Purple day. Epilepsy awareness day.

Today is purple day for epilepsy. 

Regular followers of my blog will know how the ketogenic diet has been our miracle. But I will never lose sight that it might stop working and the horror that is epilepsy. 

My "on this day" on social media is a reminder as I read of posts from years gone by. This one from two years ago today says a lot: 

All morning I have been spamming your feed with posts about epilepsy and purple day. If it helps just one more person understand it a bit more, then its good.

This post is a personal account of how it effects M. The seizure monster as it is un-affectionately known decided in 2007 (maybe before but undiagnosed) to plant its evil self in dudes brain. It began with what are known as absence seizures.... look like daydreams. And then one night he had his first tonic clonic. this is the one most people would associate with epilepsy...the one where the person shakes amongst other horrible things. This prompted further testing and eventual diagnosis of a seizure condition. Originally thought to be caused by a neurodegenaritive condition but now believed to be due to a mix of all his diagnosis. Thus began the rollercoaster of medicines to try and get his seizures in control. OMG, how frustrating is that process. Every new med suggestion gives you hope... till the seizure monster just laughs at it and continues to attack my beautiful boy. His seizure condition has progressed and is still uncontrolled. He has nocturnal tonic clonics. daily absences. He also has complex partials...these can be where just one arm has involuntary movements, or a lip quiver, or eyes going off in their own direction..can manifest in any given way. he has drop seizures. Just drops to the floor. he has atonic... he can go floppy and unconscious without warning and prolonged.  Recently he has added gelastic seizures to the mix. these are extremes of laughter or crying or both. We are about out of options for drugs for seizure control and are considering VNS or ketogenic diet.

Heartbreaking. 

Last year I had to resuscitate him.due to a seizure.... no mother should ever have to do that to their own child. Doesnt bear thinking about what might have happened if I hadn't had some first aid training. Epilepsy can kill. I very nearly saw this first hand.

Epilepsy means carrying around of controlled drugs, being prepared for anything at any time... dreading going into your childs room of a morning if they're quiet. 

I never get used to his seizures... each one rips a piece of my heart away... each one takes a little bit more of my boy away.

I urge everyone to make yourself aware of seizures and epilepsy and first aid... you may just save someone's life... someone's son.

#purpleday #epilepsyawareness 

Feel free to share...all awareness is good.

M's shoes

M's shoes. 

I see your tears fall silently, mum. I know how I am sometimes, makes you sad. It makes me sad too but I don't always know how to control it. Frustration fills my bones. I wish I could speak in the complexities of your language. I do try in other ways, but the expression sometimes manifests through hurting you physically. When I'm with others I sometimes feel like a pressure cooker. The world is full of noise. Sometimes noise makes me laugh but sometimes that noise fills me with discord. I become afraid. Pressure builds up. When in your company, I feel safe. Safe to pop. I do pop. A cuddle should comfort me but I feel restrained. I do try to calm myself. My washing machine spins. My head in tandem with it, calming me. I appreciate how you feed my need for same and routine, indulging my obsessions. Obsessions that stimulate and speak safety. I love how we laugh at the silliest of things. I know you try to understand my every move, thought and feeling. I know if you could walk in my shoes and make it right, you would.