Monday, 30 August 2010

Jack's Little Gift

With Jack home from hospital and Kathy staying over, it was back to "training" for Kathy.

Jack had already had one change of clothes after flooding his nappy and within a short space of time had filled it again, this time with a no 2, much to Kathy's delight....NOT!

All was going well, she had more or less cleaned up his bottom when he decided that he might like to go again. Unfortunately for Kathy, she hadn't gotten as far as getting the new nappy on so it went all over the carpet! The first I knew that something was up was when Kathy let out a bit of a screech and I looked up to see her frantically trying to contain the onslaught! Jack meanwhile was lying there innocently looking at her as if to say "you have a problem with this?"

I of course, being the totally supportive friend that I am, fell about laughing and once I started, just couldn't stop. She on the other hand is giving it "AAAAAAAAAAHHHHHHHHHHH" and frantically looking about for wipes wondering how the hell she was gonna sort this one out.

Eventually I regained control of my hysteria, helped her mop up, fetched more wipes and nappies and we tried to clean up as best we could. Throughout this whole spectacle Jack lay there quite the thing and even had the cheek to laugh..........wee monkey. Mind you I was still laughing myself, mostly I have to say, at the look on Kathy's face when she realised she had major fallout going on and that if she moved a a mere inch she would also be covered in it.

Did I mention that Jack likes to share!!!

After we had gotten Jack sorted and the carpet cleaned, I was half expecting Kathy to say "I QUIT!" but no she is still willing to soldier on and for that, I will try and take a break from laughing and show how grateful I am! Tee hee hee.

Who knew that training someone to look after your child could be SO entertaining? All I can say is that I really can't wait til it is Emma's turn.

Welcome to my world, shit happens here :-) lol

Saturday, 28 August 2010

Breaking Down

Went into the school yesterday as the teacher at Kestrel House had called to see how Jack is.

They seem quite traumatised by Jack's first week and a bit at school and I can't really blame them. I feel a bit like that myself.

However, having seen Jack go through far far worse with his seizures it's quite hard for me to get across to them that this is nothing compared to what it could be. At one time Jack was having up to 100 seizures a day and when they were under control, went down to about 30 daily. Now finally we have the best control: an average of 6-10 seizures a day. Most of these are tonic clonic seizures and involve all of his body. What makes it harder is that Jack's seizures vary a lot and it's rare to have 2 exactly the same!

I gave them a bit of a background on how it used to be and explained that although 16 minute seizures are not good, it is not the worst it could be. As long as they follow the protocol to the letter then they are doing all the right things. This is the point where I broke down cos it is hard to reassure people that as long as they follow the protocol, what will be will be. I know that Jack is high risk for SUDEP (sudden unexpected death in epilepsy) but I hope that I don't have to face anything like that for a long long time. Just writing this makes me want to cry.

For those of you who don't know what a protocol is, it is a set of written instructions for school/respite/home care to administer rescue medication for seizures/ feeding regimes and giving other medication. A school doctor usually writes them up and they are reviewed each year. This makes sure that everyone who works with your child carries out these tasks in the same way.

Even with this in place there is a lot of trust involved. I have to trust that they will do everything possible to keep Jack safe and they have to trust that I will be there for them, supporting their efforts and available to reassure them whenever possible. I know it is a huge responsibility, I wear that badge every day and I know how daunting it is.

Hopefully the worst is over for a week or two. Jack hasn't had another big fit since Wednesday afternoon but he is pretty out of it and drugged to the eyeballs! If he still hasn't had a big fit by tomorrow then he will get home and then I will have my heart in my mouth for a couple of days til I get used to not having the support of the hospital.

I will quickly be too busy to worry I'm sure cos Jack makes me work my butt off. Typical man!

Thursday, 26 August 2010


Jack has certainly been giving the school a "baptism of fire".

Monday started with a 16 minute seizure which required rescue meds and he was fairly out of it the rest of the afternoon and evening. That wasn't including the usual amount of seizures that he has!

Tuesday he had a 14 minute seizure, then a cluster of them 2 hours later, the 3rd one lasting just over 9 minutes.

The school called when he was in the middle of the last one and I just got into my car and drove there as it is only a 5 minute journey. He had come out of the seizure but he looked pretty zonked so I just phoned the hospital cos I have open access to the children's ward and told them that I was bringing him in.

I was also concerned as he was really quite hot and flushed and thought maybe there was some sort of infection brewing.

They admitted him straight away and they took his temperature which was a little high and all his other observations and then we gave him more Midazolam. He should have been totally out cold by now but he was still awake by 9pm until he had another seizure and that was him asleep.

My poor wee man was so damn exhausted and looked so fragile lying cuddled up on the bed that I could feel the tears welling up.

I got home and Holly was already there after being out with her dad. She said she had gotten home at about 8.15 and once again I was infuriated that he hadn't come up to see his son, not even for 2 mins to check that he was all right. He didn't have the excuse that he wasn't in the same country this time! AAAAAAHHHHHHHHHHHH!

When she told me that, I just burst into tears cos his attitude totally sucks. That little boy deserves a better father than that. Jack is such a precious little boy and if he carries on the way he is, he probably wont live a long long life and his dad should be spending as much time as is physically possible with him and of course Holly but he just doesn't get it!

I have tried telling him. Holly has tried telling him and he usually says he will try harder. Then he starts off with great intentions and then it just fades into nothing. In Allan's world, you have to spoon feed him in how to be a dad and I am fed up doing it and so is Holly!

Granny Mac came up to the hospital though, as soon as Allan had found out from Holly. You might think it strange that I don't inform Allan myself but after we split up for good, he told me that he no longer wanted to hear about Jack from me as he would get all the info he needs from his mum. I don't know about you but there is NO WAY I would want second hand information about my child from anyone, mum or not!

Next day, I dropped Holly off at school and spent the day with Jack. He was sleepy and listless and not much interested in anything. He had a chest x ray and then spent the next hour coughing up a lung! I was pretty shattered when Granny Mac came to take over at 3.15 and still no sign of Father of the Year! I then raced to pick Holly up from school, nipped to Asda and made tea.

My mate Emma then phoned to say that she had been up to the hospital and Allan was there, complete with new wife and was spouting forth a lot of rubbish, saying that I haven't allowed anyone to stay overnight with Jack in hospital for at least 2 years now. What a laugh that is, since Jack was last in hospital in March this year and my dad was staying overnight with him and my brother Stephen was even lined up to help until we were transferred to Aberdeen.

No one has stayed over night with him this time as, I can't be expected to be there all day, doing everything I normally do AND then do the night shift as well. He is in hospital so therefore is their responsibility surely? I hasten to add that if Allan was that bloody concerned then he should be bloody offering to stay with his son! You won't be surprised to find that the offer hasn't been forth coming.

Ooooh that man makes my blood boil. A little knowledge is a dangerous thing me thinks!

Tuesday, 24 August 2010

It's Life Jim...

First week of the new school term and once again, chaos reigns supreme! My boy, in true Jack Mckenzie style, had a 16 minute seizure barely two hours into his first day at High School, requiring rescue meds. The first I knew about it was when he came home and it was written in his diary. Wasn't sure how to feel about that, because I was used to quite a few phone calls in primary school but decided to just go with the flow.

He continued to have his normal range of seizures the rest of the week and finished the week nicely with a 9 minute one on the Friday. He then scared the crap out of his granny by having a really awful one on Saturday morning while she was looking after him. Poor Granny Mac, when she was describing it to me, I couldn't even picture it cos it was so totally different to anything he has had before and he stopped breathing!

Sunday, when I dropped him off at respite, he had only had 3 that day so far and only had another one during the rest of the day so kinda thought that would be the worst over!

Not so, my boy had other ideas. He had 6 seizures through the night and then had another 16 and a half minute seizure at school around about 1pm. This time I got a call!

This was a shock cos he had hardly had any the day before so I was straight onto the Epilepsy Nurse to leave a message on her answering machine.

In May we reduced Jack's Keppra and so far there had been no major problems with the reduction but as it takes a while to come out of his system, this is probably it showing now. Hopefully the Epilepsy Nurse can tweak Jack's Vagus Nerve Stimulator to compensate for this new development.

My poor wee man is exhausted after a busy week at a new school and fitting more is seriously not helping! On the plus side, he isn't lulling the school in gently so therefore they are having to learn pretty fast and are quickly getting to know the Jack we all know and love.

Despite the seizures, Jack has been pretty bright in between times and has even been smiling and laughing at me. Cheeky monkey! Mind you, I would laugh at me too if I were him.

School for Holly continues to be full on and the homework and work load is already causing stress. God I am so glad I am not a teenager! Apart from in my head of course lol Thought I would say it before anyone else does :-p

Oh and to add to the fun, Father of the Year is home. After 5 days he made contact and wanted to see Holz and so we arranged that. No mention of seeing Jack or even asking after him. So what's new?

So there it is, it's life Jim.............just not as we know it!

Tuesday, 17 August 2010

First Day

Well it is finally here, the day I have been kinda dreading if I am honest. Today is Jack's first day at High School.

I have dreaded it but not for the reasons you were probably expecting. I know that Jack has such complex needs and requires total care, takes seizures every day and requires help with feeding and personal care. The school are used to children like Jack.

No I have been dreading it because, this is when the years start to rush by! Primary school years went by so very slowly and I was content with that but when Holly started the High School, the months just started to fly by and whoosh we were into second year!

Today she started 5th year. WTF??? How did I get here, was I snoozing or something and missed it?

She is such a young lady now and we have passed from the early teenage years where she walked like 'early man' and said "ugh" every time I spoke to her! Oh I so enjoyed that year......NOT! We have blasted through the Goth years where black was the new eh black but complete with chains and scary make up and the never ending sound of heavy rock blasting in both our ears, where there was more yelling than singing. I used to say that if I just recorded myself yelling at her to get moving every morning and put it to rock music, I would make a fortune!

Now she has progressed into grundge girl meets preppy. What the hell is that you ask? Well to be honest I don't really know but Holly definitely mixes it up and manages to look effortlessly cool. Gone are the chains and the make up is much more arty. Her taste in music has changed too. She still loves her rock music but now it is slightly more pleasant to the ears, has a good beat and the words are rocking. Ah now this is where she takes after her mum.

Despite these changes she has still emerged as the Holly we all know and love, just a bit older and taller, much taller. Not much wiser I have to add but that will come with age.

So with that in mind, I want to grab hold of Jack and not let go cos he is gonna start really changing and I am not sure I am ready. Stop the world, I wanna get off! Just for a moment, to take a breath.

Though being disabled he isn't going to be doing any 'early man' impressions but I am definitely sure that between his sister and I he will become a trendy style setter but I can't promise that there wont be any chains!!!

We've already been updating his wardrobe for going to the High School and gone are the younger kind of clothes cos he would SO not look cool according to Holly and we can't have that.

In the end, I can't stop the years from charging on but I promise that I will drink in every moment no matter how small and celebrate each new achievement in my usual loud and crazy way cos one of us has to stay the same don't you think?

Monday, 16 August 2010

The Midnight Beast

OMG I am so so excited cos The Midnight Beast are coming to Glasgow!

Holly got me into them after having to constantly watch them on You Tube. Not only is their music brilliant but their videos are really really funny. As Holly has them on her Ipod,. we have their music playing constantly.

There isn't a song that I don't like but my FAVOURITE track is the All I Want For Christmas parody. The first time I saw it, I couldn't stop laughing and now I know all the words. It's brilliant to play it full blast in the car, with the windows down, when we are driving past groups of people. Holly and I fall about laughing when we see their reaction to the words! Who is the child here huh??? God I really should grow up! lol

One of the tracks is called Daddy and Holly reckons it is Jack's song. It's about the band member Drew's dad, who went out for milk one day and ran off with a foreigner! Hilarious.

Holly and I, every time we buy a new CD, always choose a song that is most relevant to each of us at the time. Jack gets one too. Even though he can't choose for himself, we don't leave him out and we make sure he knows his songs.

Holly's favourite is Les Be Friends and Booty Call. We are such huge fans that Holly and Jack even have TMB t-shirts. Nothing to do with the fact that Holly has the hots for Stefan. I have to admit he is pretty cute though.

So next time your on You Tube, look them up, they have it all.........looks, talent and the comedy factor......what more can a girl ask for?

Sunday, 15 August 2010


I have always known that I had great friends but they have pushed the boat out for me lately.

It all started with my friend Emma saying one day, that she had been thinking about me while she was away on holiday. She had wondered if I would appreciate a holiday with just Holly and I before the craziness of life takes over from around Halloween til after Christmas. Did I??? Your kidding right? My answer woz a resounding yes but it all seemed like pie in the sky until Emma suggested that I train her up and she look after Jack for a week in the October school holidays. She said, just think about it, you don't have to decide now, it's just an idea!

Well, that idea has grown and after telling my friend in Aberdeen, Kathy about it, she said, "well if you are going for it, then count me in!".

So I booked it. Holly and I are off to Santa Ponsa, Majorca.

Now the training begins.

Poor Kathy had the first bout of training. The first night, she just watched what I did and once that was over, I told her that tomorrow, I would let her do it but that I would be there to guide her.

It wasn't until I stood back and let her do all the work that I realised just how much work was involved in just getting Jack outta bed!

The first morning, she had to draw up all the medication and then put it through his peg. Easy when you know how but very very scary when you don't. That damn Omiprazole once again caused problems and poor Kathy ended up blocking the peg! So I had to try and unblock it but to no avail so I just had to take it out and put in a new one. Kathy was a bit stressed and upset but I reassured her that it happens quite a lot, especially in respite and that I had done it once or twice too!

I even texted Emma to let her know so that she had a idea of what she was in for!

I found myself laughing quite a lot that day. Not because Kathy was doing all the work but because I had never had to stand back and think about what I do in a day as it is pretty much part of my normal day but she was forcing me to think and boy was it an eye opener! No wonder I am exhausted!

At one point, Kathy, with sweat poring off of her said, "god, I should lose about a stone in October! You must have some muscles on ya girl!". I thought this was hilarious cos skinny I am definitely not........I wish! If only it worked that way eh?

By the end of the day, Kathy looked poop done but said she didn't feel like it, whereas I felt exhausted and had done nothing but watch and teach! I did say half way through the day, that if after this she felt that it was too much, it was ok to say so and she could back out but she said no, she'd felt invigorated by her day but that ditto, if I felt that she couldn't do it then I should just say too. In my opinion, she did an ace job.

Also she has the added bonus of having her kids, James and Erin to help when I am away too. James often helped with the hoisting that day and was keen to bring Jack's chair through whereas Erin did offer when she managed to tear herself away from happy tv....aka Disney Channel! lol

Kids, don't you love them!

The next day, Kathy, who had obviously been dreaming about the Omiprazole, had come up with her own solution to getting it through the peg without blocking it, so she put it into practise and wow she had it sussed! Kathy, you rock!

Who knew I had such clever mates? :-)

Wednesday, 11 August 2010

Relationships - The outcome!

Last week was a tough week. Holly finally lost it with her boyfriend and ended the relationship. He still wasn't getting how upset she was by the whole scenario and couldn't see what the big deal was. So like a man!

We were sitting in the garden at my friend Heather's house. I had booked Holly and my "adopted" daughter Tammy a relaxing massage at Burnbank Holistic Therapies which Heather has just set up. Tammy had gone in for her massage first so that left Holly, Jack and I with Heather's two girls, Harriet and Mollie.

Holly and her boyfriend were busy texting back and forth when suddenly she said "Mum, I've dumped him!" Ten minutes later she was saying "Mum, have I done the right thing?". I could only reassure her that she had, because she could not cope with him going to stay with this girl and therefore it wasn't something she could accept and move on from. She was very flat and low and we all tried to cheer her up but to no avail.

Soon Tammy came back, looking like she had been asleep for an hour, which I think wasn't far off the mark and Holly went off for her hour of relaxation.

While she was away, I filled Tammy in on the proceedings and Harriet and Mollie, who are 12 and 10 both said Holly was a lovely girl and could find a much better boyfriend. Oh so wise at such a young age already! I did have a wee chuckle to myself especially when Mollie said that he was pretty silly and a smelly old bum cheese!!! This seemed to spark off lots of names and we were all chipping in with bits to add to that so that we eventually came up with that "he was a big, smelly, mouldy old bum cheese with lots of holes in it". Don't you just love kids lol.

Then Harriet fetched a piece of paper and pen and we had great fun writing it down and signing our names against it! Mollie was concerned that Holly wouldn't like what we were writing but I assured her that Holly would find this hilarious. How could she not? Soon we were on a roll and we added that he was "slimey and sticky like seaweed", like "baby sick and marmite" and smelt like "Victorian pee!!", this one was a Mollie special!

Harriet had left the bottom half of the page for Holly to write her own insults and we explained this to her when Heather was finished with her massage.

This definitely had the desired effect and put a smile on her face as we spent the next 20 minutes adding more insults to the page. These included "a big blood filled tick hanging from a dogs bum!", "Gollam poo" and my personal favourite "a big green soggy bogie".

I can't begin to tell you how therapeutic this exercise was and it was very tame compared to what names we could have called him! Laugher is the best medicine and we were all in hysterics by the time we had filled the page and were onto another!

Back home I had a very quiet daughter and it continued like that into the next day. I was aware that they were still texting and she then said she was gonna meet up with him and talk. I reminded her to be strong and stick up for what she believed was right, kissed her and sent her on her way.

I spent the next two hours pacing back and forth not knowing what to expect and then she phoned to say she was on her way home.

She was barely in the door and I was firing questions at her, poor girl. Basically they talked for what seemed to be forever and he FINALLY got where she was coming from and said he would cancel the trip as he wanted her back. So they are back together.

What can I say? Nothing apparently! I just have to be there to pick up the pieces again and as Holly herself said, "I know you think I shouldn't take him back but this is my first time at love, I have to make my own mistakes and I am not ready to let him got yet".

I couldn't have said it better myself :-)

Tuesday, 3 August 2010


I have spent the last week comforting my daughter who is going through some tough times with her boyfriend. She is only 16 but has been going out with him for nearly 2 years. He met a girl on holiday in Spain this summer and has booked to go and stay with her and her family in October, alone. Apparently she is just a FRIEND.

On the surface it would seem that way but since he came back from his holidays he has been distant and not interested in seeing Holly. She is distraught, angry and confused.

As I held her last night, my beautiful daughter a quivering mess in my arms, I felt helpless. Apart from holding her, soothing her and giving advice there is nothing I can do to take this pain away. Relationships are so very personal that when they go wrong the pain is yours and yours alone.

It's not like a bereavement, which can be shared with the people who loved the one you lost, it is something totally different and so very personal because it is rejection in all it's glory and all the feelings that go with it! This is true about any relationship whether it be with a lover, friend, family member, colleague. Everyone of us want to be liked and loved. We measure our worth by the people who love and care for us and become wounded and hurt when someone takes a dislike to us or falls out of love.

It is a funny thing that when a person hurts you, you automatically look inwards and blame yourself! It takes a long time before you see with fresh eyes that actually it isn't you, it's them.

Relationships are complicated because each person has a different view of what they are willing to put up with in a relationship, so what I would put up with, you might not and vice versa. I can only draw on my own experience to help Holly and considering what I put up with from her dad, I know for sure that I don't want that for her. At the same time, I can only guide her, not make the decisions for her and oh boy is this one of the hardest things a mum has to do!

My instincts are to kick his arse!!!! lol but I know that me doing that is so not gonna help, though it would make ME feel so much better!

Grudgingly though, I also realise that nothing is totally black and white, there is always a grey area and that there are two sides to every story.

With this in mind, I will continue to support her whatever she decides to do and grit my teeth and smile sweetly. Ooh that is gonna be an effort!

Now I know how my mum used to feel and I wish she was alive for me to discuss it with her.
Knowing her, she would probably wet herself laughing and regale me of stories re me and my many adventures into the world of boys. On second thoughts, maybe it's just as well she isn't around, I couldn't take the torture!!! :-)

Sunday, 1 August 2010

The man and the handbag

I forgot to tell you about the man in the garden centre yesterday.

Holly and I were wandering around the gift shop, minding our own business when this guy, who was walking past me, stopped to admire my handbag. I kid you not! He said that his wife also loved small, cute and colourful handbags and he shouted "darling" to no one in particular and started looking around him for said wife, still holding onto my handbag which was dangling from my arm.

Eventually, this older lady turned and looked in our direction, at which point he pointed out my handbag and quite frankly she looked agog with disinterest! I wasn't sure whether to be offended or not as I can tell you that my handbag is very very cute and trendy and I have had loads of admirers, all women up til, now I hasten to add!

He then noticed my unicorn keyring hanging off the bag and he showed me his wife's set of keys with a teddy keyring and said he hadn't come across anyone who liked cute things as much as his wife. Then he showed me his set of keys and offered me the keyring from it! It was a silver oval keyring with pink insert. He showed me how you could push it out and said it was perfect for fiddling with when it was in his pocket! OMG I nearly laughed then cos, he is kidding me right? So that's what men are fiddling with when their hands are in their pockets. I am at last enlightened!

Meanwhile, Holly is now breathing down my neck and I can't look at her cos I will surely crack up then so I accept the keyring and start trying to extract myself from the conversation which I at last manage to do.

Later in the cafe, we had a good chuckle about it and Holly reckons my invisible neon light was definitely on today, shining brightly for all the weird and the wonderful to be drawn to!

As for the keyring, it is now attached to my house keys and I will have a wee chuckle every time I see it and a great story to tell.

Girly Day

Holly and I played "hookie" today and took off to Inverness. Granny McKenzie was babysitting Jack so we were free for the day.

We were going to go and see Toy Story 3 but before that, I dragged Holz around a couple of garden centres, looking for patio furniture. After weeks of surfing the net and trawling the shops I still can't decide what to buy! I find something I love and lo and behold it's way outta my price range or it's in my price range but it's too small. Who would have thought that it could be so damn hard to get something just right? The problem is that it needs to be low maintenance as having a disabled child doesn't give you time to maintain anything but the basics. It also needs to last a long time cos they bloody cost enough!

Anyway, after coming away empty handed, we switched to girly shopping which turned out to be so much easier. Holly got lots of nice little bits and then we stopped at the new Costa's cafe and had a berry crush drink and sat outside, people watching. Being July, I was dressed for a sunny day but the sky was telling me otherwise and drinking a cold drink wasn't helping to keep me warm at all! That was nothing compared to the "brain freeze" I was experiencing due to drinking the damn ice cold drink too fast. I was already shivering and my teeth chattering when it started to rain and we tried desperately to huddle under the umbrella above us but it just wasn't happening so I suffered major brain freeze and downed my drink and we took off into a shop for warmth!

That was a bad move as it turned out to be Pets at Home so I had to then endure constant nagging for a fish, rabbit, guinea pig, rat etc etc etc, the list goes on. Need I remind you that the child in question is not a toddler or a small child but a 16yr old!! And boy can she nag. We were in there for 45 minutes and she subjected me to a constant yabbering in my ear, even when I met my friend Heather it didn't stop. But I managed to get my animal loving child out of there empty handed with the threat of missing the movie if we didn't hurry up, so that shut her up!

Toy Story 3 was just hilarious. Buzz Lightyear in Spanish mode was a total blast and the highlight of the movie. Only thing that spoiled it was some one insisting that we were in the right seats but wrong row and made us move, when in fact it turned out that they were in the wrong row but I was too annoyed to argue as the movie had already started and Holly was getting stressed. So much for VIP seats.

Despite that little blip, I had a great day with my lovely girl and we returned home, tired but happy.

Jack seemed to be having an ok day too but then at around 7.20pm he had a big seizure, lasting 5 minutes and had stopped breathing for at least a minute of that! He gave me such a fright and I thought, here we go, it's gonna be a 999 job I think, but then, with a lot of chest rubbing from me and Holly he stared to cough and splutter. Since then I have had a headache and no amount of pills is putting it away! Jack on the other hand is sound asleep and has no ill affects apart from the fact he is exhausted.

It's just another day in the life of me, no two are ever the same!

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