Hi I’m a mother of two girls who were diagnosed with epilepsy when they were 3 and 5 years old. Talk about a rollercoaster ride that you can’t get off. My oldest daughter has out grown her epilepsy and grown into a determined young lady and a pain in the bum tween and my youngest daughter has had uncontrolled epilepsy for 7 very long long years. She is strong I’m talking kick you in the chest in a tantrum strong and brave/courageous kind of strong too and resilient I’m talking about having seizures every night and getting up going to school the next day type of resilient. Both girls are empathetic and mature in the way they see the world because of Epilepsy they have both experienced and seen things no kid should have to.
I’m married and I haven’t killed him yet GO ME pretty good effort for over twenty years of marriage and I work part-time because working full-time would send me into a mental asylum. I have learnt a hell of a lot from being a parent of children with epilepsy over 7 years eg crying in the gutter is acceptable and scaring teachers for fun is just par for the course. I also feel like I’m doing a PhD with the amount of scholar articles I have read, ask me anything about the temporal and occipital lobes I dare you. My youngest also has developmental coordination disorder that’s a big word for hypotonia and motor planning problems. She also has sensory processing disorder which is a big word for to noisy, too bright, too many labels, too many clothes, not enough pressure, not enough motion and has a learning disorder that’s a little word for a huge struggle in her school day added to everything else she goes through.
I advocate for my daughter on a regular basis, and have built up a tough exterior but I’m a pile of soft caramel inside. I live with stress and anxiety everyday not knowing what is coming next and take good medication because of it. But I am perfectly normal!!! I want to be able to share my thoughts on life as a parent with a child with epilepsy and other special needs. This should be a fun part of the rollercoaster ride xoxo
Ragdoll Mumma Zoe
Hey, my name is Kelly, To the love of my life, who’s stood by me for more than 20 years, I am “the missus”. To my three handsome boys I am mum. Each of our kids has their own monumental battles every day of their lives. I am there to pick them up when they fall and to cheer them on to victory. My two oldest sons are identical twins and have both been diagnosed with dyslexia. One of them has suffered migraines for half of his life and may or may not have epilepsy. (That’s a whole other story!!!) They are the most incredible young men you could meet and show a determination and maturity found well beyond their years.
You see they’ve had to cope with more than their fair share of trauma. Their little brother, my youngest son, has epilepsy. His first major seizures lasted hours and it was his older brothers, who found him cold, blue and face down on the floor. It was them who held their brother’s hand while I called triple zero for help. It was four years ago, that despicable epilepsy was to change our family’s life forever. My youngest son has been diagnosed with occipital epilepsy and eventually/hopefully he will grow out of it. He also has sleep apnoea that requires him to use a CPAP machine at night. And although we requested our son not gain another “label” he has a 20-page occupational therapy report outlining his sensory processing issues. He has mild speech problems. He is allergic to every conceivable grass on Earth, allergic to dust mites, allergic to tree pollens and for good measure allergic to cats!!! Now he’s seeing a plastic surgeon as his mask that reminds him to breathe at night, is slowly deforming his facial bone structure.
He is one tough and super smart cookie. We often joke he’s been here more than once and for someone so tiny he knows too damn much for his own good. It’s my job to put on the brave face and tell them it’s going to be okay and remind them and me that they’re remarkable kids. I am the gaffa tape!!! I will do what’s ever necessary to keep it together – among my more impressive efforts was training to be an ambulance officer so I’d have access to an ambulance and the mobile number of our local doctor (okay yes that does seem a little extreme now) and gaining a “Google” degree in neurology (Ah yes the endless nights researching medical papers – fun times!!!). I look forward to sharing our journey and hopefully it will give a little insight into the world of a Ragdoll Mumma.
Ragdoll Mumma Kelly
The reason behind the name Ragdoll Mummas comes from how we met. Our kids were both diagnosed with Panayiotopoulos syndrome http://en.wikipedia.org/wiki/Panayiotopoulos_syndrome lets just say now that neither of our kids fit this syndrome anymore but it is how our journeys started anyway we found each other online and then started chatting on the phone we live in different states in Oz and help keep each other sane (well that’s debateable). Both our kids have had complex partial status seizures which means a seizure that goes for longer than five minutes. Its freaking scary to see your child have one of these seizures they look like ragdolls and that is where the name came from. We will share more about our kids seizures as time goes along.
If you are looking to find more information about Epilepsy please press the link below to Epilepsy Australia’s website. Epilepsy Australia Website