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#teammikaere

On making the boot work

By 25th October 2019 December 8th, 2019 No Comments

Fuck. I was putting Mikaere into his car seat when I felt his gastrostomy button pop out of his stoma. I heard his stomach contents dribble out and – fuck – was my first thought.

It was raining. It was just me and Kai and we were in the back streets of an unfamiliar suburb. I did a quick search, and sure enough, the nearest changing places facility (basically, a public toilet with a changing bench bigger than a baby changing table) is just over 15 miles away. Blah.

Mikaere’s button pops out all the time, and usually it’s no big deal. But we’re 40 minutes from home and I know he can’t have the button out for that long without it beginning to close. (Considering it was surgery to put it in, closing is not an option).

So, I do what I always do when I’m in a tight spot, which is move him to the boot of the car and take care of it. So I do, changing him, deflating the button and putting it back in with the gear we carry around with us in the emergency bag.

But I think how undignified for him. How cold and uncomfortable and just – not ideal for all of this to take place in the boot of my car, with the door pulled low to keep out the rain.

But the thing is, there aren’t enough safe places around where I could change him. Places with a long enough changing table to make it safe. Baby changing tables are everywhere, but they’re too short for him.

As I change him out of his vomity clothes, I think how awful that the quick, easy solution is here. Where anyone can walk by, where the breeze is cold.

I hate this. I hate that this is our life. The special needs life is just awful. I’m glad it was quick, but I wish we had the facilities nearby to manage without resorting to the boot of the car.

Also, as he gets bigger, the boot of the car isn’t going to cut it. What are we going to do then?!

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