A night at the movies

..................... No - more like a night on the tiles!!!

The time had come - it was Louise's Hen Night last Friday.

I had prepared well - bought Minnie Ears to wear (as well as 2 other pairs - worn by my friend May and Emma - Paul's girl friend) 
AND - the white Minnie ears, complete with veil.
To top it all off, Ariel's bouquet !!! 
IT HAD THE BRIDESMAIDS COLOUR IN IT!!
So now she says she may cancel her official bouquet and use that one!!!

(not bad for a 3 euro sale item in one of the shops in the Disney Village!!!)


Plans for the evening ..........

Some of us were meeting on the train, picking up the stragglers, oops, sorry, the Bride at the next station. Meanwhile, Emma and i put on the minnie ears, explaining to 2 little girls what we were doing that night and brought out the special ones. 

Of COURSE we made her wear them on the train!!!

The station in town is getting a lot of work done to it, so once we got to the top of the stairs, a nice lady gave us a creme egg each!!!

Well, after she laughed at the cluster of Minnies that passed her!!!!

So off to meet some others at the pub before getting on to the bonkers Bus .

Mind you, the pub was so busy, but we were a mere matter of a few feet away from a stag party. Needless to say, the stag's pals wanted photos with the hen!!!


I will say nothing of Emma keeling over backwards (and that was before any drink was consumed ) or about the Woo Woo Louise had in a drinks bottle.
Actually, least said about either the better!!!

So, off on the Bonkers Bus,
Loads of music.
Poles to Dance round!!
With the lack of tables to dance on/fall off, i did partake of a shimmy round a pole. 
No photos were taken - i think my beloved daughter was just a bit shocked at her auld, decrepit mother doing it!!!!

My friend May on the other hand, fell about laughing, as only and old friend can!!! 

Eventually, we arrived at the Normandy Hotel for out Night at the Movies tribute night.
Charlene met us there. She had already sneeked into the place we were having dinner to put goodie bags at our places and cupcakes with little rude things on the,

(this is a family show - i'll leave it to your imagination!!)

(Oh, and a lovely cake, the shape of which i will also leave to your imagination. But heck, 20 women on a Hen Do!!!!!)

It was a giggle looking in the bags and chatting. Catching up with some folk i knew while enjoying dinner.

The DJ and tribute band were ok - heard worse and we all got up to dance - after a fashion. Ann Marie is good at just telling you to get up!!!

But best part of the night - or at least one of them, was when the Bridesmaids were going to the  Loo.

Ann Marie followed them, tape measure in hand to get all the details to start their dresses!!!!

Well - she had them all there - captive audience, so she may as well get it done!!!

We had planned to stay till 2 am, but by midnight, May and i knew we wouldn't (and we'd listened to the DJ's rave music - trancey stuff that nearly did send us into a trance!!) May phone her taxi driver friend and asked if he could be ther at one.

Even Louise decided it was time to go!!

May made sure Emma and i got home OK.

Claire ,Lou's friend on the other hand had a more difficult job getting Lou home!!!
 He, he , he - Louise HAD picked up keys.

Just NOT the keys she needed to get into the house!!!!

Not wanting to waken the baby up by phoning, she went back to Andrew's mum's house to stay the night!!! 


Mmmmmm - i think that one might find it's way into a speech on the big day!!!

Mind you,it took my knees till Sunday evening to recover and the rest of my body till today. 

It was that shimmy round the pole what did it!!

It couldn't possibly be the Southern comfort !!!!

Two out of three ain't bad!!!

It's a while since I last posted.
Life has a habit of getting in the way!!!!

So, what we've been up to................

Peter and I were in Disney last month for a few days. Couple of iffy moments, which we'll gloss over!!!
But we had loads of brilliant moments.
Two of the biggies were helping to cut the ribbon to open the Park on the Sunday morning!! We were waiting for the park to open and chatting with a little girl and her mum. The cast Member came over and asked if Peter and Sienna would like to open the park.
Would they?????
Mmmm, is the sky blue?
Do I enjoy a prawn curry????

Of COURSE they would!!!
And if they don't, us mums will!!!!!!

It was nice to watch them cutting the ribbon and a big fuss was made of Peter and Sienna.

The other biggie was on the Monday morning. 
We had some time in the park before we headed to the airport.
So we went off to find a Princess.
We got our time to go to the Princess Pavilion and waited.
We had noticed Cinderella sneaking in.
I had to explain to him that we might not see Cinders.
So we waited.
Then our time came............

And today, Peter, you get to meet..............

Cinderella!!!!!!

So, I had one very happy boy, who met his favourite princess, and yes, he stole a kiss!!!!

Our time in Disney was great. We got to meet the Mad Hatter and make funny faces.
And we met Tigger at Dinner. We think he may have been Scottish, because when we were talking, he pointed to us, did a bit of a highland fling and did a thumbs up!!!!

We got home late Monday evening and were shattered.
But very happy!!

Plans for the wedding are well in hand.
Today was suit buying time for the men in our family.
Now, this may seem easy, but when is anything ever easy in my life!!!
For starters, we only had Matthew and Peter (Paul had Uni today)
Matthew said he could go and buy his suit himself. He didn't need help.

Not happening sunshine. If I have to get an armed SAS Guard to get you into Slaters, I would.

Men, they just don't understand that things have to coordinate, match, not clash and not make them look stupid.

So grumbling chucked in the bin, we went off.

Actually, it was less painful that Lou and I thought.
Suit, shirt, tie for Matthew and the same for Peter, plus shoes.
Alterations to be done and suits will be picked up next week.
So, 2 out of 3 suits bought isn't too bad.

We still have the hair and make up trials, the hen night (should be fun), nails to get done, alterations to my dress.
Thankfully my shoes have been dyed.

(Another thing my Hubbie just couldn't get!!!!)

So life is busy.
And I've not even started on the looking after Christopher when Loise goes back to work!!!!!

Who decided it was December already........

......... I mean, have I been sleeping or something?
Can someone please tell me what happened to this year please. It seems to have gone in a blur of baby and wedding stuff.

Or have I just been hibernating?????


So much for saying I'd blog more........

Pie crust promise - easy made, easy broken.

So.......... what we've been doing.....
Getting lots of cuddles from Christopher.
Which is fine and dandy till grandad appears and I don't get a look in.
Hmph. Methinks it may be the smallest dirtiest wheeling that boy ends up in!!!

And......... drum roll please, I have bought my outfit for the wedding.
A maxi dress, wrap and fascinator.
NOT what I had planned but I love it!!

You'll just have to wait for pics!!!!!

So, now that it's December, I suppose I should be thinking of Christmas. I have done the shopping for presents, am doing a mass wrap of said presents this week.

The first big christmassy thing will be the putting up of the Christmas tree.
Not quite yet, but most likely the weekend of the 12th/13th.
Gives Paul a break from the crazy exam/performance merry go round that he's going through just now.

It will be an afternoon of mayhem, having Muppet Christmas Carol on and dragging out all the decorations we have bought over the years.
The Disney ones of course!!!
And the one from Yosemite - raccoons on the fir tree.
And recalling the weird Russian couple who were on the bus to Yosemite with us!!!!
We may even have a blast of the Fairy Tale of New York as well.

Christmas Day is at Louise and Andrew's, which means half a ton of Christmas paper for baby to play with!!!

I am going to enjoy it!!!!

..........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!!!!!