Last year when Mikaere was well, we took him to Tenbury Wells to introduce him to his Great Grandad. Since a whole year has gone by (!) and we were enjoying another relatively calm period, we went up again this year. It was amazing – I adore his Great Grandad (he’s great – he even tried to teach me to read music this year) and it was nice to feel like we could take Mikaere on a road trip. That we could leave home for a bit of a break and not be on edge the whole time, waiting for the untoward.
I just want to take a minute and say how huge travelling is for us. Before Mikaere both Sam and I were super into seeing the world. We had huge aspirations for travelling with our little guy and that was all put on hold when we found out about NKH. Taking him home to NZ is completely out of the question. Something like taking a road trip four hours north of London felt like a huge giant mission. We went last year I prepped like anything. We had all the emergency kit, I knew which hospital was closest to where we were staying, I knew who to talk to in the paediatric emergency department and I knew who to call if there was non-emergency blip. I did the research. We had the emergency gear and I was constantly waiting for the emergency to happen. Long story short, it didn’t.
This year, because Mikaere’s been so well I didn’t prep nearly as much. Sure, we had all the kit and our car was packed to the brim like a tetris puzzle (SO MUCH GEAR) but it was a much more relaxed trip. Mikaere’s bigger and I guess we’ve got a whole year of experience under our belts.
Even better was that the trip was delightfully uneventful. There were walks and piano playing and lingering meals and a lot of fantastic family time. Our little guy is so loved, it’s really reassuring to see so many people love him so openly. I also feel like four generations is a pretty special thing, so I’m glad we went. It was also really nice to have the extra arms, which meant that both Sam and I got a chance to sit down together (!) and drink hot beverages when they’re still hot (!) and generally relax a little bit.
I often wonder how much of the complexity and stress of travelling is just down to my fears about the worst case scenario, and I wonder how much of that I’ve been primed for by our medical team and labels like ‘terminal’ and ‘acute deterioration.’ True, I’d rather have all the kit and plans and not need them rather than the opposite, but I think my mindset around travelling and being away from the safety of home has been sculpted by the fears of our medical team.
The truth is going to Tenbury Wells was positively delightful. I’m glad we went. I’m hoping that the more practiced we are at leaving home, that one day we’ll eventually be able to holiday somewhere that is outside the safety of family.
