Respite to the rescue (part 2)

So the lovely people from the hospice came over for our assessment and to properly meet Sam. As usual there was a million forms to complete, but I’m use to all that and to have to answer a whole lot of questions. I did find it difficult when they would ask whether Samuel likes this or that as it’s hard to tell. We know he likes being held and cuddles. We just accept that he tolerates other stuff – which basically means he doesn’t get upset or the item/activity in question doesn’t start off a seizure!

Anyway, we have our first play session at the hospice this week and I’m really looking forward to it. They said that I’m welcome to stay for the sessions (alot of parents do just to see what happens and how the child responds) or maybe go off somewhere for a coffee. It could be a good opportunity for a break.

They do arts and crafts and even baking with the children and when I enquired as to whether they still do all this with chilren who are very limited like Samuel, the nurses said that they most definately do and I’d have to get use to him coming home with lots of paintings and so on.

There is also a dedicated play lady who devises a special plan for the individual child and she has had some really good results. I actually had a look on their website last night and this lady was mentioned and she sounds marvellous.

The ladies seemed to really understand me, but then I expect they’ve heard my exact same story many times before. They realise that I’m keen to meet other parents so have said that they will put me in touch with some of them and apparantly the parents often arrange trips out and get togethers amongst themselves.

We of course talked about respite in the home. A carer coming here to look after Samuel. If I’m home (apparantly some parents choose to still be at home when carer is over but uses opportunity to have a bath, a snooze or do other things or they just enjoy the company of another adult around) then they will only send one carer but because of Sam’s level of needs if I’m not home then they will send two carers. I still feel a bit strange about having respite in the home, not sure why, but I think that if I start by being involved with the hospice and leaving Sam there, then I’ll get use to the idea of them looking after him at home.

I’ve also decided to stop referring to it as the hospice. I don’t like that phrase. Instead I will refer to them by their name, Julia’s House. I think that is much nicer.

I think becoming involved with Julia’s House could be a real turning point for both Samuel and me. For me it not only gives me the opportunity for a break but also the chance to meet other parents like me and a chance for me to feel normal. For Samuel, well he’s going to have a load of new people to cuddle and adore him. He’ll have more people to help him and bring out the best in him.

I just can’t wait.

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Respite to the rescue (part 1)

On Friday morning we will have our assessment for respite. At last.

As, rather disappointingly, none of Sam’s grandparents are confident to look after him on their own we only have Auntie C to do the odd bit of a babysitting so think that we really should get respite organised.

Part of why it has taken us so long to get here is totally our fault. You see when we came home from NICU, the Community Nurses (who I’ve not mentioned yet but are very lovely although stretched very thinly) immediately started talking to us about respite and that we should get in touch with our local hospice about it. But we had only just come home with our boy and didn’t want to leave him, didn’t want to share him. It was very bad timing and far too early to nag us about it.

So we ignored it. But then a few months before Christmas I went to an open day at the hospice and fell in love with it. The lady who showed me around (‘Play Co-ordinator’ I think was her job title – what a great sounding job!) was so nice, so kind and really understood where I was coming from. After all she had probably heard my story a million times. The place doesn’t feel like a hospice at all. You’d almost expect it to be very clinical and have something of a sad atmosphere, but not at all. It feels like a children centre, just with the odd oxygen cylinder around and a nurses station! It is bright, colourful and gave me a good, positive, warm feeling.

I’m not really sure yet how we will use respite, but I’m so looking forward to being part of the hospice community. To meet other families similar to us and a place where we can feel ‘normal’ – the only place I expect we can feel normal.

I’m a bit nervous about it but on the other hand think it will be lovely to extend Sam’s team and for him to have new people to cuddle and to flutter is amazing eyelashes at!

I’ll let you know how our assessment goes and when we’ve finally got our foot in the door.