Steph attended our Trearddur Bay coffee and chat group and it changed her life. Find a local Epilepsy Action group near you this January.
I’m the mother of a little boy aged 2 who has had epilepsy since he was 10 months old.
I hadn’t been able to talk about my son’s epilepsy with anyone other than my husband, or at least when I did they didn’t understand or I got too emotional to speak. No one really knows what you are going through unless they’ve been through it.
A friend of a friend told me about the group after it had started up. When I arrived for my first meeting I didn’t know anyone. Jan (Epilepsy Action South Wales manager) put me at ease and introduced me to the group. I burst into tears when I was asked what my relationship was with epilepsy. Now we all take it in turns to have a cry! Just being able to talk about my situation was invaluable for me – just knowing I could express myself and talk to others about my concerns and worries without being judged. The others understood, had experience and could empathise and advise me.
Jan has such a lot of knowledge and has the contacts I’ve needed to get additional help. I’ve had really good support and advice from her. My little boy had a nocturnal seizure when he was 20 months old. I was petrified of putting him back to bed. I spoke with Jan and she enabled me to talk to the right agencies and got the ball rolling. Within a week I got a special mat and alarm supplied for my son’s bed, this alerts us if he has a seizure in bed. It’s vital. With him being so tiny there’s not much noise to wake us at night when he has a seizure.
I also get advice from other group members, people who have been through this already. We all help each other.
My son is on medication twice a day and has been since he was 12 months old. He went 5 months seizure free (the longest he’s ever gone without a seizure) until recently when he had a couple of seizures within a month. His medication has now been increased so he will hopefully be stable again. I'm just worried about potential side effects.
There’s a much needed social aspect to our group as well, with a couple of nights out a year. We’ve become a group of friends who message and chat outside of the group.
We’re all mums, and I’m the youngest mum. I don’t feel any different, if anything I feel I benefit more as I can draw upon the experience of the others and how they managed at different stages of their children’s development. We just all happen to be mums of children with epilepsy, and it’s really worked out well.
The group has changed my life, honestly, it really has! It’s therapeutic and I couldn’t be without that support now.