On leaving Kai behind and hating it

By 19th April 2017 No Comments

When I was heavily pregnant August last year, I was very very excited when I managed to procure two tickets to see Harry Potter and the Cursed Child. Fast forward to now, after months of waiting and our show date is finally coming up, and it became a bit of a logistical problem. While we were keen to go, getting care for Kai is difficult. He has an insane medication schedule, and he has equipment for feeding and there’s the testing that happens anytime we do anything with the tube.  Standard for special needs babies, but well over and above anything we could expect a babysitter to handle.

I have one friend (who I’m so grateful to) who comes on the occasional Monday and has taken on the task of learning how to feed Kai via the pump, and we have a hospice at home carer and a nurse who we’re allocated three hours every two weeks… however neither of those options were going to cut it for a whole evening.

So, we went back to hospice for respite. Logically it works out – they know him, Kai knows them and the space. Sam’s Mum came down to the hospice to spend some time with Kai. We stayed Tuesday night, and then on Wednesday morning Sam and I left to go to the theatre.


Leaving Kai, as logical as it may seem, best case scenario and everything – I did not want to. I did not want to leave Kai for a whole day. I did not like it at all. Leaving Kai behind is always, always the hardest thing. I’ve come to realise that I know Kai best. I know how to care for him best. So leaving him to hospice nurses, who are amazing, and wonderful, is always going to be, well very very good, not as good as me and Sam.

I know that we can’t do 24/7. I know that it’s unreasonable to think that we can.  That doesn’t mean that emotionally I’m on the same level. I’m not. Leaving Kai was horrid.

We walked out, leaving Kai in the very capable care of the hospice nurses and his Grandma and went to the theatre. We had a lovely day in London, fancy lunch and dinners and the theatre. In a past life I would have been ecstatic. In the After, London is very loud and people are very rude, and care about things that aren’t important.

The show itself… some of it was very clever. Some of the magic tricks were brilliant. But I think that my idea of what is important has changed, and with my baby in hospice I found it hard to settle. I think that at the heart of it, the story could have been told in one show and there could have been less dancing wizard intermissions. I was very glad when it was finished, which was not how I expected to feel at all.  I think that’s what happens when something from a previous life is out of place in your current life.

If leaving was the worst, coming back was the absolute highlight of my week. When we arrived at hospice, I skipped the signing in and hurried down the hall. I could hear him crying (break my heart) and when I peeked into the door he was having his nappy changed. I waited till his bum was clean and dry and scooped in for a cuddle.

Oh the joy, the absolute joy. Kai stopped crying, and smiled. He even laughed, the first time I’d ever heard him do so. He was very very happy to see us, and knowing we were missed – though I hate the idea that he even had the chance to miss us – and that he was glad to see us made me so ridiculously happy. 

It was a nice night out, and I was glad we managed it. I don’t think it’ll happen again for a good long time though. Time with my baby is well too precious for things like theatre. I feel like we’ve had so little time with him, I’m loathe to give it up for something like dancing wizards.

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