She has sat by by my side day in and day out and watched me get poked, cut, poisoned and sedated with drugs and she can do nothing more than wipe the tears away, hold my hands, hug and pray that something will work.
Mum lives on little sleep and spend countless hours in small, cramped hospital rooms and bedrooms sleeping on chairs with the stress of seeing me go through countless seizures and seeing the condition slowly wearing me down and appearing in desperate eyes . When I finally sleep, she is searching, asking, why us? preying to find help from any source, from any person or place that offers the tiniest shred of hope – finding out that private care is too expensive is a desperate blow.
There are other Mother’s like mine who go through the same strains and they have to also deal with the life around them going on without them being able to be present.
These Mothers… These Epilepsy warriors deserve a very special recognition to know how incredible they are and hope that one day you get that news you need today to help you to continue strong on your journey for a cure ! ♥ ♥
I asked my mum to tell me a bit about her point of view: this is what she told me…
When going up or down stairs – being in front to catch her.
Having to have guard rails on the bed so when she has a seizure at night she doesn’t fall and hit her head on the floor or cabinet.
When she’s crafting any scissors, needles, pins need to be put down if i go out the room for even a second. We have a buzzer system so that if I’m in another room Jo can alert me if she feels a seizure coming on…. or the buzzer activated when it hits the floor. It has about 80% success rate
When we are out we link arms so I can prevent injury to a certain degree if she falls outside on the pavement.
SUDEP (sudden unexpected death in epilepsy patients) is a factor and we know it. Jo has all the risk factors and so keeping her safe is my priority, she’s my daughter and I love her so much.
I live with the knowledge that every seizure may end in ITU (intensive care unit)… or worse.
The mental strain and physical strength needed is great.
I know very few people who can cope with the the physical and mental strain of Jo having a seizure. They say its ok and they can cope but when they see Jo at her worst many Freek out not knowing / not remembering what to do and stand mouth open and freeze. – Including her father ! People don’t realise that every day Jo is in pain. to watch your daughter suffer day in day out is an emotional strain that no -one (unless they are going through it) understands.
Life is a mixture of pain, seizures, emotion, depression, but also of the great courage and strength I see Jo going through what she does and I feel I have the easy bit sometimes. I keep strong for her but she is the strong one coping with the physical and mental pain day after day. In the end we work together we both need each other. I will never underestimate the strength that is inside that daughter of mine though.