasgow.

But just seeing them on the news made ne want to stick my foot through the tv and certainly didn't want me to vote for them.

I was at a meeting with the DFM last Tuesday, along with about 20 other carers. This was a great morning - I was so inspired by these woman, who till then, I had only met on line. (and a couple of guys as well!!)

Each one of us asked questions and we got answers.

If I hadn't already known I was voting yes, I would have decided there and then that I was.

But alas, the results were not to be.


The aftermath............................

Well, Friday night in Glasgow city centre was not a nice place to be - and I am so glad I wasn't there.
But the less said about that the better.

What IS annoying me - and many more - is the fact that Hoddit, doddit and the spare promised things for the Friday if it was a no vote. They would look after us.

But the goalposts have been moved and we still wait to see what they will offer.

I have heard that at least one ex Home Secretary has said that wanting to be independent of the UK should be banned.

(Please remind me where I live. Is it the UK in the 21st century, or Russia/Eastern Europe in the 1950's or in a part of the world where you are not even allowed to vote, never mind even think that you could get up and aske for independence????)

BUT  - what has happened is that people have come out in their thousands, millions to vote either way .

They have talked, discussed, argued, persuaded.

No longer will we be silent.

Lynne, Fiona, Jacqui and Kathy - and all the others in our carers on line group, it will be a privilege working with you in whatever way to get out message across, make people listen to what we have to say and work towards making sure that not only are our politicians held to account, but working towards another referendum, whenever that will be.

One more day...........................

..............one more day to the referendum.

We have listen to debates, talked to friends, work mates, even talked to random strangers.

We've read the fliers, the books, the pamphlets and the papers.

Some of us have even wanted to put our foot through the TV when things have been said!!!

So you'd think we'd know what way we're voting.

But some still don't know.....

That is their right, I suppose, but I am hoping that people do come out and vote. I do care how the vote goes, but I also respect other peoples wishes and I am not going to jump on them and tell them they are wrong.

What I WILL say is this - I have met a lot of people on line who have been passionate about what they have to say. I have talked to people and learned a few things - which is no bad thing.

And yesterday, I got to meet some of the on line carers that I have got to know.

About 20 of us had a meeting with the Deputy First Minister.

First of all, it was a privilege to meet these carers, who I "just" knew from FaceBook. It was as if I had known them for years and they were all so passionate about their caring rolls. Not all of them care for young children, some care for adults children, some for parents, some for partners.
We all have different issues, different things we wanted to ask, but to be honest, when I heard the questions, any one of them could have been asked by any of the carers.

The DFM sat with us and we told our concerns - individually.
She listened and never once said that any issue we raised was stupid or not worth giving a reply to.

Even the people who were undecided, she gave us all time.

To be honest, up till about a year ago, for me, she was just a Politician you saw on the news.
Then, one evening, while visiting a friend whose son had just died, she came in to pay her respects and talk to the family.
No big show, no fanfare of trumpets. It wasn't till my daughter nudged me and said "look who has walked in".

She didn't need to be there.
She could have turned up to make herself look good.
But she didn't.
She just wanted to help comfort a family at a time they were grieving - just like everyone else who was in the house that night.

So she certainly went up in my estimation.

And yesterday, listening to us all - she could have said she didn't have time, but she made the time.
There were tv crews and cameras.
But they were asked to leave so we could talk without wondering if what we said would be taken out of context or twisted by some one.

The best photo for me tho, was the one with the DFM munching one of the cakes that Fiona had made!!! She actually made cake eating look almost good!!! (the cakes were lovely - right down to the little signs that said yes!!!)

So Lynn, Fiona, Colette, Alison and all the rest - it was great to meet you and I would love to do something again (even after the referendum with no tv cameras!!!)

And whatever the result, work on the future of Scotland starts 9am Friday morning.
If Fiona brings the cakes, i'll make the tea!!!!

Don't you just love a man who gives you free....................

........................tickets for the Commonwealth Games!!!!

We had all the hassle of not actually getting our opening ceremony tickets because something went wrong with my credit cars.
I've been moaning for centuries that it was a load of hassle having the games in the city - roadworks, diversions, blah, blah blah

Yeah - just call me the Grinch, cos I am!!!

The games started on the 23rd of July.
I took a mad notion of trying to get tickets for something, Anything.
Just so we could say we had seen something.
But if we could afford it, the tickets were for something I knew Peter just wouldn't sit through.
Or the tickets were outrageously expensive - over £100 for one ticket for the opening ceremony!!!!

For that price, I could stay at home, order in a meal and drinks and STILL have money left over.
So I thought I had lost my chance.
Till Alisadair for Enable phoned me about something totally different!!
He got my woes and said he would go off and see if any of the tickets that had been given to Enable were still about.
Now - give that one of the senior workers had bee in to support Peter, said that there HAD been tickets, but she had been on holiday and as far as she knew, they were all gone - I didn't hold out much hope.

BUT - 3 tickets were found for the opening session of the Rhythmic Gymnastics on the afternoon of the 24th - were we interested?!?!?!?

Interested - I nearly bit his hand off and promised to be the bouncer at his stag night!!!

SO Thursday morning we set off to collect our tickets at the office.
Then on to the Hydro to watch the event.
The Hydro is a new arena that has been built here in Glasgow. Only opened earlier in the year, but by all accounts, people have enjoyed going to concerts here and the views of the floorspace were good.

Mind you - we were up in the GODS!! The ticket should have come with some oxygen and a full kit of climbing gear!!!

But once we got the seats and settled down it was good.
Views were fine and ok - we couldn't see the screens that the results were on because of lighting rigs, but that was kind of minor.

The event was the hoop and the ball, so all the contestants had 2 routines to do. It was amazing watching them perform.
And the noise the spectators made - if you were Scottish, you got a cheer.
If you had a Scottish sounding name., you got a cheer.
(pity the poor South African girl wedged between 2 scots!!!!)

If you dropped the ball or the hoop we gave them a cheer, because after all the hard work you've done to get here - well - a cheer is good!!!

Peter did do well and enjoyed most of it, but by about 3, he really was getting antsy and wanting to go home!!
But not before we posted selfies on FB and Twitter, just to let people see we had been there!!!!

Our journey home was longer than usual, mainly because of all the extra people and traffic, but it was ok. One couple asked where they should get off to go to the swimming, so we kept them right!!

We've been watching a lot of the events on TV and to be honest, the weather up till yesterday was great.
Sun.
More sun.
Oh, a gentle breeze.

But now we're back to the summer default - rain, rain and eh - more rain!!

To be honest, I have been avoiding the centre of Glasgow most of the time. Mainly because of the crowds and knowing what Peter is like if it's busy and someone just stops in front of him, or accidently bumps him.
We did got to George Square last Saturday - got a couple of pics at the big event logo and had a bit of a wander. There is also the Merchant City Festival going on just now, but looking up the side streets, I decided to give it a miss that day.

But it was nice being in the crowds.

My friend and I were going to take Peter and her son today, but the rain has been almost non stop all day, so we thought it best to stay put at home.
Just as well really - Lou came in this afternoon and said that town was really busy - probably busier that even last weekend.

So the closing ceremonies are tomorrow night.
It'll be kids of sad to see everyone pack up and go, but in a way, i'm kind of looking forward to being able to get into the city without wondering if the bus will be diverted.
Or if roads will be totally closed off an the bus will take me to a part of town I don't want to be in and is no where NEAR anywhere I want to be.

Mostly, I think the competitors have enjoyed being in the city and when I have been out, I've seen them shopping or out enjoying the various things going on.

Ok - so Usain Bolt has been quoted (and denies) that it was a pile of poop.

But who cares about him - he's ONLY the fasted man on the planet.

When you're watching the swimming and the guy who thought he'd get gold gets beaten by another scot - he he he - the look on BOTH their faces said it all and he bubbled tears when they played the Scottish National anthem.
Or the Scottish athlete who had been really sick, was in the hospital in the games village, drip in her arm 12 hours before her final - and she got a silver!! (I think the whole of the country were at her back shoving her round the track!!! 
Seeing the athletes who were gracious in defeat and gracious in winning, when they went to shake the hands of others

In the past couple of weeks, there has been barely a hotel room to be booked and some of the halls of residence at one of the universities were being used.

It's been a good party, but please - can you all go home now, till we tidy up and get back to normal!!!