Category: Uncategorized

Having Fun

Last night, the boys and I went out to dinner and then went to see The Greatest Showman at the movies. We bought our tickets at the last minute, which meant we couldn’t sit together, but that didn’t seem to matter. We all had a lovely evening.

On the way home, we realised that we’ve forgotten how to have fun together!

This may seem like a strange thing, however, during 2017 especially, we were all in survival mode, just doing what we had to do to get through the day. There was very little we did together just to have fun and enjoy life.

Last night, we were talking and realised that now that both boys are doing quite well, there needs to be a shift in our thinking that we can actually do things!

We used to do things during the school holiday like go to the Museum and Scienceworks, go to the movies, go and explore the city, and anything else that we felt like doing. We would also do things like go to dinner regularly, go to movies, and hang out together. We haven’t been doing very much of this at all.

So, I’m adding a goal, or even a word for the year. That is Fun.

I would like to build in some fun for the year, and learn how to have fun as a family once more.

One challenge I’m going to set for the boys is to come up with some ideas on things we can do together, both at home and going out. I’m looking forward to reading their list.

This is the trailer for the movie we saw last night, highly recommended:

Merry Christmas – 2017

December 25, 2017


Comments Off on Merry Christmas – 2017


We would like to wish you a very Merry Christmas and a Happy New Year.

Thank you to everyone who has followed our journey this year, especially during 2017, which was a tough year for all of us. We are looking forward to a fresh start in 2018, and will continue sharing our journey on this blog.

Today will be spent with family and friends celebrating the birth of Jesus. The image above is a knitted nativity set that my mother made for us last year.

We hope you have a lovely day.

Work and sick kids – part 2

November 15, 2017


Comments Off on Work and sick kids – part 2

When you’re working and have chronically ill kids, managing work is only one part of the equation. There is also managing the house, child care, appointments and more!

It’s hard not to feel like you have to do everything!

The problem with doing everything means that you’re more likely to fall apart and feel even worse about everything.

Here are some things that I’m learning (and I’m still learning as I often forget!):

  • Accept help – there will be people who want to help and support you. Accept their help.
  • Be specific – when accepting help, be specific about what help is useful. Do you need someone to clean the bathroom or go to the supermarket, or sit with the kids for a while? Let people know what it is that you need.
  • Be flexible – sometimes people won’t do things quite the way you will do things. Let them help. In the long run, it will reduce your stress levels.
  • What do YOU need to do – work out what are the things you need to do as opposed to what needs to be done. For example, there are certain appointments I have to attend as a parent/guardian needs to be there, but there are other appointments that other people can take the kids to.
  • Quick and Easy – for meals, I go for the quick and easy option. Sometimes this means takeaway, sometimes it’s eggs on toast for dinner. We do what we need to do to get through the day.
  • Pay for help – hire a cleaner, a nanny, whatever you need to help. If there are things that are getting to you, sometimes it’s better to pay for help rather than let it get to you.

Life is a juggle, but you don’t have to manage on your own…

What would you add to this list?

Work and sick kids

November 14, 2017


Comments Off on Work and sick kids

I’m a single mum. When my younger boy turned 7, I was told I had to go to work. So I did.

I was incredibly lucky to find a part time job around school hours. It was still hard fitting in work, life, kids, after school activities, housework, and so on.

When you add in sick kids, life gets even more complicated. There are doctors visits, therapy appointments, medication, school appointments, and so on. Fitting all this at work can be a challenge.

I am incredibly lucky in my workplace as I work with my parents, so probably have more flexibility and understanding than many workplaces. That doesn’t mean to say that you can’t ask for flexibility and understanding from your workplace.

Here are a few things I’ve learned about working around chronically ill kids.

  • Communication – tell your boss what is going on as early as possible. Even if you are waiting for a diagnosis, talk to your boss.
  • Flexible hours – it’s not possible in all workplaces, but see if you can negotiate flexible work hours. If your appointments are set through the hospital, it’s not always possible to predict when they’ll be. If it’s easy to swap days around appointments, it will make things easier than having to take a leave day!
  • Flexitime – see if it’s possible to work flexi time. This means that instead of being paid overtime, you take time off in lieu. Again, this may not be possible in all workplaces, but it’s worth asking the question.
  • Work remotely – it may be possible to put things in place so you can work from home, or from the hospital. My workplace is starting to set this up, and it was great to be able to log into the hospital wi-fi and do some tasks that had to be done today.
  • Reduce your hours – if you are struggling to keep working and care for your kids, see if you can negotiate reduced hours, even in the short term, and increase them again as life settles down.
  • Leave entitlements – check what leave entitlements you have. The most common are Annual Leave and Sick/Carer Leave, however your award may have others. See what leave you have and what you need to take.

As a single parent, I don’t have a partner to share the load. Even if you have a partner, see if you can both negotiate changed work conditions so you can share the load. It doesn’t always have to be Mum who attends the appointments or stay home with a sick kid.

If you are in Australia, the Fair Work Australia will have more information on leave and entitlements. Go to

Do you have any more tips I could add to this list?

Medical folders

October 22, 2017


Comments Off on Medical folders

Boys medical records folders

I have a folder for each boy that has copies of any medical reports we have received in them. Until last night, they were a jumbled mess as I’d put anything I found in them!

Last night, I decided to sort them out. They are now in order by year, separated by dividers. This was a harder task than I had thought…

In it are reports from ED when Zac was 6 and he had a fatigue-like medical condition and we didn’t know what it was. There are reports from Nat’s early ED visits with leg pain (before CRPS). There are reports from schools, blood test results, and more. Each piece of paper I looked at brought back memories and feelings that I had thought were long buried.

Having the folders organised, it also means that if I find any other reports, it will be easy to put them in their correct places.

It may seem strange that I’ve kept the reports going back to 2010, however having kids with chronic illness means that doctors want their entire medical history and they ask dates and medications. Having these folders means that I have this information at my fingertips.

I really wanted this done before Nat’s next inpatient stay tomorrow so that we could easily find reports we needed if we need them. It’s also nice to know that the folders are finally organised, it’s been on my list for ages!