On pulling off the neuro-typical band aid

By 5th April 2017 One Comment

I decided that, despite my dislike of being reminded just how disabled Kai is, I couldn’t avoid neuro-typical babies. That to try would mean becoming a hermit lady and never seeing any friends. Not the most viable plan I’ve ever made. As much as I’m still grieving Kai’s alternate healthy future, I decided that I would just pull the band aid off quickly and surround myself with neuro-typical babies. I wanted to be over this.

Conveniently, NCT has provided a whole group of lovely beautiful neuro-typical babies who were about Kai’s age. Since we were in hospice, I’ve ignored the whatsapp group we had. I hadn’t said we were back, and when they organised a trip to our local Baby Bach (a small concerto for babies in a local church) I was determined we would go. 

Can I just say that getting out of the house when it’s just me and Kai is a giant faff of a mission. Not only do we need the typical round of nappies, wipes, change of clothes and a bottle, but we also had to have the meds, the emergency notes, the emergency meds and the escalation meds. We had to have the feeding pump, the strips to check the ng, syringes for aspirates and the power cable (just in case). The last time I went out with our NCT ladies, it was coffee and I ended up calling an ambulance for all the seizures. I’d forgotten half the emergency meds and the power cable and ended up being quite stuck. Never again, now we travel with everything on the off chance we need to go to the hospital.

So, I drew everything up ready to go, for both the feed and meds we’d hit the end of, and the next lot just in case. I managed to load Kai into the buggy (I actually did it three times, after a nappy and a vomit required two hasty buggy evacuations) but when I locked the flat door behind me, I mentally high fived myself. We, at the very least, had left the flat.

I wish I’d looked out the window before we’d left, I might have changed my mind. It was windy. Hurricane windy. Pull tree’s down windy. From the gate it didn’t look too bad, so I chanced it. What a terrible, terrible idea.

The church was a 20minute walk away, with a big park in the middle. The walkway through the park was like a channel for the wind. Twice the buggy was almost turned over. With Kai in it, and my holding on. I might as well have been walking a giant sail out and about. Worse, was that I hadn’t realised that our weather shield was actually for the carrycot. Kai has grown out of the carry cot with his long legs, and was sitting the pram proper.  Which meant that the weather shield plain didn’t fit. 

Needless to say, Kai now hates the wind and screamed the entire way there. 

When we finally got to the church, I had another high five moment. We made it out of the flat, and despite the weather, to our destination and just as the concert was starting. No matter what else happened that day, we’d already gone over and above my expectations.

Which was pretty lucky, because Kai did not care for the concert. Not even a little bit. There was lots of screaming and at least half a dozen poopy nappies. It’s like he saved up all his poop and then released it all at once in protest. We spent most of the concert in the bathroom. Which, by the way, the baby changing station was in the disabled bathroom which I’m pretty sure no disabled person was going to fit in, considering how small it was. On top of that, perfectly capable non-disabled people had used the bathroom and it smelt rank. People are so gross.

So, instead of spending our morning like I imagined, blissfully listening to a world class pianist play some pretty music, we spent it stressed in a horrifically smelling bathroom. 

By the time Kai was empty, we had managed to catch the last song, which was pretty. And then the nursery rhyme time – that was pretty good too. I think Kai enjoyed that, it was much more upbeat.  And meeting our NCT friends. I’m so lucky to have banded with such an amazing group of ladies – they were openly happy that we were there and not at the hospice any more. Honestly, once I was there it was so easy to shrug off the fear. And oh, their babies. They have such beautiful beautiful babies. 

We spent the afternoon over coffee and it was just, so nice. A nice slice of normality. By the end of the coffee, I wouldn’t have said I’d thrown off the comparison fear, but I’d at least made dent in it. It was nice to hang. Nice to see their beautiful babes. Nice just to be out and doing things.

It wasn’t an easy morning, but I’m so so pleased we went. 

Join the discussion One Comment

  • Andy H says:

    Elly, good post. Really made me laugh but only because it did n’t turn out the way you’d planned and wished.
    ……and I had this picture of Kai, screaming in protest at the wind, sailing away from you across the park…………………
    …then following up with multiple dumps……………….
    Great to keep trying these things no matter what the hardships. Well done!!
    Faith and Fortitude……
    Andy H

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