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.