Monday, 18 April 2011

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.

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.


  1. I'm so glad you all enjoyed your visit and that you are now looking forward to the next one in July. We have two of these in our area and that is what we are fundraising for now, to build a new one in Cornwall. In fact it will open at the end of this year and will be called Little Harbour. I have visited the other two on many occasions and they are just as you described. Absolutely wonderful places for the whole family. How tragic for that poor womanwho has lost two of her children, and now has a third with a life-limited condition. Poor woman. I loved the Captain Jack poster by the way - brilliant! Glad to be catching up with you again.

  2. So pleased your first visit was so supportive and reassuring...for Jack obviously..but I'm so pleased it was for you in particular, Lynne.I don't know how you cope on a day to day basis....well I do...because you love Jack and want to make sure he is cared for and aided with the things he cannot do for himself...but it so nice to read how you felt loved, hugged and so not on your own for these few days xxxx

  3. i'm so glad that ypu had a great time Lynne. It is such a great place - you can find places to just be and places to chat.
    Best of all, i know the mum you are talking of - she is such a lovely woman. This is me - shehas a great attitude to life. Yes, 2 of her children have died and she never forgets, but she has other children to look after. I'd love to say more, but i can't really - it's not my story to tell.

    Oh - and tell Jack that Lilo sends a pppuurrrrrr just for him - you were one of the 1st people we told!! Specially since we knew who else was going to be there!! Why d'ya think we kept asking if you'd met any families from our neck of the woods?!?!?!

  4. and i have just realised that i have posted this fron PAUL@S site - how did that happen??????

  5. I am so thrilled that you, Holly & Jack had the experience there and can return for another visit. From what you said it sure is a loving environment. That sign you and Holly did was absolutely awesome and the pictures were great too. Have a wonderful week & say "HEY" to Holly & Jack for me.

  6. What a great place! I love the way you described the atmosphere as feeling like you'd been hugged without being touched. That must have been just wonderful! The gardens are so nice too! I can't believe how green and summer like it looks there - what was the temperature? I think we all think/feel the whole woe is me bit occasionally, but never for long because we do say "fuckkkkkkkkkk" with such feeling and regularity we can't stay down for long! It's like what you say at the top of your blog - cry or laugh, you choose and that is soo true. We are in charge of how we deal with the hand we are delt.

    Anyhow, glad you are back and had a such a good trip.

  7. wait you got up early? no way!

    you are an inspiration, but even inspirations are allowed to have some why me and woe is me time...

    but you are in inspiration cuz you get back at it..

    and i admire you for that!

    glad you felt loved! you deserve it!

    and i love the line "father of the year" lol

    glad to have you back in the reader!

  8. I find it so humbling that you feel that others have it worse than you and it gets you through. That is a true statement but I can't imagine being in your shoes although I've been fairly close with a husband who had years of health issues. You are a walking saint in my book! And the pics are wonderful. Jack looks so comfy and cute in that chair!

  9. Wow, what a wonderful place, and I can imagine that I would feel the same - just sharing the load would be amazing. I have respite for Smiley once a month, but I've said before it would be much nicer to have help so that I could do more WITH Smiley and the other kids. Roll on July xx

  10. It's nice to know that there's a place that can make you feel good and safe...I hope you all are doing well.

  11. I am so glad you have found a safe place to go with Jack. Rachel House looks absolutely gorgeous and it sounds like they know just what you need! Hope your week has been going well :D

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  13. Thisisme - wow you have two down your way, we only have two in the whole of Scotland! Glad your fundraising is going well.
    Eternal Optimist - it was nothing like I expected and it exceeded all my expectations
    Julie - she was a lovely lady and she was the first one I told about your Lilo
    Odie - we had so much fun making Jack's poster for his door.
    Kellie - it was really warm! And such a beautiful place and you are so right about being in charge of the hand you are dealt. Wise words.
    Bruce - early mornings I know, I was totally mad but couldn't sleep! Lol as for Father of the Year, that's been his title for quite a while now!
    Bouncin' Barb - the secret is to not look too far ahead cos if I did, I might crumple and not be able to do it!
    Looking for Blue Sky - I know exactly what you mean, another pair of hands to take the load on a daily basis would be just amazing
    Chief - we are doing fine, how are you, I miss reading your words of wisdom ;)
    Jax - it was just lovely, hope you are having a great week too

  14. Sounds like a wonderful place. :)


Laughter is the best medicine and it's free. Thanks for visiting my blog and I look forward to hearing from you.

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