I genuinely am feeling pretty good at the moment. Luca is doing relatively well, despite not being super happy. He’s definitely sitting up on his own a lot. And then sometimes falling flat on his face- but we’re still all very excited for him. We try to get him to play in his room more for comfy carpet faceplants. We build a cushion fortress in the lounge area, where we have floor boards.

Husband asked where we put the playpen from when Lili was younger. I told him I sold it on eBay not long after getting a semi-diagnosis for Luca. That feeling of “what’s the point” of keeping things when they’d only remind of the things Luca can’t or won’t do…. but now he bloody can!

On Thursday Luca had a hearing test. He had one last year too. A common symptom of a Mitochondrial Disease is loss of hearing and/or eye sight. Last year his hearing was perfect. This year, I was definitely more concerned. Lili screams right next to him, he doesn’t blink. I call his name, he doesn’t look. It doesn’t change anything really- I’d just touch him more and get in his face more if he did lose his hearing. But for now, his hearing is fine. However, he does not react to sounds that don’t interest him…. YOU MEAN ME??? Of the 6+ sounds the tester made, he only reacted to the drum. Looks like I’ll be a new drummer mama?! No.

So everything is pretty positive. I’m positive. We’re happy. I’m flicking through the paper, sport section. Oh there’s beautiful Subzero- former champion racehorse. I read the story.  The horse is visiting a boy at Very Special Kids (respite and hospice in Melbourne for children with terminal or life limiting conditions) Subzero knows the boy is not well, so goes in a little closer to the boy to allow him to pat him. Hours later, the boy, Curtis Dyt, 5, died. Cue the tears.

Very Special Kids is one of the wonderful organisations that support our family. The staff and facilities are amazing. It’s all about making the kids happy and comfortable. It’s about helping recharge the parent’s batteries. It’s about experiences for kids that they might not get to do any other time.

I’m so glad Curtis Dyt had that special time with Subzero. I’m so happy for his parents who can take some comfort knowing their son died with a happy experience fresh in his mind.

I have no idea what the future holds for Luca. Which is why I try not to think too far ahead. However, when I read something like this story, about a sick boy at Very Special Kids, I can’t help but relate and think about us losing him. Cue the tears.