I'm going down, I'm yelling timber!

Life in the McKenzie house is, as usual, a cocktail of everything, on the rocks, with a twist of lime!

Jack's health has been up and down but his new VNS seems to be working fine. No two days are the same: he can be so very alert and active and the next day he can be sleepy and listless. You just have to roll with it.

Holly has had her appointment in Edinburgh and the consultant saw a marked deterioration in her hip in the short time she'd had to wait to see him and that was just based on an examination of her leg! The hip by this time had degenerated so badly that he said she requires a hip replacement.

There were lots of tears but now that she has gotten her head around it, she just wants it to happen....NOW!

We had booked to go to Disneyland Paris for Christmas and we had asked Holly's friend Georgia to come with us to be the other helper. We were over the moon when she said yes, especially now since Holly was going to have to be in a wheelchair for the whole 5 days in the park. She can walk, just not very far.

It was really important to us that we went on this holiday without a fleet of carers for Jack but it turned out to not be as magical as we had thought it would be. I blame Disney for this because they have changed the priority card to cover every available disability making sure that they are being politically correct. So the card is no longer based on need, it is based on any disability, even if that is an aching knee which you don't need a stick for but you have a letter saying you need assistance. I know this because we met someone like that!!!

This meant that families of up to 12 people (that we saw) were being allowed to go on the rides together as they were a family but they wouldn't allow us, who had two wheelchair users, one who could walk a bit, go on any of the wheelchair accessible rides together because as both Holly and Jack had a priority card, they were treated as two separate parties even though we told them we were a family and that Holly could walk a bit just not long distances.

This, as you can imagine rubbed quite a bit of the magic off of Disney, coupled with the ignorance of other people using the park who thought nothing of stepping over the front of the wheelchairs rather than go around them as well as crowding around the back of them with no respect for personal space and boundaries. There was lots of other things too but it would take way too long to go into just now.

Despite that, the four of us had such good fun but really we could have been anywhere and I don't think we will ever go back again which saddens me quite a bit....but it really isn't the same now.

After we got back from Disney, Jack came down with a bug, passed it to Holly who lovingly passed it to me! I rarely get unwell but oh boy this was a horrendous one! I haven't felt that rough in a while!

Holly and Jack's dad came for a visit just after New Year bringing gifts for the kids. Before he arrived Holly told me that his new car (a Ford Mustang) had arrived and he was getting it on Tuesday. So I asked him about it and I nearly fell away when he told me it cost him £28,000.00. On further discussion it turns out that price is for the basic model and Father of the Year hasn't gone for that one but the sportier version costing a wee bit more!

I was totally stunned and it's not because it's him. Anyone who knows me, knows that I don't care about his money and even if we were still together paying that amount of money for a car would not sit well with me! BUT when I think about how I struggle financially just to provide Jack and now Holly with the things that they need and how anything they needs costs an arm and a leg because it's a specialist item....the idea of spending that much on something just for myself....well it just blows my mind especially when I think of all the other things I could buy the kids to make life easier with that kind of money!!!

A week ago we got word that Holly's hip operation is on the 15th February 2016. We knew it wouldn't be long but EEEEKKK!

So this week has been quite frantic trying to arrange care during that time for Jack who as you know cannot be looked after by just any old person. Luckily he is in respite for a part of that week so it's just getting care arranged for the the days leading up to going into respite that I have to worry about.

I have also had to order all the little bits of equipment that she will need for afterwards like a grabber, a long handled shoe horn, long handled shower sponge and a sock aid! She has already gotten to grips with the grabber and has used it to steal the glasses off my face and the socks of my feet!

My stress levels are already quite high at the moment because we are going through the transition with Jack from child services to adult services. As usual it's been a case of lack of communication between the powers that be and it has all been left to the last minute. He is 18 in two months so can no longer attend the respite unit he has attended for the last 15 years and it doesn't look like the adult respite unit will be ready for him by then so I face the scary prospect of no respite at all for an indefinite period.

Sometimes I totally want to resign as an adult, build a blanket fort with a bed of pillows and hide inside with all my toys and a great big bag of sweeties and refuse to come out!

Make A Wish.....cos dreams really do come true.

So much has happened to us this year that I am struggling to put it all into words.

Jack being in hospital was so stressful and emotionally draining that I didn't really think I had any energy for anything more. In the last two years he has scared the living daylights out of me. This time was more intense and much scarier. This time, I really thought I had lost him.

Getting him home was my only goal and once there, keeping him well. I had something amazing to look forward to but I had shoved it to the back of my mind cos I didn't dare believe it would happen.

In hospital, Holly kept telling him "it's ok if you aren't well enough to go to Euro Disney, we will be quite happy to chill at home" and she meant it, though both of us crossed our fingers, toes, legs...you get the picture.

The first week home was a nightmare as he was still not great but after that we didn't look back. He didn't bounce back like before which was worrying but not surprising. This time I had to take baby steps and not rush him.

I kept him at home for the first two weeks before tentatively trying him back at school part time. It went well and even though he was quite tired after, my gorgeous boy was getting happier and brighter by the day.

My boy was back and I felt like my heart was gonna burst. He really is such a wee warrior.

It was then and only then that I began to get excited about going to Disneyland Paris. This was no ordinary holiday though, as this was Jack's wish being granted by Make A Wish, UK.

The week before we were due to go, Jack's wish granter, Vicky, was on the phone finalising everything and then we had to wait for the Wish pack to arrive. When it did, I was completely blown away! They had thought of everything...from a crelling harness for the plane, paying for my parking at the airport, letters for the cabin crew, right down to spending money for Jack. I was blubbering within minutes of reading it all!

That's when the countdown began. Numerous texts back and forth to my friend Kathy, telling her how many sleeps we had left til we were off on our adventure! I was full of childlike glee. We had paid for Kathy to come with us, as we knew that in order to enjoy the time with Jack, Holly and I were going to need some help.

The morning of the trip, I honestly couldn't tell you who was more excited!! Poor Jack was dragged outta bed at stupid o'clock so that we could be on the road for 8am, which didn't happen but hey the intention was there!

Jack and I on the plane. He already has his eye on the guy's seat in front of him.

The flight was uneventful but Jack's wheelchair got damaged by the baggage handlers. Once we got him back into his wheelchair one of them just handed me the foot rest like it was a spare part we didn't need! When I said "no way, you broke it, so you fix it!" he then got a hold of another guy who stuck his screw driver into the side of the wheelchair and shrugged his head. Meanwhile I am frantically rummaging in Jack's bag for the allen key which is usually kept there but then I had a flashback of me removing it just in case I was stopped at customs with it. Aaaah!

Next thing we were being whisked off to an Air France desk where the drama continued. They had the ingenious idea of giving us the borrow of a new wheelchair which they planned to deliver to our hotel, later that day. When I asked would the new wheelchair have all the harnesses and straps on it that Jack's had they said yes but with a look on their face that said no! Turned out "no" was the correct answer. Meanwhile our transport to take us to Disney was waiting patiently so our escort went out to them, to let them know what was happening before he took Kathy and Holly out with all the bags.

Once they had gone, I demanded that they just tape the damn thing on, give me more tape just in case and let me go on my way. My Disney clock was ticking and I was getting pissed off cos we were missing valuable time. Jack, who was obviously bored by all the drama, slept through it all!

Once we got to the hotel, I started to relax a bit. We quickly got Jack changed and headed out for some fun.

Much later, with the bags unpacked, Jack medicated and asleep, I was rummaging in Jack's wheelchair bag again and hey presto...I pulled out the elusive allen key. I let out a yell of triumph, looked up to see Kathy and Holly staring at me in amazement before they both fell over laughing, spluttering that "if you had found it at the airport then we wouldn't have had so much drama!" I just stuck my tongue out at them! Smart arses!

Jack's first view of our room.

The rest of the holiday was like that. Holly and Kathy had to look after all the money, tickets etc as I had so much stuff to remember to do with Jack that I became incapable of doing anything else, much to the amusement of those two. It's fair to say that I wasn't safe to be in charge!

Jack and I having a wee cuddle.

We had so much fun that at one point I nearly peed myself laughing! When I said that out loud, Jack started giggling. That boy is more switched on than we know!

Wearing his new Buzz Lightyear Hoodie.

Toy story fun.

Waiting for the parade to start.

Cuddling up to Simba.

I bought a new camera at the airport but it never made it out of the box cos I guarantee I would have lost it. I was so scatter brained! I am sure I left the house with my brain intact but you wouldn't have known it.  Keeping tabs on my mobile was stressful enough! Thankfully Holly and Kathy managed to capture the smiles and giggles.

Jack was a completely different boy when we were there. He was taking everything in, was animated, smiley, happy and full of giggles. It was a beautiful sight after all he had been through. It brought tears to my eyes.

Loving all the bright lights.

On the Tram Tours ride,

Even the rain didn't stop him from smiling.

With the Chipmunks at a character lunch.

I got chatted up by a French man called Larry! lol He asked me if I only had two children and when I said yes he said "no I think you are going to have 4 kids, there are two still in your stomach so when are we making them??!!!"  I hadn't really heard him but I knew by Holly's reaction that she wasn't impressed! Kathy and I just fell about laughing when she explained what he had said to me while Holly ranted on about there being "no more babies, where are you going to put them, there's no room cos I still technically live at home!" The more she ranted the more we laughed.

On our last night it was Kathy's turn to get admired. This time there were no words spoken just the guy looking her up and down, undressing her with his eyes, mouth hanging open complete with primal animal sounds. We laughed so hard I thought I wasn't going to get breath! Think it made her night.

It was only a short holiday but boy did we pack it in. Make A Wish paid for us to see Buffalo Bill's Wild Wild West Show and have lunch with the Disney characters which was such a laugh. All the characters were so gentle with Jack who was lapping up all the attention, smiling and giggling.

At Disney  Studios

Goofing around.

More silliness.

Jack with his fellow super heroes.

Laughing at his mum.

It's Mickey time.

Jack has his eye on those whiskers.

Captain Jack.

Kathy modelling her Tigger hoodie.

Check these two out.

Cheeky!

Windswept and interesting.

Cutie pie.

One of the musketeers!

We were only away for 4 days but as it was quite physically and emotionally demanding, it was more than enough time away.

On the way back to the airport, our driver went out of his way to be so helpful. He was such a star. Once again Air France let us down. Our special assistance to get on the plane didn't arrive even though it had been booked and discussed at the check in desk. The ladies at the boarding desk were less than helpful and by the time someone came to help, the entire plane was already boarded and we were last on. As you can imagine, it was a bit stressful, especially since there was no one there to help us.

Holly and our lovely driver.

Once we were on the plane though, we had a good laugh about it cos really what else is there to do? No way was it going to ruin what had been a great time all round.

I have flown with Air France before and the exact same thing happened so I should have expected it.

We didn't arrive home until 10.30pm and it took three of us to get Jack ready for bed and draw up his meds. I think I finally fell into bed at midnight.

It was a few days before I came down off of my high. Thank you Make A Wish for a memory which we will cherish forever.