That’s a wrap!

We have now dived into the school holidays... well more like a side-way shuffle into bed on a Friday night at 7.30pm after watching eps of Peppa on the iPad!  Mikey D has had a great term 2, and his report card was just perfect!  And by perfect, I mean no crap about what he… Continue reading That’s a wrap!

The elephant in the room.

At times it can be hard for me to keep smiling.  Oh yes, I'm very good at slapping on a fake smile - aren't we all?  It's easy in this fast pace world to fake it, til we make it, but that's not really healthy for our mental health in the long run, is it?  Sooner… Continue reading The elephant in the room.

Today MikeyD got verified!

Today MikeyD got verified at his Special School! What does that even mean?  For the first few months, MikeyD has undergone assessments at school for his cognitive abilities as well as physical abilities. All kids that enter the school need to be verified for ID (intellectual disability).  As MikeyD's physical disability goes hand in hand… Continue reading Today MikeyD got verified!

Mikey D’s Update on Prep Life!

We have had a kicking start to the school year and now we find ourselves in Term 2! Mikey has a great class with 4 other little fellas, and 3 incredible teachers.  1 Teacher and 2 Teacher Aides makes sure that all the kids get the assistance they need to thrive in school. This term,… Continue reading Mikey D’s Update on Prep Life!

Another life lesson learned the hard way – going off track!

This week we have started the process of pre-surgery testing.  It is overwhelming, mind blowing and scary.  Despite the fact we have been gearing ourselves up for this, doesn't make it any easier! I was taken a bit off guard when my heart broke a little bit the other day as I watched my eldest… Continue reading Another life lesson learned the hard way – going off track!

What are the chances of lightning striking twice?

What are the chances, that you will find someone who is walking down a very similar path to you, at the exact same time as you are?  Facing fears, deliberating on issues that to other people, don't even enter their minds as the rarity of the situation is so extreme that you even struggle to… Continue reading What are the chances of lightning striking twice?

Being Grateful is a Daily Practice!

Don't worry, it's not easy to be grateful all of the time.  It takes time and practice.  In fact, it is only human if at times we look at the glass and see it as half empty.  It is difficult in this fast pace world to think that we need nothing more to be bigger, do… Continue reading Being Grateful is a Daily Practice!

Soldier Down

Today in Australia it is ANZAC Day.  April 25th is a national day of remembrance whereby we remember the men and women who fought for this great country in honour of the freedom we have today.  We thank them for the country we live in - one where we have options that wouldn't be possible,… Continue reading Soldier Down

It’s all sunshine and sandcastles over here! The comment from a stranger that made me look at things differently.

People say - think positively, and it will all work out.  If only it were that simple!  But yes, I try and take opportunities and run with them, and at times I try and ignore the ignorant comments (but again, that's easier said than done).  I only have to jump into a forum and see… Continue reading It’s all sunshine and sandcastles over here! The comment from a stranger that made me look at things differently.

Days like these

Days like these, like the one pictured here, is a sublime day.  Full of fun, laughter and not a care in the world.  It is so refreshing when it's an 'easy' day for Mikey. When it's an easy day for Mikey, it's an easy day for the family. On this day, it was a beautiful… Continue reading Days like these

Time… but not as you know it

First published by Bryce Wilton on 7 April 2017  It’s “TIME” Daddy but not as you know it. Me Hey Mike-D you want to help Dad fix the shelf? Of course he does the question is purely rhetorical. Let’s go into the Garage and get the tools. Mikey Mikey no put the fishing rod down.… Continue reading Time… but not as you know it

Giddee-up!

This term through our local Riding for the Disabled school, Mr Danger has been very fortunate to be asked to be part of the InStep Program. It's the therapy used for Hippotherapy, the training he does with Snip, his horse, every Saturday morning. We have found that most things can't keep Mikey away from his horse… Continue reading Giddee-up!

Disability and Your Response

I find that we have to be so careful of what we say in fear of offending someone, that we either say too much (and we don't hear the other person) or nothing at all.  Both to me, can be equally damaging, depending on the circumstances.  The only way we can possibly learn from one… Continue reading Disability and Your Response

Team HHE

Never think that just a few people can't make change.... they can! Through sharing our story, we now have a small community of Support for our children living with HHE Syndrome. Thankyou @sourcekidsmagazine for raising the awareness 💜 Head over to Source Kids for latest updates 👍

Why Rare Disease Day is so important to me!

On the last day of February each year, it is Rare Disease Day.  I never knew of this day before 2011.  I stumbled upon it, when our family dynamic changed, and our son was diagnosed with a rare disease - an intractable form of epilepsy - HHE Syndrome. Over the past 3 years or so, we… Continue reading Why Rare Disease Day is so important to me!

Are you ready…. to do the Bus Stop?! **This post is dedicated to Poppy Pring – the Bus Driver!

My dad, Danger's Poppy, was many things to many people.  One of those, was a bus driver to students - International students, high school and primary school students.  He drove from the Gold Coast to Brisbane, and all the surrounding areas.  He turned up the kids' music when they asked 'hey Mr Bus Driver, turn… Continue reading Are you ready…. to do the Bus Stop?! **This post is dedicated to Poppy Pring – the Bus Driver!

Please sign the petition – Fair for Rare!

Please sign this petition - it won't take more than 5 seconds of your time and it's so important to support this project. Sign Petition Here! WHY? There is no National Rare Disease Plan in Australia.  It's really important we get one for little tackers like Mikey, who I blog about on our daily joys, challenges and… Continue reading Please sign the petition – Fair for Rare!

When the problem is larger than life, but you can’t see it.

I don't mean to be a downer on this post but I do think it needs to be mentioned that when you are thrown into this world of Special Needs Parenting (and by the way, the term Special Needs is on the way out - apparently the PC police are onto it... but that's for… Continue reading When the problem is larger than life, but you can’t see it.