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.


Auntie C

I really should tell you about our guardian angel. Seriously, I believe that we have a guardian angel, but she doesn’t have wings (well, none that I’ve seen), instead she wears a nurses uniform and looks after hedgehogs.

Let me explain.

Auntie C lives two houses up from us and we did know her before we had Samuel but only really just to say hello to. We got to know her husband much better as we were trying to sort out some problems we were having with the neighbour inbetween us.

But then Samuel was born and the day after he came into our lives, he was admitted to the Neonatal Intensive Care Unit where Auntie C just so happens to work. A few days into our stay (I’d not seen her working there at this point) we came into the unit, went over to Sam’s incubator and there waiting for us was an absolutely beautiful photo of Sam, his ink footprint and a gift bag full of baby goodies. That was the first of a thousand wonderful things Auntie C has done for us.

She has become so involved in our lives, such an integral part of our family that we asked her to become one of Samuel’s Godmothers when we had him Christened shortly after we came home from hospital.

Auntie C has been a nurse for over 25 years and in that time she has seen so much, seen just how damn cruel nature can be, so when I tell her the worst, the hard details of what the docs have said she doesn’t flinch. But I can see it in her eyes, the saddness, not just for Samuel or us, but for her as she absolutely adores him.

Until we start having respite with our local hospice, Auntie C is our only babysitter. Although our families continue to be supportive to us, emotionally (particularly my mother who has been terrific) and financially, they don’t feel confident in looking after Sam on their own and neither do any of our friends. So it is Auntie C who comes to the rescue!

But Auntie C’s wonderfulness doesn’t just stop there. When the premature babies in the unit reach 100 days, Auntie C (out of her own money & in her own time) bakes the parents a yummy cake to celebrate. When the premmies reach 1 kilo she bakes the parents a cake. When the babies have their first bath in the unit she gives the parents a tiny rubber duck for their memory box. When it’s Christmas, Easter, Mothers Day or Fathers Day she takes a photo of the baby and puts it in a card for the parents.

And there is more. She also takes in baby hedgehogs, injured birds, squirrels, ducks (yes ducks) and nurses them back to health before releasing them.

She is always on hand whenever we need some advice. Or just some moral support. When Sam’s Dad and I recently caught a bad tummy bug from when Sam was in hospital, she went to the chemist for us and brought round a gallon of lucazode while we were laid low.

She always buys Samuel lovely presents (and us!) and fancy dress costumes – his first Christmas while in NICU she dressed him as Christmas pudding, a bunny (with carrot) at Easter, a pumpkin for Halloween and this Christmas, well, he was a snowman.

No present, no card,  no words can tell her what she means to us. We could never in a million years repay her. But I know she loves her cuddles with Samuel and has spent many hours here on our sofa giving him a good squeeze.

To us she is our guardian angel and we will treasure her forever. x