Samantha was my first baby, born when I was only 16. She was the oldest of 3 children; Scott was born when she was aged 2 and Kerry came along 8 years later when Samantha was 10. She was a happy child, always smiling, laughing and cheerful and it was easy to be her mum. When Kerry was born she became a second mother to her and they had a special bond.
Growing up, Sam and Scott were very close with the usual sibling mischief. Losing Sam was total devastation for both of them.
Samantha was healthy and happy with no sign of epilepsy until she had her first seizure at the age of 16. We had no warning and had no comprehension of what was happening and why she should suddenly start having seizures at that age. We were not given any explanations from medical professionals, or any advice about how to cope with the seizures, the risks, etcetera.
Through all of this; the confusion, the worry, the shock, she never let it get to her and refused to allow it to change her life. She was young, vibrant and loved life, living it to the full. She was, and still is, loved by everyone who knew her.
Samantha died on the 4th December 2004. She was twenty-five years old and was seven months pregnant with our first grandchild. We only found out it was a little boy after she had died but we were able to give him a name because she had already chosen Regan if it was a boy.
Samantha developed epilepsy in her teens. She only ever had a seizure as she was coming out of sleep and they only occurred two or three times a year. We made sure she slept in a low bed and that there was no furniture around so she could be safe. She was determined not to let the epilepsy control her life and was in the final year of a nursing degree.
When she became pregnant the seizures became more frequent and she was referred to the local hospital. Only a week before we found her, she received a letter from the consultant to say she was a low-risk patient and had nothing to worry about.
It was an exciting time for us all. A new baby. A degree completed. I remember saying to her that it would be a tough year but that it would all be worth it.
The day we found her was the worst day of my life. Everything changed. Nothing meant anything anymore and it was dark all of the time. The first time we heard of SUDEP was when the coroner gave it as the cause of death. We had no answers and so many questions. As I started searching frantically for answers, I came across a website for Epilepsy Bereaved. They returned my call and I was offered bereavement support. They also provided all the information I needed to understand more about SUDEP.
Almost fourteen years have passed since we lost Samantha. All of our lives have changed and we have moved on. Someone once said to me that life carries on but that you watch it go by through plate glass. Sometimes it seems like life has stood still but then I look at my grandsons and see how they are growing up and it’s then I realise that time is passing by, it just passes in a different direction now.
I decided I would finally put my thoughts and feelings into words and write about my journey from the darkest of times. It isn’t just my journey, as others were my unfortunate travelling companions. My book is called Through Plate Glass. I hope, through these poems, that I can show how, all these years later, it does start to become more easy to bear and that these poems can help others to understand that they are not alone in their grief.
The link to the book, available on Amazon for kindle or as a paperback is: http://amzn.eu/hOtXojV
I have written my poems for several reasons:
- To share my journey: to try to help other bereaved parents who are experiencing the numbing pain that we call grief and for them to see that we can move on, albeit slowly.
- To help to raise awareness of the risk of SUDEP for carers and those with epilepsy and to signpost where they can find help and support.
- To introduce my daughter Samantha to you all. She was a beautiful girl who you never got to meet but who you can now get to know.