Monday, 29 November 2010

Let It Snow

Elgin is covered in a blanket of the fluffy stuff.  For something that looks totally beautiful, it's causing complete chaos.

The schools are closed, roads are treacherous and I didn't dare risk Jack going into respite tonight!  It's not that I wouldn't have gotten him there but getting him back would be a huge problem cos the paths which my lovely dad already cleared, would be knee deep again by morning.  So literally Jack is trapped in the house until the snow shifts or it at least flattens enough to accommodate a wheelchair.

January this year, we were housebound for 3 weeks, as the snow was that bad!  People were saying, just clear your path and it will be fine.  That's all well and good but then what about the pavements?  For those of you that have had the pleasure of  pushing a child's buggy in the snow, then you know how hard that is, well a wheelchair is a whole new ball game.  You can push it from now til doomsday and the bloody thing just won't move!  It just aint happening people. :-)

Luckily for me, I have a carer (Marion) coming in twice a week for 3 and a half hours and that's when I can escape with Holly and fill up on supplies without having to put Jack through the trauma of being pushed and shoved on pavements that are impassible.

But I do so love the snow, especially the soft fluffy kind. So even though it causes me hassle I can't help but feel that it is a wee bit magical and transports me back to my childhood.  I think I am still very much in touch with my inner child cos last year, over Christmas, while we were walking our dog Shiloh, Holly asked me if I would like to make snow angels.

Well, hello? I was on my back in the snow in seconds, flapping my arms like a mad thing and she couldn't stop laughing cos none of her mates were willing to do it and here was her mum making a total arse of herself without any kind of persuasion!

Two seconds later and she'd whipped out her phone and was taking a photo of me.....bitch!!! lol  Then she was on her back on the snow joining me and the dog was looking at us like we had gone nuts.  If she could speak I am sure she would have said "what the fuck?"

After about 10 minutes and much giggling, we were caked in snow and the cold had set in but it was so much fun that to be honest we didn't really care.  When we stood up, the two of us looked like abominable snowmen, a rare sight at the best of times but never before seen in Elgin.  Thank god it was dark and luckily for me, the photo that Holly Dolz took was too dark so no photographic evidence!

Never mind though I did manage to nip out and take some photos yesterday so you'll get the drift!

So my lovely back garden takes on a whole new persona when covered in snow and the new patio looks unrecognisable.

And walking the dogs is now a barrel of laughs cos the puppy, Loki hasn't had a lot of experience of snow, so she keeps sticking her face in it and then sneezing.  She really is a numpty.  Mind you, they both are.  Holly took them both for a walk yesterday. They were running about like mad chasing the snowballs that Holly was throwing for them and they both jumped for it at the same time.  They met head on, in mid air and then there was an almighty crack and blood everywhere.  Shiloh, the blonde one (numpty 1) had broke a tooth on Loki's head (numpty 2) and it had snapped in half.

Holly was panic stricken and poor Shiloh was feeling very sorry for herself so Holly took them home pronto.  She was quite upset when telling me the story and all I could think was "oh fuck, it's gonna cost a fortune at the vet if it needs to come out!"  God I am so sympathetic.............NOT!!! Quick call to vet and OMG it was like phoning NHS 24! I was put through to this call centre and was asked 20 questions and told I would be called by an on call vet in the next 10 mins.

Ten mins later, I was chatting to said vet who told me as it was her top middle tooth, it was nothing to worry about and to just give her paracetamol if she was in pain.  Well you can imagine Shiloh aka Numpty 1, milked it for all she was worth and Holly, who was feeling very guilty, fawned all over her as per the photo below.

She may be a numpty, but she has got Holly well sussed!

And twenty four hours later, as Holly wasn't around to fawn, she had forgotten all about it.  I have the evidence!  She isn't fooling me!

But then Holly came home and she is doing her dying duck routine again!  If you are a reader of this blog, you will know who she learnt that from.....chancer!

Sunday, 28 November 2010

The Quiz

Holly and her pals had a free period during the school day.  There were four of them and they decided to do a quiz about each other. So Holly and Liz wrote a list of questions about themselves and then they passed it around the group and they each had to write their answers. The other two in the group were Stevie and Connor.

Holly's eyes were dancing when she told me that one of the questions was:

My mum  -      Twat  or Legend

and they'd to tick the box they agreed with.  I am chuffed to find out that all three of her friends ticked that they thought I was a Legend.  High praise indeed from teenagers let me tell you and I was totally decked but what tickled me more was the next part of the question.

My dad  -       Twat  or Legend

and I laughed out loud when they actually made another box with "Square" above it and all 3 had ticked that.  I couldn't stop laughing cos to them it was more insulting for them to say he was square than an actual twat!

I am totally with them there cos personally I think I'd rather be a bit of a twat than a total square! I don't ever want to be a party pooper, life is way too short to not have fun.

Holly and I had such a giggle over this but then she told me that "mum, it gets better, read question 7"  So I did.

The question was the Top 5 favourite things about Holly.

Stevie wrote:     funny, awesome, babe, legend and YOUR MUM IS A BABE!
Connor wrote:   funny, random, awesome, good mate and WHAT STEVIE SAID ABOUT YOUR MUM!

They just made my DAY!  Woo hoo, little pleases little minds eh.

Thank you guys, you just made this mum feel on top of the world and hey, you're not so bad yourselves!

Friday, 26 November 2010

Genetics and all that Jazz

Jack had an appointment with Neurology in Edinburgh this week. It's an 8 hour round trip which I normally do in a day.

It was a fairly routine appointment, mostly to turn up his Vagus Nerve Stimulator and to discuss how we were getting on. His seizures are still a problem but we have some control now. He didn't react well this time and was quite twitchy after, more than usual, so we hung about a while to make sure that it settled down.

During the appointment, I asked about Jack's diagnosis, which I had been given when Jack was 6 from a Geneticist in Aberdeen.  I was told that he had triplication of chromosome 15 and very little else, only that it is not curable and not life limiting.  Since then I have been given differing opinions on this, some doctors saying that his genetic abnormality is not life limiting but the seizures are and vice versa.

I had to phone and literally nag for his karyotype, which they gave me over the phone 5 months later followed by a confirmation letter. I was even told by one doctor that this is information I didn't need but the support group that I had been introduced to after Jack's diagnosis said that I did!

So with that reluctance in mind, I haven't really pushed for more information re his diagnosis and have just surfed the net for the little information that was available.

But Jack's regression in the last 4 years has made me ask again.  Are the seizures causing this amount of regression?  Apparently not but his chromosome abnormality is.  Why is Jack worse than children with duplication of chromosome 15 I asked and was told it was because Jack had two problems on chromosome 15.  There is evidence of Angleman's Syndrome too but his EEG does not follow the specific abnormality of a child with Angleman's.

I was confused because my understanding of Angelman's Syndrome was that there was a deletion on the chromosome but apparently it just has to be inactive!!! The reason I knew this was because before Jack's diagnosis, this was the only syndrome that I had found through extensive surfing of the web, that matched Jack's symptoms and happy demeanour.  It was my insistence that they look into this that brought about his diagnosis.

So now they are going to write to the geneticist and the original neurologist who diagnosed him to ask if they could take another look at his diagnosis and perhaps shed some light because I NEED to know more!  I know it won't change anything but it will help me understand how my lovely smiling boy, who could walk, run and even climb is now confined to a wheelchair and can no longer walk, eat and rarely smiles.

In the meantime, I will just carry on doing what I normally do, giving him as much love, cuddles and fun as I can, cause life is way too short to worry about the things that I can't change. And that people is something that has taken me a long time to accept cos as a mum, you would move mountains for your kids wouldn't you?

Yeah well this particular mountain is immovable so I donned my hiking boots and I bloody well climbed over it instead!

So just out of interest, what "mountain" have you had to climb in your life and why?

P.S. If you are interested in Jack's rare chromosome abnormality then click on the link below

Thursday, 25 November 2010

Harry Potter Rules!

I know everyone is Twilight mad these days and why not, after all, the books are brilliant and the movies are superb, not to mention there are some pretty hot vampires in them.  Nor am I forgetting the very buff Wolf pack...........mmmmmmmmmmm..............yum yum!

BUT for me, the Harry Potter books and movies win hands down.  Yeah he definitely is more geeky than hot, in fact his side kick Ron is more buff than him but it doesn't change the fact that I totally love him! And Hermione rocks, she's THE girl!
I was pretty much a fan of the Harry Potter books very early on and even tried reading them to Holly.  She was 8 when I first tried to read them to her. When telling her a story, I would get right into the characters and give him/her a funny voice. We were doing really well with the the first book until Hagrid went to fetch Harry from the island his uncle had taken him to. I read as far as him breaking down the door and then Holly became hysterical!  I obviously made him more scary than he was meant to be and she pulled the duvet over her head and refused to come out!

How could she not want to read the books???? My girl was mad on books but I can assure you that she has never read a Harry Potter book since I put her off and I can not persuade her in any shape or form even now 8 years later.

YET, she has watched the movies and absolutely loves them so it doesn't make sense to me.  Although the movies are full of detail the books are ten times more detailed so she has missed so much and they are so so funny.

So now that she has seen the second last movie, she is nipping my head to find out what happens and you should see her reaction when I tell her that it's been so long since I read it, that I can't remember!  This is a totally alien concept to Holly who has a photographic memory and remembers the tiniest detail in books and movies, much to my disgust!

So what can I say about the new movie?  I loved it cos it stays true to the book and it was all coming back to me as I was watching.  Voldermort is still as slimy and creepy as ever and there are still some laughs.  The biggest change was in Ron who has blossomed from a boy to a pretty hot guy in a geeky kind of way.  Holly was literally drooling and I have heard nothing else since!  All the old favourites are there, obviously not Dumbledore but everyone else and it had just the right amount of suspense and kept me on the edge of my seat.

So if you haven't seen it yet, then get your butt to the cinema pronto!

And lastly, who is your favourite character???  Mine is Dobby,  He is so cute, brave and kicks ass when he has to, what more can you ask of a friend? and my second favourite character is Hermione, she gets Harry as a best friend and Ron as her other half.........woo hoo, what more can a girl ask for?!

Wednesday, 24 November 2010

A Trip Down Memory Lane

Today, 20 years ago, I had my first dose of Chemotherapy.  This is a long post, so bear with me.
I had been in hospital a month and finally the treatment was starting.  I remember the date cos it was my ex husbands birthday.

I had  been ill for awhile, about a year in total, suffering from extreme tiredness and weight gain.  It started just before my wedding the September before.  I went to the doctors and they reassured me that it was just the stress of organising a wedding.  But it didn't ease up and by that Christmas I had put on 3 stone!  Major trauma! Mr Blobby didn't have a look in!

By May of 1990 I was literally putting one foot in front of the other and sleeping all the time.  I saw the doctors more often than I saw my friends! Then I found a pea sized lump in my neck.  I was told I had swollen glands, then glandular fever then tonsillitis!  I was trying for a baby and was reassured that this was nothing serious and it was ok to keep trying.

The lump kept getting bigger but was growing inwards rather than outwards.  I could feel it inside my mouth.  Then I fell pregnant.  I should have been over the moon, which, don't get me wrong I was but instinctively I knew something bad was gonna happen.  Pregnancy hormones played havoc on my body and the lump then grew at an alarming rate.

I could actually open my mouth and you could see this "thing" pulsing in my throat.  It reminded me of the blob that Kelly le Brock turns Wyatt's brother into in the movie Weird Science! 

Finally, in September a GP sent me to the hospital for a Fine Needle Aspiration.  At this point I was so sick, literally, I could keep nothing down and the lump was cutting off my breathing.  I was like the elephant man, if I lay down to sleep, I couldn't breathe so had to sleep sitting up! No mean feat I'll have you know and really I should add that to my list of useless talents!

One Fine N Aspiration and 10 questions later and I knew that we were dealing with something serious, which was no surprise to me cos I had been trying to tell the docs for months.

A week later I was in hospital for another F N Aspiration cos the first one was inconclusive and maybe a biopsy.  I was just supposed to be in for the day so I went alone.  They did the aspiration test again and within an hour they came back and the surgeon pulled up a chair. He told me that I definitely had a tumour, that they were going to now take a biopsy to determine how bad it was but that it was dangerous to have an anaesthetic because of the baby so they would do it under local!  I was terrified.  Ten minutes later they had me in a gown and I was being wheeled into surgery.

The weirdest thing about having a local anaesthetic is that you feel it but it's not painful.  They covered my face so that I couldn't see them cutting etc and someone held my hand.  There was lots of tugging and cutting and at one point I screamed cos they had cut into a bit that hadn't frozen but they quickly topped up my anaesthetic and it was alright after that.

Back on the ward, I think I was in a bit of shock cos everything had happened so quickly.  In the afternoon I called my mum and broke the news to her and she cried.  I called my boss to tell him that I wouldn't be at work the next day and he was extremely pissed off! Two totally different reactions, I had to laugh.

That night, the nurses questioned me closely cos they didn't think that I had taken in the fact that I had a tumour.  I had, but I had been ill for so long that I was just so chuffed that someone was finally listening and doing something about it!  I was ecstatic!

The next day, my mum came through and along with my husband, we went home to Elgin for the weekend.  It was a surreal weekend.  My sisters and brothers were all gutted at this turn of events but I just kept smiling and laughing, being my usual self.

I spent the next 3 weeks in hospital, had a further biopsy and then the day of reckoning arrived.

Kathy was up visiting and we were rolling about laughing on the bed cos she had nearly fainted at the doctors having a plaster removed from a cut when two very official, sombre looking guys appeared at my bedside with a nurse.  They asked could they talk to me in private and I knew that my world was now crashing.

I came back about 45 minutes later and basically they had pulled no punches.  I had Non Hodgkins Lymphoma, had about 6 months to a year to live, couldn't keep the baby as wouldn't live long enough to give birth and so therefore required an immediate termination, body scan, 12 doses of intense chemo and 4 weeks of radio therapy.  They wanted to start immediately.  Ok, ok, stop the bus here.  Right, I know I am ill and I have wanted you to believe me but hey I wasn't planning on being this bloody ill, WTF???  Did you have to take me this seriously???

The day before the termination, I had a major wobble and just couldn't do it, wouldn't do it even!  My poor mum was distraught, crying and hugging me, telling me that I was HER BABY and she would do anything to keep me whereas she hadn't met my baby yet so her priority was me.  It struck a chord and I calmed down a bit.

I refused to go to the Maternity ward to have the termination so they took me from the ENT ward.  On the morning of the op, I had to have an x ray of my neck and an ultrasound on my stomach.  The lady doing the ultrasound asked me did I want to see the baby and I said no but then changed my mind.  I lay there watching that screen with tears running down my cheeks, privately saying goodbye and begging forgiveness to this tiny baby.  A couple of hours later, it was all over but still I didn't cry.

I lay listening to the two girls across from me reading their horoscopes out to each other.  When they realised I was awake, they asked me what star sign I was and I told them to guess.  They went through them all, avoiding the C word and when they had no other option but to say it, the looks on their faces made me laugh so much it hurt!  Yes my star sign was bloody Cancer, how fucking ironic! and the horoscope for that day was totally bang on! An hour later I had to use the commode as they wouldn't let me walk to the loo, that's when I saw all the blood and totally fell apart!

Five days later, I was lying flat on my back, traumatised after having had a body scan and two bone marrow samples take, one from my spine and one from my chest.  I was so bloody sore, pissed of and feeling right sorry for myself when in walks the Chaplain's assistant.  Oh sweet Jesus, this was all I needed!  So she sat there prattling on about how you only get what you can cope with and this was God's will and that I had to suffer cos this was all part of his plan and I totally lost it.

I told her what I thought of her God at this precise moment and her too in the finest language I could muster.....fuck, fucking and bastard spring to mind and the air was blue.  I have never forgotten the shocked and horrified expression on her face when I told her to "get the fuck out of my room" and if she ever dared to come near me again "she would rue the day!"

Twenty minutes later a nurse peeked in the door, waving what looked like a white flag and asking was it safe to come in.  I was mortified but the nurses thought this was the funniest thing they had ever heard and couldn't stop laughing,  It was pretty funny and suffice to say I never did see her again but I did read in the paper years later that the Chaplain of the hospital had run off with the Chaplain's assistant so I definitely think I was a positive influence on her, not!

Two days later I started Chemo.  The first one wasn't that bad, piece of piss if I am honest despite the fact that I am terrified of needles!

There is so much more to this story, I could write all day but suffice to say as I am writing this 20 years later, I SURVIVED!  Aye your shocked aren't you, you weren't expecting that little twist to the story?  lol  In the words of my lovely mother, who will be laughing up there right now as I type, "only the good die young and you have far too much mischief to do yet and anyway if you were even thinking about dying, we would just hold onto your hands and pull you back up!"

I was like "awww mum" then said" but don't you mean you would be holding onto my feet and pulling me back down?"  At which point she cracked up laughing saying " you don't seriously think you are going up there do ya?  You are far to wicked for that!".  Such faith huh?

Oh to be loved, warts and all.

So if you can remember that far back, what were you doing 20 years ago today?  Hope you were having a fucking better day than me, for sure!

Sunday, 21 November 2010

Smiling Through The Sadness

I started off this week feeling quite sad but by the end of the week, I was smiling.

I was sad because I was remembering my nephew, Derek, who died 11 years ago this week as the result of a tragic accident.

His death tore a big hole through the heart of our family and we never properly healed, we've just all learned to live with it in different ways.

He was such a great kid.  Beautiful dark eyes, eyelashes to die for, cheeky smile and often up to mischief.  He was a typical boy, into everything, fearless, always covered in cuts and bruises but he was happy.  That's how I remember him and today if he'd been able to stay with us, I think he would have been one of those guys who are effortlessly cool and so so handsome with girls hanging on his every word. 

Jack is a lot like him in looks. Holly adored him but being six years older than her, he struggled to be interested in this 4 year old with her pretty pictures of ballerinas and fairies but she didn't take it personally just trailed around after him, talking ten to the dozen bugging his happiness! He was extremely patient with her though and even had an interest in Jack, who was just a baby and didn't "do anything" but sleep and poop!

His favourite member of my family though, was my dog Hoggle.  Named after the dwarf in the movie Labyrinth.  She was a "Heinz 57"dog, you know the kind, made up of a few varieties but the most daft, crazy loveable dog you could ever meet. They were inseparable when they were at my house.  He would climb into her bed and cuddle up beside her, she would knock him over with enthusiasm when we were out for a walk and he would show he'd forgiven her by feeding her his lunch under the table when he thought I wasn't looking! The love certainly went both ways.                                                                                        

I miss them.I would like to think that they are both together now, causing mayhem and mischief and making people smile, with my mum looking on, shaking her head and laughing.

As the week has progressed, through being out and about, I have met and chatted to a few people and discovered that they too are suffering heartache or just struggling with life itself.

I talked to a girl I know,  in the next street and discovered that her dad had died a few months back, ironically from the same illness my mum had, Motor Neurone Disease.  As I walked away after chatting a while, I got to thinking that you really can't tell what is going on in people's lives because we all put on such a brave face.

It reminded me of a  time when I had gotten Jack out of hospital after his first seizure.  I was back home, in shock, staring out the window when a girl walking down the street caught my eye.  She was smiling to herself and looked so happy that I just wanted to smack her one!  I really had to fight the urge to run outside like a mad woman and yell and scream at her that I scared myself!  How could she be smiling when my world was crashing?

Later, when I was telling my mum this story, she was in hysterics at the vivid picture I had painted for her of me going ballistic at this poor unsuspecting girl but what made her laugh more was the fact that I had said that "of course, I would have asked her first, if her life was as peachy as it looked, cos you can't judge a book by it's cover and if she'd answered yes, then hell mend her!"  

Obviously I never attacked said victim and am not usually prone to such violence but in my head, she got the thrashing of her life!!! I had to take it out on someone!

It's true we all hide behind our smiles and it's not til you start to chat to someone that you discover so much. 

I have enjoyed these chats cos they have bolstered me up and made me feel less alone.  That and the fact that I have had TWO visits this week from my friend with perks.............ENOUGH SAID!

Then this morning, my gorgeous boy gave me the biggest smiles I have had in 4 years and my heart grew two sizes to big for a short time. I can't begin to tell you how important those smiles were for me this week and they were genuine, not seizure related in anyway!  It was truly amazing, what a wee star.

Then later on in the afternoon, being child free, I went to a craft fair at our local library. There were some beautiful things there and I could have spent an absolute fortune, if I'd had it but no such luck.

I did buy two little gifts for Jack's teachers by a lady who does the coolest cartoon characters on canvas.  Her painting are so bright and colourful that they just make you smile.  She sells her stuff at and they are very cool.

Above is an example of her stuff.  It's quite pricey on the web but you get it much cheaper if you contact her direct and she will paint whatever you like and also personalise them, so let me know if you want her email address.  Holly and Jack both have her pictures in their bedrooms and they do make me smile when I walk into their rooms.

I also met a lady who makes magnets and door plaques.  They were very pretty and some had some ironic sayings on them.  When we got to chatting, she told me that she started making them after she had a nervous breakdown.  She was an anaesthetist at our local hospital but never went back.  She had to keep her mind and hands busy so she started making these little magnets.  I was truly blown away by her honesty and once again was thinking, you just don't know what people are going through!

Above is a sample of little magnetic tiles from her website.  They are so cute.  She also can personalise them and change the colours.  She had these cool ones that you could just stick on the fridge at your friends houses as you leave, after maybe being over for a meal and drinks, which said what a great time you'd had.  Cool ideas.  Her name is Anne and this is her website

By the time I left the craft fair, I was a bit poorer but smiling from ear to ear.  It had been a good day.  And it got even better cos we went to see Harry Potter and The Deathly Hallows part 1 and it was ace.  The best part was, Jack didn't have a seizure at all through the entire film and kept raising his right hand and waving it in the air every time Lord Voldermort appeared on screen!  I think he was trying to cast a spell on him, my clever clever boy.

Friday, 19 November 2010

We Have A Winner!

Thank you everyone for your comments on my last post.  They all made me smile but unfortunately there can only be one winner, but then hey, you guys know that you are all winners in my book.  Sorry that's a bit corny I know but so so true.

It was very hard to pick so I gave that delightful job to Holly, my lovely daughter.

Who are they?... What are they?... who am I?.. What am I doing here?..Why am I naked in the supermarket? ;-)
By Kinks on Double Figures! at 09:52

Being a teenager she loved the total randomness of it.  So "Kinks" whoever you are, please can you message me your address and the Gilmore Girls Season 1 DVD will be winging its way to you soon.  Oh and not forgetting the wine.....white or red???  Just let me know.

For the rest of you, please don't be disappointed cos I thought I might do another competition for Christmas. Oh no, I said it, the "C" word...eek!!

Tuesday, 16 November 2010

Double Figures!

Once again, I am mega excited (doesn't take much, I know!).

This time it's cos I now have 10 FOLLOWERS!  Double figures, who would have thought.

Thank you, thank you, thank you people for listening to my inane drivel.  I feel the need to mark this occasion somehow and since my last post was about the Gilmore Girls, I was thinking maybe a copy of Season 1 DVD would be a great place to start!

So if you would like to be the lucky winner of this great prize (snigger snigger, I know but hey it's the best I could do in these poor times!) then please post a comment below my post about the Gilmore Girls telling me what Gilmore characters you have in your life and I will pick one out at random.  Even if you don't know anything about them, put a comment and you will still be in with a chance,

And if you are in the UK, who knows a bottle of wine may be added to heighten your enjoyment of said prize.

I look forward to hearing from you :-)

Sunday, 14 November 2010

Gilmore Girls

I have just finished watching the last episode of the Gilmore Girls for about the 5th time and I have already started recording the series again.

Omg I bloody love that programme and so does Holly.  She reckons that I am Lorelai  and she is Rory and my friend Kathy is Sookie.  Even Emily Gilmore sometimes scarily reminds me of my own mum, although she was a much warmer and loving character than Emily, the resemblance is uncanny when Emily is raising her eyebrows and expressing her disapproval!  (Sorry mum, but it's the truth!  No doubt I've earned another clip round the ear when we meet again in the afterlife.  Notice I don't say Heaven cos then you would all start laughing hysterically!!!)

Anyway, by being like Lorelai, I mean in character rather than looks cos I would never presume to be as gorgeous as her but I do possess some of her witty banter, one liners, randomness and of course her ability to constantly be in touch with her inner child.  So much so that my lovely daughter often has to question "who is the adult here?" when we are in hysterics cos I have been behaving like such a child and of course my answer is always "YOU! ".

And like Lorelai, I have not been very lucky in love, though I have had my share of dates, good, bad and indifferent but still have yet to meet my Luke.  Swoon!  That guy is so freaking gorgeous and yet they never seem to get it together instead she lets that eejit, Rory's dad, constantly mess with her head and they even get married!

Well you just know that marrying my ex is not a event that I am inviting! Once was enough, thank you very much but he did used to mess with my head a bit but now the LOVE GOGGLES are well and truly off so no worries there my friends.  I can hear the collective sigh of relief already!!

Unlike Lorelai, I had a very close relationship with my mum.  She was a very forceful character and on the rare times you didn't agree with her or didn't take her advise, then oh boy you had to have a damn good reason!  She used to say that she would walk away from a conversation with me, after giving me sound advice and thinking that I would follow it, only to find I would do the complete opposite!!! She was always like "what the f**k????"

My daughter is very much like me in that way.  No matter what advice I give, I know that she will make her own mistakes and decisions along the way, safe in the knowledge that I will be there no matter what.  I can't of course guarantee that I won't be laughing hysterically or raising my eyebrows in disapproval or that we will agree on everything cos you just know already that we most definitely WON'T!

Holly, like Rory, is someone who is sensitive, thoughtful and funny and she is quite clever, though not as clever as Rory yet but who knows.  She always champions the underdog, stands up for what she believes in and is very creative.  But most of all she is very very funny and she totally gets me.  There are few people who can have me hanging onto them, legs crossed for fear of piddling myself, crying with laughter.............and she is one of them!  and it's usually at my expense I hasten to add!!!

The Sookie character in my life, is my mate Kathy who incidentally is a chef,and like Lorelai and Sookie, we met when she came to work in the hotel that I worked in as a receptionist.  I was just 18 and she was 7 months younger. Like Sookie, she had an innocence about her that was refreshing and then she met me, this crazy wild party animal and life as she knew it has never been the same!

Sookie is an unstinting friend to Lorelai and that's what Kathy is to me.  She held my hand through losing a baby, went green when she saw the needles during chemo, made me laugh when I could barely lift my head, jumped up and down like a mad thing when I got the all clear, cried when she held Holly for the first time, and again with Jack, cried with me when Jack was diagnosed as disabled, at the death of my nephew, at the breakdown of my marriage and the death of my mum.

We have so much fun together. She has frequent moments of paranoia and I am the one who laughs and puts it into perspective for her, I appreciate her very "warped and twisted" sense of humour cos it's so like my own and her rare thoughts of pure evil make me laugh so hard cos it is in total contrast to the kind, loving, sensitive person she is. I held both her children on the days they were born and was so proud of her, my friend who managed this amazing feat when she faints at the sight of plaster coming off a cut or a needle and most definitely doesn't DO PAIN!!!

Her children are like my adopted children.  Her son James is 2 months older than Jack and I love how his mind works and how funny he is.  Instead of feeling jealous of her for having a healthy son, I live Jack's "what could have been" life through him and I think they would have been great friends and partners in crime.  Instead James can often be found, holding Jack's hand while they are watching TV or stroking his head if he has had a seizure.  He likes to make sure he is comfortable and constantly asks if his head needs to be propped up again and then he just does it.  He is going to be a great man in the future.

Her daughter Erin, is quite the little diva but in a good way.  She loves to perform, has some great one liners and can have me in hysterics 2 seconds after coming into my house!  She is 10 but already in teenage mode, god help Kathy but a lovely girl who is also very loving and caring towards Jack.

They both get on great with Holly although they have their moments! She treats them like siblings so therefore there are the usual falling outs much to Kathy and I's amusement but thankfully nothing major.

Not forgetting Rory's friend Lane.  Holly has quite a few of these characters in her life, and like Lorelai, I find myself becoming like their second mum.  Some of them even call me that and I am mega chuffed that they feel this way.  I think it's because they recognise the teenager in me!

So that's it, it's finally true, my life is a soap opera!!! But I bet if you think about it, yours is too.

So come on, tell me my friends, which Gilmore characters have you got in your life or are you like Lorelai yourself?

Feel free to comment below..........I await your words of wisdom..........don't be shy now :-)

P.S.  I also have a lot of other wonderful women in my life, you all know who you are and without these brilliant sisters/friends I wouldn't still be smiling today.

Monday, 8 November 2010

Intensive Care

As I was watching the firework display from my window on Bonfire Night, my mind wandered back to the same time last year.

Again I was watching the display from my window but back then I was crying silent tears of relief that we had gotten through the latest trauma with Jack.

Both Jack and I had been unwell.  I had Bronchitis and he had a chest infection.  After a couple of doses of antibiotics he was finally clear of it just in time to go into respite for two days.  Holly and I were going to Bristol with my friend Emma and her daughter Eilidh for a bit of girly shopping.

The flight was before Jack had to be dropped off at the respite centre so I arranged for them to pick him up from home where I had left him in the care of his granny.

I was pretty shattered, so was really looking forward to this couple of days away.

The flight was quite quick and we were soon shopping within no time.  When we got back to our hotel that night, I called the respite unit to see how Jack was and they had told me that he had had quite a lot of seizures during the first three hours in the unit, about 15 I think they said but that now he was sleeping.  I was quite concerned because Jack rarely takes clusters of seizures these days and if he had been at home I would have given him some rescue meds to stop them.  The respite unit couldn't do this as it was no longer in the protocol to give rescue meds for clusters!  All I could do is trust that they would take him to hospital if it got worse.

The next day at about 11.30am, I received a text from Jack's granny saying he was in hospital because the respite unit had blocked his peg.  This was a regular occurrence so I wasn't too worried but phoned the hospital anyway.  They were busy so it took a while to get through and they informed me that yes the peg had been blocked but that also his seizures were going a bit crazy.  I asked had he been given any rescue meds and was told no and I explained that it was imperative that they gave him some straight away as the more he fitted, the more saliva he produces and the more he would aspirate.  I was assured she would talk to the doctor and so I hung up,

I tried, after that, for my daughter's sake, to not worry too much about Jack as there was nothing I could really do and I knew that if things got worse then either the hospital or the respite unit would call me.  As the day wore on and there was no more news I began to relax and we were having a really good time.

Later that night, at about 8.30pm I received a text from Jack's granny saying that he had gone down hill a bit and they were worried!  I was quite shocked, as being Jack's next of kin, no one had called me to tell me of this latest development.  So again, I called the hospital who put me straight onto the doctor looking after Jack.

He pulled no punches and basically said that Jack had had so many seizures and he was struggling to breathe so they had called in an Anesthetist who had advised quite a lot of suction to drain the fluids from his chest.  He said that his chest infection had gotten worse which I knew was wrong as he was totally over it when I left him. The nurse had told me that they had in fact taken a chest x ray earlier in the day and found it to be clear.

He also said that for the moment he was stable but he couldn't guarantee that my son would be here in the morning if he carried on like this!  I was stunned and very upset and he promised he would call if there was more to tell me.

I didn't sleep well that night and was woken at 7.30am by a call from Jack's granny, hysterical because they were airlifting Jack to Glasgow and she wasn't allowed to go with him.  You can imagine my shock and I told her I would call her back.  I was shaking when I was dialling the number for the hospital cos I knew nothing about this and was confused, upset and angry.

It was the same doctor I spoke to again and he told me that Jack's breathing had worsened through the night, as did the seizures and he had had to be taken down to theatre and intubated as he was a very sick little boy. I was crying and yelled at the lady from the respite unit as she was on the ward but not with Jack who was all alone in the theatre and I just wanted someone he knew to be there.

I called granny Mckenzie back and explained that there was no room in the plane for her as there was a retrieval team coming to get Jack..

After hanging up, we quickly got dressed, packed our stuff and headed down to reception.  We got onto the computer there to see if we could change our flights from that afternoon to that morning but had no luck on the computer so we just jumped on the airport bus and hoped we would get lucky there.

Whilst on the bus, I got a call from Jack's paediatrician, Dr Leibenburg and he calmly told me that Jack was breathing better and looking a better colour and he reassured me that this was the best thing to have happened to him cos he really had been struggling to breathe on his own.   I felt better after hearing that and I told him we were trying to get an earlier flight back and would keep him posted.

At the airport, Easyjet were no help at all, even when we explained the situation, they wouldn't even put us on the reserve list to an earlier flight to Glasgow as it was already full.  We then went onto the internet at the airport and tried other airlines and they were going to be over £200 per person and I couldn't afford that!!! I wasn't sure if Emma and Eilidh were going to come with us and I didn't like to assume but then she said that there must be a cheaper way for us to get there, so lets try Cardiff airport and the relief must have been evident on my face cos she said, you didn't think we were gonna let you go on your own did you??

I could have cried, cos I didn't know what to think, my common sense had gone out the window and my emotions were all over the place!  After trying different airlines we realised it was SO not gonna happen and I suggested hiring a car.  Luckily I had brought my licence with me but not the paper part so we weren't sure if we would be able to hire a car but thank god they said it was ok, cos I think I might have collapsed by that point.

During this whole time, Emma and I had been making frantic calls.  Emma to her boyfriend Mark and me granny Mckenzie to arrange for Mark to take granny to Glasgow so that Jack would have someone there when he arrived.

Emma drove as I was in no fit state to drive and we left Bristol airport about 11am.  It was a long drive but it seemed to pass in a blur of texts to family and friends explaining the situation and calls to the hospital checking if Jack had been airlifted yet.

We arrived in Glasgow at about 3.30pm and got totally lost as the hospital is really hard to find but Mark phoned us and talked us through the directions until we arrived at the hospital and saw him waving frantically.

I felt sick when we walked into Intensive Care.  I didn't know what to expect, how he was going to look or how I would react so when the nurse came for me I was shaking.

Nothing prepared me for seeing my wee boy unconscious, attached to machines and lines snaking out of different parts of his body.  I just cried and cried and I think I was still in shock cos I couldn't understand how it had gotten to this.  When I had left my wee man he had been happy and well and two days later he was in intensive care, how could this be???

Emma, Holly and Eilidh got in to see him just for 5 mins but then we were told that it was parents and grandparents only allowed in.  It was really hard for me, cos Holly wasn't allowed in as teenagers carry the most germs so she had to sit outside in the little waiting room just off the ward.  So I was torn between my two children, one who needed me because he was very ill and the other who needed my reassurance that all would be well.

Thank god for friends is all I can say.  After Emma, Mark and Eilidh left for home, my friend Karen and her daughter Martine arrived.  They live in Glasgow so they took Holly to their house for tea and brought her back about 9 so I could concentrate totally on Jack.

He spent 4 days in Intensive Care.  When they took him off intubation he really struggled for breath and it was a very traumatic 24 hours of constant physio and suction and there was talk about putting the tube back in if he couldn't hold his own but he was a fighter and he held on.

It was Saturday and we were still in Intensive Care when granny Mckenzie mentioned that Jack's dad was on his way home.  She had already told me that she had let him know Jack was unwell.  As I have previously written before in this blog, Allan told me a long time ago that he would find out about his son from his mum and not me, so therefore I had left it to her to inform him.

Nothing prepared me for what she told me next.  I asked when was he arriving in the country and she told me that he already was here.  So I enquired where he was and she told me that he was in Elgin.  My eyes were huge as she told me that he had landed that morning in Aberdeen and would now be home in Elgin.

I was gob smacked that he would land in Aberdeen, hire a car and then drive 65 miles in the opposite direction from where we were and go HOME when his son was lying in Intensive Care! I could not get my head round this and was totally incredulous at his actions so much so that I had to leave the ward and get out of the hospital before I screamed!! I was so so angry and speechless at this news and I just wanted to scream so I did.  I ran out of the hospital, round the back where the car park was and just screamed and screamed til my lungs hurt.  God knows what people must have thought at this girl screaming and kicking out at the wall, tears running down her face,

Jack deserves so much better from his dad.  Later that day, he called through to Intensive Care and he confirmed that he was home.  I could hardly speak to him , never mind give him the time of day so I passed him to his mum.

My sister Kay arrived form Elgin the next day at about 1pm and my sister -in-law Jacqui from Edinburgh just before.  It was good to see them and they were allowed into IT to see Jack.  Allan finally arrived at 4pm.  Jack was just being transferred out of IT to the High Dependency ward.  I didn't go into the ward while he was there but my sister Kay, Holly and my niece Sheree did.  They came out about ten mins later saying that Allan had said that he didn't think Jack had looked that bad!!! Thank god I didn't hear him say that cos I swear I would have physically attacked him.  Even his mum could not get over that comment, saying how maybe if he had seen him like we had he wouldn't be saying that!

Thankfully I only had to put up with the man til the Tuesday when he went back to Elgin to pack his stuff to leave for Angola.  I did suggest he spend some time with Holly who by that time was back in Elgin, at school, staying with Emma.

He spent time with Holly on the Wednesday night and she had been messing about with her boyfriend and fell back and hurt her head on the stone step at Emma's house.  She seemed to be a bit sore but he didn't really seem to take that on and as Holly has had concussion numerous times she was starting to worry as she had a bad headache.  He chose this moment, whilst taking her out for tea to tell Holly about his impending marriage and how he wanted her to come to the wedding!

When she called that night after being with her dad, she was very upset about this news and his timing of it.  I think it was just the final thing for her and she was so low, missing and worrying about her brother and myself, being away from home, it was all too much and there were tears.  I felt so helpless being so far away from her and angry at the same time that he couldn't have waited until his next trip to tell her, as he wasn't planning getting married until April!  I was incensed at his total thoughtlessness and as usual his timing was impeccable!

Finally Jack was being transferred to Dr Gray's in Elgin. I went home the day before with my dad and Granny Mckenzie came home in the ambulance with Jack.  I had a weekend away arranged for Holly and I and I wasn't going to go but decided at the last minute to go as it was just in Aberdeen and we so needed a break. I arranged for my dad to look after Jack over the weekend in hospital so I knew he would call if there was a problem.

The weekend was good but I was really not well as although I had recovered from the Bronchitis, the dry air in the hospital irritated my throat and I developed a bad cough which I had suppressed while in the hospital, leaving when it got too bad so that I could cough up a lung then go back in!!! On top of that I was nearly at the point of buying shares in Soothers just to stop the irritation!

I took Jack home a few days later and it was very nerve racking being alone again after the support of the hospital, especially as I now had a mask which I had to use on him twice a day to help strengthen his lungs.
So there was no way, I was taking any risks by taking him out into the cold last bonfire night.  Holly wasn't feeling well either so as Jack lay sleeping in his chair, we watched them from Holly's bedroom window upstairs.

Since then Jack has again been hospitalised with Aspiration Pneumonia, this time it was in March and he spent his birthday, for the first time ever, in hospital.  It was a very worrying time but again he pulled through so now I don't just have the seizures to worry about, I have the added stress of keeping his chest clear!

I found out much later that the reason the hospital and respite unit failed to call me was because granny Mckenzie had told them, when they picked him up from my house, not to disturb me because I needed the break and to call her instead. Whilst I totally understand her reasons for doing this, I have since put measures in place assuring that no one can speak on behalf of me or Jack, unless I have given them written permission to do so.  I would never have forgiven myself if god forbid, he had lost the fight and I had not been there with him as I was blissfully unaware and busy shopping!

There are days when I could just pull the duvet over my head and refuse to come out to play but unfortunately you can't do that when you have a child who requires 24hour care so I just soldier on and keep putting one foot in front of the other.

Words cannot express my love for this child and how amazed I am at how he bounces back after each crisis but each one takes it toll. I can only take each day as it comes and hang on tight to him and hope we ride the storm together.

Thursday, 4 November 2010

An ipod is a dangerous weapon!

I'm used to Jack scaring me on a regular basis what with the constant seizures and now with the problems with his chest. After a while, what is so scary, becomes the norm so you get used to it.

Holly scaring me is something I don't think I will ever get used to! Holly you ask? but she doesn't have any health issues!

No she doesn't but she does have an ipod and headphones and believe me she is lethal with them.

I know, I know, you now think I have lost the plot don't ya but I most definitely have not.

My lovely daughter is music mad, just like her mum and just like me at that age, she is regularly plugged into her music. In my day it was a Sony Walkman and you could tell that a person was plugged in cos the headphones were quite big and so was the cd player.

These days, it's tiny mp3 players with tiny headphones so it's hard to tell, when someone has their back to you, whether or not they are plugged in or just plain ignoring you.

Holly often shuts herself in the kitchen, playing her music and dancing around. Usually I can hear the music cos she plays it so loud that I can't hear myself think. Other times, she just disappears into the kitchen and there is total silence which usually means she is plugged into her ipod.

This is when I literally take my life in my hands cos often I have to get into the kitchen to get stuff for Jack or make myself a cup of tea.

So I open the door and Holly is in her own wee world, dancing round the kitchen. I make big movements so that she can see me cos she definitely can't HEAR me. Movements such as jumping up and down, waving my hands to attract her attention accompanied by loud yelling cos you just never know she might just hear me after all. ( I hasten to add that jumping up and down is already a high risk factor for someone with big boobs, concussion springs to mind).

This goes on for a couple of seconds or even as long as a minute, then she will catch sight of me out of the corner of her eye and she looks at me, and I think it's ok, she's seen me but then she lets out a shriek that would not be out of place in a horror movie and I nearly jump outta my skin!

She is clutching her heart and near to tears cos I have scared her and I'm like wtf??? as my heart is trying to jump outta my chest and I have just lost another of my 9 lives!!! There then follows a conversation in "high tones" where she is upset and I am angry cos she has scared the bejesus outta me but it's my own fault don't you know cos she was plugged in and didn't see or hear me!

By the time we have both calmed down, I have forgotten why I went into the kitchen in the first place and she's taken on the persona of one of the seven dwarfs, usually Grumpy with a bit of Dopey thrown in!!!

I have tried just opening the door and just waiting for her to see me with no wild movements but no she still screams! Even with the door left open, if I were to just walk past the door and she catches sight of me, she screams! It's getting to the point that I am having to think twice about venturing anywhere near her cos even my mere presence whilst she is plugged in can invoke a blood curling scream as she seems to go off onto a different planet whilst listening to her ipod.

I have had a good long look in the mirror and believe me, I know I can look a bit scary first thing in the morning but after an hour or so I start to look semi decent. Honest!!!

There are times, I haven't even gone into the kitchen, just yelled for her help cos maybe Jack is having a bad seizure and as I am in the middle of changing him, I can't reach the magnet. Usually on these occasions she is not plugged in but playing her music really loud. By the time she hears me, I am hoarse and she is upset cos I gave her a fright cos I yelled so loud!!!


Usually we end up laughing cos hey it is quite funny really.......yeah if it was happening to someone else!

Like this morning for instance, there was no ipod to blame just her opening the living room door just as I got to it but she was still trying to watch the TV so she was turned away. Trying not to scare her I just spoke, saying something totally random like "where are you going?" and she let out this blood curdling scream and I nearly shit myself, I jest you not!

Her first words to me after she calmed down was "what kinda question was that? where did you think I was going, to get my breakfast...duh!" Then we both exploded with laughter cos well what can I say to that. Not only am I scary but I am a bit of a numpty too! Cheers Holly. I'm really not getting a complex or anything!

I thought things might improve when she bought herself a set of huge headphones, the old fashioned kind. At least then I know to avoid her like the plague when she has them on. That's ok when you can see her but when she is in her bedroom with the door shut and you are yelling like a banshee til you're blue in the face, so are then forced to stomp up the stairs, throw open the door looking wild and snarling, yes you would expect her to scream.

Yet still I jump about 6ft and she is totally traumatised by this angry, snarling lady who is now clutching her heart, using expletives that I know I shouldn't repeat!!!!

So I have come to the conclusion that my kids are trying to kill me! Jack with his many weird and scary seizures and Holly with her really dangerous weapon, the IPOD!!!! lol :-)

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