On being home

By 11th March 2017 One Comment

And just like that, we’re home. We haven’t  been home since before Christmas. Sam put away the tree on one visit earlier in the year,  but we still have all these unopened gifts sitting in the lounge.

It felt weird to leave the hospice, we said our gbyes quickly, and when we were finally out of the building, we packed up the car so quick! As it’s as if we were afraid we were going to be called back.

Being at home… it feels so good and so odd. We don’t have a routine at home yet, and all the added pressures of things like cooking and shopping and remembering to take the rubbish down have me a bit off balance.

Still, I’ll take it – sleeping in a proper bed again is so so amazing. Wearing pjs all day and not worrying about what your hair looks like. The sense of privacy, no nurses sticking their heads in to see how we are! All the things we have! I’d forgotten how much stuff we just have. How much stuff Kai has (he’s outgrown almost all the clothes we have for him!)

It’s amazing how much we take for granted, but I’m truly grateful that after a month in hospital, a week in intensive care and another month in hospice on end of life care, Kai basically said fuck it and got well enough to come home. I love him.


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  • Victoria says:

    I have been following your story for a while, my friend Charlotte in Perth has a little girl with NKH (Awesome Alice!) and I worked some years ago with a little girl (who is now a big girl) with the same diagnosis. I am absolutely thrilled for you & Sam that you are home with Kai, he is a little warrior and must get his determination from his Mum & Dad. Keep strong & I hope you get to enjoy staying home for a while x

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