SUDEP Action

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The changing picture of grief – Tina Larkworthy’s Story

Tina Larkworthy talks about losing her daughter Kim Marie Larkworthy and her changing picture of grief.  

Q: Could you tell us a little bit about your daughter Kim Marie Larkworthy?

Tina: Kim was a beautiful and caring girl, with a great sense of humour. She was very popular and well loved by her many friends and family and also patients and colleagues of our local hospital where she worked as a staff nurse looking after patients following surgery. She was studying for her nursing degree and was working towards being a sister in the hospital. 

Kim was 23 years old and she was due to move into her flat with her boyfriend Mike in three weeks. She was at a really happy time of her life albeit very busy and she had so much to look forward to. Kim was a loving daughter, we would chat about anything and everything and she was always there to lend a hand. We were more like sisters than mother and daughter and close in every way. She is missed more than words can say.

Q: When Kim died so suddenly could you tell us how this impacted on you and your life?

Tina: That Saturday morning when we discovered Kim in the bedroom facedown, not moving, was to be the start of a different life. The old familiar one ended at that point and a new desperate and unknown one began. In the early weeks, there was a lot to do to keep my mind busy, such as the post-mortem, the funeral, and all the things connected with a sudden death. Then the void sets in; people go back to living and their normality. I was existing, barely registering life.  I did the mundane things that life is about without realising I was doing them. In the supermarket, I would put Kim’s favourite food in the trolley, and at the checkout realise, Kim’s dead. 

I was in a bubble surrounded by others living their lives as normal but I couldn’t be one of them, I was in that bubble, it was like an anaesthetic, I was numb with shock. I couldn’t get beyond it, I tried to return to work after four months and we were all made redundant within two weeks when the company closed. I was back in the bubble, but gradually in that first year the anaesthetic began to wear off, and the bubble burst.  

I was in the living world again, but without the numbing effect of shock, I was faced full on with grief. The pain, both physical and mental knocked me for six and I just wanted to die. I couldn’t believe Kim had gone, she was my daughter, my child, she couldn’t be dead. I was angry, hurt and depressed. To make some sense of it the family raised money for SUDEP Action, £8000 in total and raised awareness by taking information to our GP, neurologist and MP.  Anything to make sense of the terrible loss, pain and emptiness that life was full of. 

Q: Comparing the early days when Kim died to today how is life for you now?

Tina: The first year faded into the second and people expect you to be getting on with your life and getting over it. Many would say to me “well you still have another daughter, and a granddaughter to live for”, I felt like screaming that they had no idea what my life was like. You are not supposed to lose your child before you die yourself, it’s the wrong order, I would walk away fighting back tears. Then through years, three, four and five, the grief gradually changes so subtly you don’t realise its happening. The pain of the early days is lessened, and although there were still bad days, I functioned better. 

I met others who’d lost children, and we talked constantly about our lost children, we laughed and cried and supported each other, we understood how we alone felt. I spoke to Epilepsy Bereaved (SUDEP Action), they were great support and gradually albeit slowly I started to live more than exist. Through it all, I remember that Kim was a nurse caring for others, and she would have been devastated to see the pain her death has caused her family and friends.  

So now I try to move forward with the intense love I have for her and the wonderful memories we had together, still in my heart. I am sad there will never be any new memories made, but I try my best each and every day to make her proud of me and live my life as best I can. It would be fitting for her as a nurse to see me carrying on with my life. It’s the only choice I have, and I know this different life without my wonderful daughter in it will always be a very challenging one. 

Q: Kim died nearly 8 years ago, what would you tell somebody who was newly bereaved about your journey?

Tina: Although Kim died 7 years ago, I would tell newly bereaved people that I am still on that journey that began with her death. It’s a roller coaster that constantly goes up and down with highs and lows. The hole in my life that has been caused by losing Kim never changes, it’s always there and never a day passes without me thinking about it.  I now realise after all this time that she’s not coming back, so I have reluctantly accepted It but I will never like the fact that I lost my dear daughter to SUDEP, something Kim and I had never heard of, after she had only ever had one seizure and her life was finished.  

I realise this is how I will live the rest of my life, my daughter will not return, so I must make the best of what I have, a good husband, another daughter Nicola and husband Mark, two lovely grand daughters and a grandson due in August. Kim would want me to carry on and you never stop loving your children, even when they are no longer with you. I pray she’s in a better place and watching over me. This thought keeps me living, and each day I take it as it comes. 

I don’t beat myself up if it isn’t a good day; there is no pattern or timescale with grief. We are all individual human beings and our experiences of grief will vary from one to another. With support and love and enough time, we will live through grief and continue our life to the best of our ability but we will never ever forget or stop loving those we lost to epilepsy.