Moving Forward 

Today I cried in the shower, I let the tears stream down my face and I let the emotions I had been holding onto for way to long come flooding out. The tension release is not what you would expect, it’s like a rubber band that bounces back. It doesn’t get rid of the hurt, … More Moving Forward 

The Other Child

The Other Child The side stepped child as you go to help your other child with a seizure. The child who wants to tell you about their day but your other child is crying in pain. The child who misses out on things an average child doesn’t.   Siblings of children with special needs are … More The Other Child

Fine in our own way

   “I’m/we’re fine”. “I’m/we’re all good”. The two phrases that quickly follow any question of “how are you?” The truth is, we are not really fine, we are not really all that good in the true sense of the words. Living the rollercoaster of two children with uncontrolled epilepsy is never going to be fine … More Fine in our own way

Sleeping Over

Sleeping Over Our little man is growing up. He celebrated his tenth birthday in November and during December and January we withdrew his epilepsy medication. It’s always a tough decision. I constantly question whether we’ve done the right thing. The decision came after we had increased his anti-seizure meds, then we saw a steady decline … More Sleeping Over

Runaway Epilepsy

It has been one of those weeks when you think nothing else could possibly go wrong and then it does. I seem to have a lot of weeks like this, but this week has been a real doozey! The week started with such promise. It was a perfectly normal beginning. I was busy with the … More Runaway Epilepsy

The Whole Child

   Lizzy is currently in a really good place and I put a lot of it down to viewing her as a whole child. I have put together a graph to show how uncontrolled epilepsy can impact so many areas of your child’s life. Sometimes we just focus on the seizures and forget that there … More The Whole Child

I am fine.

I take a deep breath and pause for a moment. Holy crap I think I am about to start crying and assume the foetal position in the dairy aisle of the supermarket. Okay more deep breaths, I’ve got this and I am going to be okay. Oh crap, nope that’s not working. I still want … More I am fine.

Big Girl Pants

Pants are over rated, in particular “big girl pants”. Had a bad day, time to put your “big girl pants” on. Some days big girl pants just aren’t going to cut it. Some days running around pantless is exactly what you need to do. I encourage screaming incoherently so that others understand why you are … More Big Girl Pants

Return to sender

  Today I packed up the seizure alert mat that I borrowed from our local epilepsy association. While packing it up I’ve decided to also return all of my son’s epilepsy. You see I don’t want it anymore and neither does he. I can’t find the epilepsy receipt, but it’s definitely a faulty product so … More Return to sender

Please Don’t Judge

I have two beautiful children. They are the sunshine in my life. They make me laugh with their humour, quick wit and love for puns. They make me cry when they thoughtfully draw a beautiful picture just for me or leave an I love you note. They make my heart fill with pride when they … More Please Don’t Judge

Fathers Day

   If you are a father or a significant male in a child’s life. Father’s Day is a time to recognise the important role that you play. If the child you love has Epilepsy your shoulders are weighed down even more. I wanted to say thank you to all the dads. For all the things … More Fathers Day

Ragdoll Mummas share epilepsy home truths – Part 2

What tips do you have for kids getting an EEG and other invasive tests? Ragdoll Mumma Kelly: The first time my son had an EEG he was a hospital inpatient after suffering status seizures. He was in an isolation room because medical staff had been unable to establish why a healthy kid was suddenly having big … More Ragdoll Mummas share epilepsy home truths – Part 2

Dear Teacher/Principal/Counsellor “Education Leads To Awareness”

   Dear Teacher/Principal/Counsellor   I am writing to you today to express my thoughts about my child with Uncontrolled Epilepsy and hopefully give you some insight into her.    Firstly I would like to say a large majority of you do an amazing job. I don’t think I would cope with looking after 30 minions … More Dear Teacher/Principal/Counsellor “Education Leads To Awareness”

Breathing Lessons

Originally posted on Dac's Mommy:
I have finally learned to breathe. It took a long time to get here. I started holding my breath as a small child when something hurt me. It somehow carried me through the pain. For instance if i scraped my knee and it bled, i would hold my breath…

In her own time and in her own way (With a lot of hard work)

  When Lizzy was diagnosed with epilepsy we were in a world of stress and grief as we came to terms with the fact that our perfectly healthy child was no longer perfectly healthy. Our world revolved around seizures, medications, lack of sleep and repeat. We were dealing with behaviours, tiredness and a child who … More In her own time and in her own way (With a lot of hard work)

A story of unconditional love and sisterhood

   Originally posted on Bella The BravePCDH19. Thank you Helen for letting us share a glimpse into your life. Please check out her Facebook page. https://www.facebook.com/pages/Bella-The-BravePCDH19-epilepsy/1602930993263473 My child is not special  …..or is she? I am the proud mother of two beautiful girls.  Both have a button nose, both have piercing blue eyes. Amazing eyes … More A story of unconditional love and sisterhood