‘Normal’ for a day

Last weekend we went to our first Julia’s House family BBQ. We weren’t sure what to expect but we knew it would be a good experience for us.

Being honest, truly honest, at first it was a bit daunting. We had never seen so many wheelchairs or special buggies in one place at a time. There was a fantastic turn-out and the place was full of children with all manner of additional needs/medical problems/disabilities etc.

But that feeling literally only lasted a few minutes and as we looked around, we saw what seemed like every other family with a feed pump or some kind of equipment attached to their wheelchair. We smiled to each other and my husband said: ‘at last we are normal!’.

No one batted an eyelid at us. No one stared. No one wondered. No one stood looking awkwardly at Samuel wondering if perhaps something wasn’t quite right. No one patronised us, felt sorry for us, told us how brave we were or asked awkward questions. Everyone just got on enjoying themselves (and trying to keep track of the more mobile children!).

I’m starting to get to know more Mum’s from Julia’s House so of course it was wonderful to see them and have a good old natter about all the things that are part of our everyday life – gastrostomy buttons, therapists, seizures, ketogenic diet and so on.

It was also lovely to see the carers and nurses there too, who all took the time to come around and chat with the families and children. Quite often I’d look up to see one of Sam’s carers or nurses holding his hand and chatting to him.

There were fun activities for all the children and their siblings – bouncy castle, craft tent, music, a pet corner (I believe a snake was available for ‘cuddles’), play sessions with the Play Maker, face painting, BBQ, ice cream and to end the day there was an amazing (and brave) fire display.

This wasn’t a fundraising event for Julia’s House. They organise this every year for families to get together and just enjoy themselves and enjoy being part of a very special community. I think Samuel, his Dad and I fell in love with Julia’s House all over again that day.

James is the cousin of Sam’s Dad and is climbing Kilimanjaro to raise money for Julia’s House to help them continue all the wonderful things they do. If you’d like to support Julia’s House and what they do for children like Samuel and families like ours. You can sponsor James at: justgiving.com/James-Day1

To find out more about the wonderful work Julia’s House does watch this video.

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All we’ve ever known

I’ve been reading more of the #definenormal blog posts which are part of the Define Normal blog hop challenge at Just Bring The Chocolate. I can relate to all of them in some way and to me, they sound all very, well, normal.

And that’s the thing. I’m so used to our little world, our little bubble, that sometimes I struggle to step back and realise what isn’t perhaps the mainstream normal.

It might be because Samuel is our only child. This is our only experience of being parents & having children. This is all we know.

Samuel has always had seizures. Medicines have always been a crucial part of Samuel’s care.

Samuel has never given us eye contact. He has never smiled. Never laughed. The only time we see him smile is when he is having a seizure and boy he would have one fantastic cheeky smile. But we’ve never had that so it doesn’t feel strange. But it does make me feel sad.

We get asked if Samuel likes this or likes that. We don’t know. How do you tell if a six week baby likes something? Sam might be 17 months old but is only really like a little baby.

But that is how he has always been. This is our normal.

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