A rare life – day 2

I love someone rareWelcome to day 2 of my 25 day challenge to give you a glipse into life with a child with a rare (in this case undiagnosed) disease. For those of you who weren’t paying attention yesterday, I’m going to try to write every day up to 29 February, which is World Rare Disease Day.

I had planned on writing about our Friday routine – which always makes me smile. However, events again unexpectedly presented themselves and were just too good to resist writing about.

Today was the fifth consecutive day of Miss Z attending school. She began Prep (aka Kindergarten or Reception in other parts of the world) last week, which was only a three-day week, so this week was her first full week of school. Even though she became increasingly tired as the week wore on, she did really well.

So well, in fact, that at the school assembly today she was named Student of the Week!

Of course, being Miss Z, she had to do things her way. She was awarded Student of the Week for adapting to the transition of attending full-time school so well. And she slept through assembly and the awarding of her certificate. Her teacher said that at one point she cracked one eye open, decided she didn’t want to get involved, and closed her eyes again! At any rate, the photos of my sleeping daughter receiving a reward are hilarious and QB and I are hugely proud of her.

Everyone in our house has been worn out by the first full week of school. Even I’m struggling to keep my eyes open as I write and it isn’t even 10pm on a Friday night here! I knew the girls would be tired after school, so we watched movies all afternoon. They were both happy enough, but Vegemite later cracked completely when trying to do her piano practice. Irritation at not being able to play a piece turned into frustration, anger and then there were tears… which eventually turned into wails of anguish. All over piano practice.

I eventually cut my losses and stuck Vegemite in the shower and then sent her straight to bed. She cried a bit because I was paying more attention to Miss Z (who I’d just taken out of the bath) and took “too long” to put all of Z’s bath things away before going to have a cuddle with her.

Which made me thing: everyone always assumes it is Miss Z who is the difficult child, but that is far from the case. In fact, Vegemite is quite often the one who is drives me around the bend. Miss Z is actually quite happy and easy – so long as you follow her rules.


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