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.


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