For the past two years I’ve been planning on getting a new car. When I found out I was pregnant with second child I knew I needed a bigger car. A wagon. I decided I definitely wanted a Subaru Outback. Essentially it’s a SUV wagon. Practical, large, yet feeling a bit luxurious.

After Luca was born, we thought we could make do with my smaller car while we finished off our house and saved more money.

Then, that dreaded 10 month semi-diagnosis for Luca of having a Mitochondrial Disease came. Reading his prognosis. We had to start thinking “do we need a bigger car, if we are going to lose our second child?” Or “we definitely need a bigger car to carry his wheelchairs or equipment around”. It’s a big conundrum!

(At this stage, we’ve gone in between! We’re just waiting for the new Renault Megane Wagon to be launched. Has extra room at back for bikes/chair- but still relatively compact inside. )

It’s this practical & realist way we think when we plan things in the future. I’ve mentioned that I try not to think of the future much- but when I do it’s for GOOD things- but then I also have think about “but what if Luca isn’t here”. Limboland.

We have our first overseas holiday with our 4 year old coming up. Given Luca’s condition- how a cold one day can turn into a hospital visit the next- we won’t ever be taking him overseas. It’s not fair on him or us if something was to go wrong in a different country. And this is where Very Special Kids (VSK) comes into the mix. They allow us to keep living our life.

In order to go overseas, our first step is to book in Luca to have his own holiday at Very Special Kids. They need about 6 months in advance to book him in over an extended period. (Often you need to work with them to find mutually agreed dates.) Both my parents and inlaws will be staying at the VSK family accommodation on site to give Luca some daily family love. (Despite him getting so much love from staff at VSK)

Once VSK is booked, then we can go ahead and book our holiday. And just knowing a holiday is on the horizon certainly puts a pep in every ones step.

It’s so bloody great mentally… knowing I have something fabulous to look forward to. Something new to talk about with friends!

Although, it might not all go to plan. Who knows how healthy Luca will be! My beautiful friends who I met through the Australian Mitochondrial Disease Foundation are currently in hospital with their child. They were due to fly overseas tomorrow. Fingers crossed that they should be discharged today and still get to take their child to VSK and then fly out the next day. Everybody diserves a holiday to recharge their batteries. And parents who care for their special needs kids, as their full time job, definitely deserve respite without guilt or outside judgement.