I’m very honoured to say that two of the people closest to me have agreed to share their stories as part of Epilepsy Awareness week. They are two very different stories and today I start with my sister Stephanie.
Me and Stetty (As I call her, or Stet or Net)had your usual relationship growing up, we shared a room until I left home. We argued, made up, borrowed clothes and generally bickered like sisters do. Then something amazing happened the little sister who drove me mad became my best friend. I was 7 when diagnosed with epilepsy which made my little (and only sister) just four years old. Stet has never known me without epilepsy really and it has been something that I have thought about more over the last year or so. Siblings have a complex relationship and it fascinates me, they can be polls apart in personality yet the strongest bonds in a family. We are no exception. I feel our bond would always have been strong, we became friends as well as sisters during the 7 years that my epilepsy was non-existent. However there is no denying that my having epilepsy has strengthened our relationship, she has lived every second of this with me and is possibly the best person to give you an insight into my epilepsy. She is my biggest defender and is quick to put people straight to argue my corner when she feels it’s needed, she is also the first to put me right when I am not doing as I am told. All of this led to the fact that when Noah was born she was my birthing partner along side Chris, there is no one in the world I would rather have had, I didn’t need to talk she knew what I was thinking (we have that strange connection). So here are a few questions I put to Stet and her answers.
Can you remember Mum and Dad telling you I had epilepsy?
No. I don't remember mum and dad ever telling me you had epilepsy.
Can you remember the first time you saw me have a seizure?
As a child there is only 1 that really sticks out in my head. I think I was about 4 and you was 7, we had just had our bath and mum went to get something. Next thing you was having a seizure and I remember calling mum but that was it.
How do you feel it affected your childhood?
I don't think it affected my childhood. As I said there is only one seizure that really stood out.
What has been the scariest moment for you?
The scariest moment for me was when you were pregnant and I got a phone call to say you had had a seizure at a train station and fallen down the stairs. The not knowing if you were ok scared the hell out of me.
How did you feel when I said I was pregnant? Did you have any concerns?
I was so excited when you told me you were pregnant. At the time I think I was so excited I didn't think about anything else.
How did you feel during my pregnancy?
During your pregnancy I was worried but I knew you are a fighter and you would get through it.
How did you feel when I was hospitalised after two seizures?
After you was hospitalised twice I was really worried. All I wanted was for you to be ok and I wished I could of took it all away and made you better.
How did you feel seeing Noah born?
Seeing Noah be born I felt so proud. There was times I was worried but I knew deep down that you would deliver him safely.
How have you felt watching me as a Mum with epilepsy?
I have felt proud. I know there are times that you struggle with the epilepsy and being a mum but I know you are doing the best job you can to look after Noah.
How does it feel knowing often I rely on you to help me?
It doesn't bother me at all, you are my sister and I will always be here to help you in any way I can.
Have you explained my epilepsy to Freddie and what have you told him?
We have told Freddie that you have epilepsy. All we have said to him so far is that it makes you feel unwell. He has never seen you have a seizure. (My nephew calls it lepepsi – it is very cute to hear)
I think the fact Stet has very little recollection of epilepsy as a child is a credit to my parents, unfortunately epilepsy was part of our ‘normal’ everyday life and my parents made sure it stayed that way as much as possible. I know Stet has felt the effects of my epilepsy more as an adult than she ever did as a child and I know how much it hurts her, but regardless of that she is my tower of strength. Thank You Stet and I love you so much xxx
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.