November is Epilepsy Awareness Month. Epilepsy is a big part of our family life. I have 3 children, Florence who is 5 months old, a step daughter who is 5 and Ethan who is 8.
Ethan our eldest has epilepsy. Not just any epilepsy, hard to control epilepsy.
Ethan had his first seizure when he was just four days old. It was the most terrifying moment of my life. I can still picture every second of those 3 minutes. Holding my tiny baby and him jerking and staring at me will haunt me forever. This was just the start of our 8-year journey so far.
Epilepsy controls our life. It never stops for our poor son. We were told by our epilepsy nurse that “children with epilepsy are always in a state of epilepsy.
They are either having a seizure, building up to a seizure or recovering from a seizure”. We have found this to be so true!
We don’t ever know when a seizure will appear and we can never predict where we will be when it happens.
Most of the time people won’t even recognise Ethan is having a seizure as he doesn’t present with his seizures like you would think.
Ethan’s seizures present in the following ways; increased heart rate with gasping for air and arm jerking, staring into space (absent seizure), crying with increased heart rate and eye flickers.
When you know Ethan well you can tell when he’s having a seizure.
We constantly have to keep an eye on him as it’s important to help get the seizure under control as soon as possible. Ethan has a VNS is place which helps with seizure control and we also use midazolam which is a rescue med.
As a family we spend lots of time in hospital. It’s like a day out for us! Dakota even got dressed up as wonder woman! We are very used to this but each time is still hard and emotionally draining on us all.
Never knowing whether we will leave the hospital with Ethan is a thought that never leaves you.
We don’t let epilepsy stop our lives though even though it controls it! We still have many adventures with Ethan, although some of those plans often have to be cancelled or changed due to a seizure. We live life fully as we know just how precious having Ethan is.
Unfortunately, one seizure could take him and I do not want to live with any regrets that we didn’t give him a life full of love and fun.