SUDEP Action

Making every epilepsy death count
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Tracy Stephens - a bereaved mum shares her Journey so far


I was feeling very alone with my thoughts, and feeling every door I turned to, seemed to only offer to help for a short while. One day, a lady said ‘have you heard of Epilepsy Bereaved?’ as SUDEP Action was known then in May 2012. It had just passed a year from my son Stephen falling asleep, I was so sad, empty and heartbroken beyond any words can describe.

The lady from SUDEP Action rang me following me contacting the bereavement support line, she introduced herself and we began a beautiful relationship. We made arrangements for her next call, I think it was about eight calls every two weeks apart, and  I so longed for that call, as I could speak to someone who not only listened; she cared, and understood me. Many people in my life would say unwanted words such as, ‘think of your other children’, which I always did but that didn’t ease the pain, or they would say ‘he enjoyed his life’; but at just 23 years, that also felt painful as his life was taken too soon, and so unexpectedly. Apart from his epilepsy, Stephen was very fit and well.

I could talk about anything, family members, pets and mostly what I wanted was to talk of Stephen, I could cry lots and used to apologise to  Tracy on the support line, and she would reply, ‘no, no Tracy its okay to be upset’, which meant the world and more; as others would say ‘he wouldn’t want you crying’. She would always want to know my plans for the day and encourage me to make a cuppa, I would say I am going to try and get out with the dogs, and she would want to know all about my walk at Lyme Park National Trust, which inspired me to place a bench there just for me and Stephen; and for others to enjoy the beautiful place.

As my last call came, I felt that the special friend I had made, even though I had not seen her, would be needed more in my life. She said if ever I couldn’t sleep, I could email her about my feelings, or email her anytime and she would ring me. This was so wonderful to hear, it made me cry with a smile; that it wasn’t the end as others had been. 

Often, I would contact her, during the night via email, or if any nice things happened; the support and understanding was always there for me. The same person, so she knew
all about me!  I didn’t need to explain, it just continued. Grief is never ending and the continuity of the support is so important.
 
Our calls were full of tears and smiles, I didn’t realise it then, but it was the beginning of a changed me. In 2015, I was diagnosed with cancer, and now after treatment in full remission, I made my first annual SUDEP Action weekend conference at Woodland Grange, and shared a truly lovely weekend of emotion and bonds that will last forever.  

I feel so blessed to have found Tracy Cowdry at SUDEP Action, and still love her calls. I have now found work at a lovely nursery/school, and have completed a 3 hour Zumba smileathon as well as the Great Manchester 10k run for charities very close to my heart; Christies Beechwood and SUDEP Action, raising £1390.88 xx kindness from so many. I do things each day for Stephen, which makes me smile at the end of every day, at what I have achieved for us both.

If you would like to speak to someone on the support team please call 01235 772852 or email support@sudep.org.