One Step Closer

Jack was discharged from hospital on Wednesday and we are now at Rachel House the children's hospice. We are here til Saturday and then we get to go home! WOO HOO!

photo from here

It's not til I got here that I realised how bloody exhausted I am. Holly and I managed a wee walk around town yesterday and that was it as I was sooooo tired.

I will be so glad to get home, back to my own bed and a tiny bit of normality cos lets face it, nothing about my life is normal really! LOL

Holly and I are going to Stirling today for a wee bit of shopping. A bit of retail therapy does a person the world of good, don't you think?

Hope all is well in your worlds my little gigglers.

Hello! I'm back!

Hello from Scotland! Bet you thought I'd disappeared? Sorry to worry some of you but thanks for your emails asking if we are ok.

It has been a busy week.  I had a lovely birthday. Thank you for all your birthday wishes. I got lots of lovely cards and presents from my family and friends. My friend Kathy and her two kids came to visit and stayed at Rachel House with us. We visited the local Scottish  Deer Park and since I forgot my camera, I thought I would take photos with my mobile.  Now I've always found it quite difficult to take photos with a mobile cos you have to barely hold the damn thing cos otherwise there are fingers in the photo. So there I was, snapping away outside the outer fence of the wolf enclosure, when I lost my grip on the phone as I was taking a picture and dropped it inside the enclosure!

they were really pretty close up

I let out a squeal and Holly and crew came running to my rescue by grabbing some sticks and they managed to drag my phone to the fence where I clutched it lovingly! The noise I'd made had attracted the attention of some stags in the next enclosure so off we went and I took pics of them too. Barely 5 minutes later, we were back taking pics of the white wolf which had gotten up from sleeping and was starting to pace and I did it again! You should have seen the look on Kathy and Holly's face when I told them through my hysterical laughter that I had indeed dropped it in the enclosure for the 2nd time.  Needless to say, I was ordered to put the damn thing away! Spoil sports!

Holly and Erin

James feeding the deer

Back at Rachel House we all sat down to dinner.  I had barely finished when I looked up to see Kathy carrying a birthday cake complete with a 4 and a 5 on it. I'll kill her! LOL Everyone sang Happy Birthday and we all had a piece of that lovely cake. Turns out Kathy had brought a cake with her but the staff at Rachel House had already bought one. How cool is that? And they gave me a handmade card that Jack had helped them to make.

We spent the evening with Jack before setting of to see Harry Potter, parts 1 and 2. I have to say, seeing them both together was a brilliant idea and well worth doing. Everyone managed to stay awake and we arrived back at Rachel House at 2.45am, tired but happy. It had been a great birthday.

Jack's seizures seem to be calming down this last week. He went into respite on Thursday for the weekend and Holly and I flew to Dublin for her belated birthday weekend. The first day was spent strolling around the many shops there. We stopped at this chocolate cafe bar called Fiji's where I had a hot chocolate with chilli. OMG it was to die for, chocolate heaven for sure. It was the best hot chocolate I have ever tasted!

After much shopping we wandered back to our hotel and fell into bed. The next morning we were up bright and early as Holly wanted to go to Dublin Zoo. We decided to take the Hop on Hop Off bus tour of the city which would eventually drop us off just outside the zoo. So there we were on the top of the open top double decker bus, enjoying the view and the live commentary. It started off lovely and sunny but very soon it was bloody freezing! Being die hard tourists, we were not going to be wimps and move to a sheltered part of the bus, no no, not us, instead we giggled and shivered, ducked to avoid low hanging branches, oohed and aaahed at everything, giggled and shivered even more until finally it was time to get off the bus. Down on the ground it was a sweltering hot day! Who'd have thought it???

We had a great time wandering around Dublin Zoo and Holly being the same kid she was many years ago, insisted that I see every animal from EVERY angle and was not satisfied til I complied! From there we hopped on the tour bus again and was dropped off in the middle of a zombie apocalypse, I jest you not!

We stood and watched all these students in their zombie gear demand our "brains" as well as money for the many good causes they were raising funds for. Great great fun.

they were really getting into character

zombies marching for "brains"

some of the make up was ace

From there we went on the Viking Splash Tour which was hilarious and involved lots of yelling at unsuspecting Celts when they weren't looking. By the time we had finished on that, Holly's hay fever was really giving her problems and she was literary sneezing for Britain. She was so miserable with it that we jumped into a taxi to get us back to the hotel quickly so she could take more pills. Once she was medicated and provided with enough tissues to wipe half a dozen snotty noses, we headed back down to reception.

our Viking vehicle

Getting ready to roar at unsuspecting Celts

We needed life belts for the "splash" bit of the tour

I had arranged to meet up with C from the blog Looking for Blue Sky for a coffee.  She appeared about 10 minutes later with her daughter Smiley who was a bit under the weather. Jack and Smiley are very similar in ways, both have unique conditions and both face their disabilities with utmost determination and the purest of hearts. Smiley is the perfect nickname for her daughter who wasted no time, despite feeling under the weather, in giving us a beautiful smile. Considering it was the first time we had met, there was no awkwardness between us and we were chatting away, trying to cram in as much as we could in the little time we had as we both had daughters who were feeling lousy!

Poor Holly suffered the rest of the night and was much better by the time we flew back to Aberdeen as the weather was cold and windy and didn't affect her so much.

Back home, after picking up Jack and the dogs, I was hoping for a few days of calm but no, I got a phone call yesterday from the plumber saying they were coming today to start Jack's bathroom! I was in shock because I needed to clear the damn place of all his stuff and equipment before they could start so I managed to put them off til tomorrow and then we have a week of total uproar while the rip the bathroom apart and hopefully make it look lovely again.

So Holly and I quickly set to work and it is more or less done. Phew! No rest for the wicked eh?

Have a great day folks.

Rachel House

Hi honey, I'm home!

I have had a lovely week. After a pretty hectic Monday morning, the drive to Rachel House was pretty uneventful although we did get lost when we hit Kinross as I drove past the sign about 3 times before I noticed it.

Jack sitting in the back of the car

Finally we pulled into the car park and headed to the front door.  We were met at the door by a member of staff and were quickly taken to the room where Jack was going to be sleeping.  Once there, Caroline, who was to be looking after Jack that evening asked was there anything Jack needed straight away to make him comfortable and when I explained, she helped me change him and we let him stretch out on the bed.

It soon became apparent that the bed wasn't going to be suitable for Jack as the sides were even lower than a hospital bed and he would soon roll out of it.  Getting him back into his chair for a feed, we wandered through to the dining area for some food as it was dinner time.  Holly and I were a bit shy to start as there was already quite a lot of people sitting down tucking in but we soon relaxed.  All the staff, volunteers, families and their children all sit around the table at meal times making it a real social event.

Afterwards, Holly stayed with Jack while I got the tour.  All the children coming in to be looked after are all on the ground floor and their families are on the first floor.  I can't explain the atmosphere in Rachel House  except to say, I felt as if I was being hugged all the time, without anyone actually touching me. The care and attention they show the child and their families is like nothing I have ever experienced before. Everyone who works or volunteers there comes up and introduces themselves.  I was told so many names but very few that I could remember as it was just too much to take in.

Jack getting a foot massage in the Snoezelen

Holly lying in amongst the fibre optic lights

me, messing around

Jack checking out the lights

Also on the ground floor they have a music room, snoezelen, jacuzzi and a quiet room, which families could sit in and just be. The gardens are absolutely beautiful, all the work of a gentleman who has won awards for his own garden.  He was hard at work the whole time we were there.  Holly went for a stroll outside and got locked out and she was frantically trying to text and phone me but I had my phone on silent.  Finally someone saw her chapping at the window and let her in! Oops, tee hee hee.

The first night Jack had two quite big seizures.  The first one was with Holly while I was getting the tour, poor girl was getting herself in a bit of a state but she found us eventually! I was barely up in my room 5 minutes and they had to call me back but he was ok, turned out to be two seizures one after the other rather than one big one.

The next morning I was up bright and early.  Had breakfast, came down to say hello to Jack and he was sleeping.  He slept most of the morning as did Holly! I didn't know what to do with myself. Later that afternoon, Holly and I made a name plate for Jack's bedroom door.  We spent 3 hours doing it, much to the amusement of the staff and if I say so myself, it was a masterpiece! LOL.  This will go on his bedroom door each time he comes to visit so that we know which room is his.

Holly and I slogged for 3 hours doing this!!!

All around Rachel House I noticed Dragonflies and it wasn't until I got a peek in the quiet room that I was told the significance of them.

source

There is a beautifully illustrated book in the quiet room that explains the story, this is the short version:
Dragonflies live a relatively short time, and when they magically emerge from their infant state, there can be no turning back - they have to fly away.  But as they do, making their incredible journey, those of us who cannot fly - those left behind - are always touched by their brilliance and are left with remarkable and lasting memories.

Funnily enough, I've always been drawn to dragonflies. It's not just that they are so pretty but after being surrounded by them at the lake in Jasper National Park, Canada I loved how delicate yet resilient they were.  Jack and I followed one with my video camera while Holly and Father of the Year were on the lake in a boat. I was quite mesmerised and I could have stayed there for hours!

in the garden at Rachel House

another part 

and another

I found I was close to tears a lot, as was Holly.  Not because we were sad but because I felt safe there, protected and cherished.  It was as close to having my mum around as you could get.

I got chatting to a parent who had 4 children. The eldest 2 died because of life limiting conditions and now her youngest child has a life limiting condition.  How she kept going, I do not know but you just do, don't you?  No matter how crap my day is, I try to think that actually, there is someone out there, worse off than me.  It doesn't always work but hey sometimes I am allowed to think "Fuckkkkkkkkkkkkkkkk!" and feel woe is me. It doesn't last for long though.

The days passed in a blur of chilling and chatting and soon it was time to go home.  I didn't want to leave and do this on my own again.  I always feel like this when Jack comes out of hospital, the weight of responsibility weighs heavy on me but it soon passes when you have to throw yourself back in there.

I can't wait to go back in July.