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 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
Going the Distance Today was a tough day. It was the cross country carnival. My son wanted to give the race a red hot go. He chose to enter the longer event and was full of confidence before he left for school this morning. In fact he was so pumped up about running the long … More Going the distance
“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
I ring Kelly and the phone answers. “Welsh Potato Association how can I help you?” I answer back in my Welsh accent (doesn’t sound like Welsh at all by the way). “Hello I am wanting to speak to someone about entering the Welsh Potato Championships” ” Oh well you have rung the right place”. Most … More When laughter is the best medicine
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
It’s okay sweetie the wolf will go away. You will be okay we just need to get through it and it will go away. It’s okay darling the devil shark is scary and I understand why you are hiding in the tent, how about I sit down with you. I know you can’t talk … More When did it become normal?
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
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 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.
My blog post has been a while in coming and I think may be a little cathartic for me. For something different it’s not about epilepsy, it’s about my dad and the roller coaster of the last six weeks. A month ago I said the words “do I really need to learn any more … More Heartstrings (Are you okay?)
On this bumpy seat of your pants ride there is one thing that can make all the difference. Friendship. The kind of friendship where you can be exactly who you are, say exactly what you think and walk away feeling lighter. I have those kind of friends. I won’t say we lost friends. I … More With a little help from my friends 💜💜
We don’t often hear a fathers viewpoint. Thank you Edi Winkler for sharing a piece of your heart. Having had no real prior experience with the impact Epilepsy has to your life, when my daughter first started having seizures I spent a long time in denial and hope. Denial that things were bad, … More Adrift on the Tempest Sea
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
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
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
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
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
Many of you may have read this before or it will be your first time reading. Either way I hope it helps you know that Holland is okay and there are some absolutely amazing people you will meet in Holland. It’s a piece of writing that really says it all about coming to terms … More Welcome to Holland Part 1 and 2
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”
Originally posted on 0ne Word At A Time:
1 in 66 children have autism (CDC 2014 data) 1 in 20 children have a Sensory Processing Disorder (SPD Foundation, 2010) 1 in 6 children experience sensory symptoms strong enough to affect everyday life functions (Kathleen Morris, MS CCC-SLP 2014) A quick Google search will provide you…
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…
Originally posted on Dac's Mommy:
Have you ever stuck your foot in your mouth? Wished you could take back the words as soon as they tripped from your lips? Your brain seemed to have gone haywire and you mentally cringe because you know you have said the wrong thing. Can you get a rewind…
I have a travel buddy heading on a similar route. We share the highs when our kids manage a remarkable feat that to a ‘perfectly normal’ (PN) person is ordinary. We share the lows that break our hearts and share the mental gaffa tape that helps stick us back together to continue on our way. … More Surviving the journey
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)
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
Originally posted on Dac's Mommy:
Life is a lot like a recipe. You have to have the right ingredients or it can be a total disaster right? When you parent a child whose needs are many, you strive to find the right balance. You make mistakes but you keep right on weighing, measuring, mixing…
Originally posted on HypermobileGuy:
So yesterday I received my warrior beads. This is a project started by Chris who is on a website called http://www.1boy4change.org Unlike some projects this one is open to any adult or child with any type of condition or illness. It’s away of documenting your medical journey so that you…
Why is this happening to my child? Why can’t they get a break? Will this shit storm ever end? If you have a child with epilepsy you’ve probably asked yourself these very questions and many more. As Ragdoll Mummas our list of questions is long. Some of our questions can’t be answered, but we have … More Ragdoll Mummas share epilepsy home truths
The spoon was being shaken vigorously and the cream dropped off into the bowl. She grabbed the egg and cracked it into another bowl and whisked and then poured and swore under her breath as the whole egg dropped in and sent the scale numbers flying up. She felt like crying but she knew … More Never Ever Give Up
