New chapter

You know the advert where the family have booked a package, all-inclusive foreign holiday and throughout their journey right up to and including arriving at the hotel they are treated like VIPs?

Well I had that feeling today. That lovely fuzzy feeling where everyone is so very pleased you are there and they’ve been really looking forward to meet you.

But we weren’t on holiday, we were at Julia’s House. It was our very first session there this morning and it was wonderful. When we came in all the carers and nurses appeared and said hello and were keen to meet Samuel (and I). I kept hearing, ‘Oh is this the lovely Samuel, can I give him a cuddle?’. The whole morning session was spent with him being cuddled by different people who were all just so lovely.

The place does not at all feel like a hospice. It is very warm and homely and the bedrooms are really cute and cosy. We were given a quick tour and then I was made a lovely cup of tea and sat down with a lady called Pam who will be one of Sam’s carers and we just had a lovely chat about Samuel and our world. I think most if not all of what I said she had heard before which I found very comforting. We also met Ashley who will be another one of Sam’s carers, he was very sweet with him and didn’t seem to mind when Sam farted and burped on him which I thought was a good sign!

There were a couple of other children there (who were very sweet) whose parents weren’t there and I was interested to watch the nurses and carers play and interact with them. They were really kind and made a huge effort to make things fun and interesting.

Even very limited children like Samuel get involved with arts, crafts, baking (!), gardening and all sorts. I’ve been warned that my fridge will soon be covered in pictures made by Samuel. There is a fantastic play lady too who gets really involved and puts together an individual play plan for the child, I just hope that Sam doesn’t sleep through his play dates with her!

It was so nice to see them enjoy Samuel and take pleasure in cuddles with him (his cuddles are fantastic I must say). The lead nurse even said about how cuddles were part of his emergency care plan which she’s not come across before, but thought was fantastic.

I was only there for about three and a half hours but I could hear a little voice in my head say ‘Yes I trust these people, I really do.’

My only reason why I feel that it may take a few sessions before I’m happy to leave him there on his own is because I want to feel that they do completely understand his seizures (as much as anyone can understand his seizures!) and I’m confident that they know when to medicate and when just to cuddle him.

But I can’t explain the feeling I had in my chest as we left.

For quite a while I’ve very much wanted to be part of the Julia’s House community, to meet other parents like us, to be part of a world where we are normal. A world where there isn’t anything we say, or anything that Samuel does that is particularly surprising or unusual. Just normal. Our normal.

But above all, the most important, significant feeling I have is that they will really help us get the best out of Samuel and will definitely be a big part of our world.

This is the start of an exciting new chapter in the adventures of Samuel Luke.

7 thoughts on “New chapter

  1. I’m so glad that you had such a wonderful reaction to this place that could change not only Sam’s life for the better but your’s as well.

    As worried as I always get when Liam meets new people and kids his own age (whether they are special needs or not) he is always better for it. Even though we sometimes think it is “safer”, we can’t keep our kids isolated in our little bubble.

    It sounds like a great place and a great fit for the whole family.

    • Thanks Eric.

      I must admit I was quite surprised at just how nervous I was, but the place has such a great atmosphere and is really positive. I felt so good and uplifted when we left, infact I didn’t really want to leave but we had a boring old appointment to go to. I just loved watching how they all fell in love with Sam and kept saying how gorgeous he was. I was beaming all the time as I felt so proud – “yep that gorgeous boy over there with the amazing eyes and eyelashes and the ability to give the best cuddles ever is MINE!”


  2. julia’s house sound fab! we often have such negative thoughts re hospices but they are often unfounded – they offer a fabulous community for those who go there – sometimes, i expect, it’s quite a priviledge to be involved.

    i don’t know if our local hospice offers respite for any one with eilidh’s condition – it might not be seen as one requiring respite as it’s just a physical disability. i should really look in to it because the point will come when grandparents won’t be able to babysit overnight…

    enjoy julia’s house and all it has to offer both you and sam xxx

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