Good Friday

We love Good Friday in our house. It is a day that is dear to our hearts.
Not only does it mean hot cross buns for breakfast and fish and chips for tea, but is also the day that Victoria digs deep and donates to the Royal Children's Hospital.

We often refer to the RCH as our 'second home' and are known throughout the hospital as 'frequent flyers'. I can't say that we are proud to have such a strong association with the hospital, because I would much rather we didn't have to spend so much time there. But we do consider ourselves very lucky to include in our team of specialists some of the top doctors in the world.

The thing about the RCH is that despite the fact that there are so many sick children in there, it does feel like a home away from home. The staff do a wonderful job and we are very grateful to them for their part in our journey.

I am looking forward to settling down on the couch in front of the wood heater and watching the TV telecast of the Appeal until I fall asleep (or Braeden wants a feed!).

Comments

Post a Comment

Agree? Disagree? Love to hear your thoughts! Thanks for stopping by!

Popular posts from this blog

Some things just never get easier

I have logged back in to write today as we come to the end of lockdown 3.0. I just saw in my unpublished posts my thoughts about lockdown 1.0. Hmmm. I might publish that one day!  Today's topic feels like something I have written about before. Over the past few weeks, Ryley has been undergoing assessments. These assessments are necessary in order for us to receive adequate funding under the NDIS.  Long story short, Ryley's last NDIS plan has failed to provide the funding he needs in order to participate fully in the things we had planned for his transition out of school.  The whole process has felt a bit messy.  It started with me not being listened to. This is despite my strong, knowledgeable-of-systems-and guidelines voice. No blaming or shaming here. It just is as it is.  However, for those that know me well, know that when you try and 'quieten' my voice, I will only speak louder. Especially when it comes to advocating and speaking for those that can't.  As expec
Keep reading

Blogging 101-how do I do this again?

Image
Sometimes I wander back into this blog and check out a few of my past posts. I read some of the wonderful blogs I used to follow regularly and contemplate writing here again.  So many things have changed in my life over the past few years.  The teenage years are...difficult.  I feel very alone in this raising a teenage boy with WHS thing. There is no one really to answer my questions, and I spend most of my days feeling as though my son hates me. I know he doesn't, but this is tough. Way tougher than I thought it would be.  So here I am.  Tracking my journey again. It may help others.  It may help me. But I feel as though there is so little support out there for parents who have teenagers with WHS...or any other disability for that matter.  I feel compelled to write. So, I will eventually update this blog so it looks a bit fancier and with the times again (ha!). But this is me. Raw. Unedited. Changed.
Keep reading

Defeated...for now

Image
At the moment, I am just surviving. I should have known it was only a matter of time before I fell over again and needed some help to get back up. Stress. Anxiety. Exhaustion. They seem to come hand in hand don't they? And I should have really just taken a moment when I felt the stress building up. I should have just said 'hey, I need a day or two to myself'. But I didn't. And here I am. I am ok by the way. Just in between sick kids, a sick me, work, a zillion extra appointments to somehow squeeze into my already full days...well...it all just became a bit much. Cue: Me in tears sitting in my Managers office. Thank goodness I have a supportive and wonderful workplace. She saw I needed time out and told me to take it. The worst bit of it all is the stupid anxiety that came back. For those that suffer from anxiety (whether it be a sometimes thing like me, or an ongoing disorder), it truly sucks the life out of you. My body just completely went into adre
Keep reading