Clare’s story
Clare ran the London Marathon this year with her daughter, Georgie, and her friend Emma. Clare ran in memory of her son Harry, who would've been 30 this year.
Tell me a bit about you
I run my own business that provides specialist support for people with hoarding behaviours. Often, the people I support have had a life experience that’s triggered them to begin hoarding. A lot of the time this trigger can be related to loss, whether that’s the loss of a job, identity, or a family member. It’s likely that my personal experiences of loss, with Nerice’s death at the heart of this, has led me into this area of work.
Tell us more about Nerice
I remember the ambulance arriving to take Nerice to the hospital. My ex-husband and I weren’t even dressed but they said we had to go to the hospital immediately. We told them to go and that we would follow. When we got to the hospital, it was obvious that Nerice had died by how the staff greeted us. They said that they would bring her through to a room where we could go and say goodbye to her.
I’m so grateful to the hospital for how they treated us and Nerice. She was placed in a wicker basket with her baby grow on, and there was a lamp next to her. At the time I thought it was just a normal lamp, but on reflection I’ve realised it was a heat lamp to keep her warm. This thoughtful act has really stuck with me. It meant that Nerice was warm the last time I held her, and the last time I kissed her little nose.
I will never know why my daughter died. The reason for her death was given as ‘open verdict’, which basically meant they didn’t know why her body shut down. Knowing I will never have an answer, or anything to blame, is the hardest part.
Could you tell me a bit more about your experience of grief?
Most people take a whole journey through the grief process. It’s not a thing you get over quickly. You might move on practically, and continue your day-to-day life, but the grief is always with you. My family and friends tried their best to help but the physical and mental pain is just all-consuming. It felt that unless someone had experienced their child die themselves, they wouldn’t understand at all what I was going through. Since I was pregnant quite shortly after Nerice died, I was instantly in survival mode. I put my grief on pause.
Nerice’s death really affected Owen too. I’ve always told him he has an older sister, and explained little bits of what happened at different times and in age appropriate ways. As a child, he used to think he would go to sleep and die in his sleep, because that’s how Nerice died. He also had night terrors. It was difficult as I didn’t have any other narrative for him or any easier way to explain what had happened.
How did your grief change over the years?
I ended up not properly working through my grief until long after my son, Owen, was born. When he was 11 and I was in a more stable relationship, I began to feel more safe and secure. My husband could look after him whilst I began to face my grief, 12 years after Nerice’s death. I was on a waiting list for bereavement counselling but had to wait 18 months.
Later in life, I found out I have post-traumatic stress disorder (PTSD) that stems from Nerice’s death and other losses in my life, some of which happened around the same time. I’ve worked on myself in recent years and learnt what my PTSD triggers are and how to manage them. I’ve also now had bereavement counselling which was really helpful.
With grief, you tend to count a lot, the years, the birthdays, the anniversaries. It really does take a long time to begin to feel better, but now I just like to mark the milestones. Nerice’s 25th birthday was a big one for me.
What helped you to get through your dark time?
I love crafts. Being creative really was a saving grace for me. I started making greetings cards when my son was a couple of years old and I found I made my best cards when I was feeling at my lowest. It was a real outlet for me and a great way to reframe my mind. Growing vegetables and crocheting help too, they really give you time to think but also distract the mind. Creating something helped give me an extra purpose.
How did the Care of Next Infant programme (CONI) support you?
The CONI programme supported me 25 years ago before and after the birth of my son. I don’t remember my health visitor’s name (our local CONI coordinator) but I do remember her kindness, compassion and understanding. Having the space to talk about my worries and concerns about protecting and monitoring my next child was invaluable.
The conversations I had with her were all about what I feared could happen to Owen. She listened, which meant I could talk freely and openly. Sometimes when I spoke to my family about it, they naturally want to try and ‘fix’ it and make me better because they didn’t want me to feel the physical and emotional pain. If I spoke to friends, they would often not know what to say or do.
For my CONI coordinator, it wasn’t her first time hearing concerns like mine. She didn’t try to make it better, because nobody can, but she knew some of the things that can help, and listened. Knowing she was there on the end of the phone if I needed her was a mental lifesaver. Having someone there who just ‘got it’ really helped me feel less alone, because grief is a very lonely place even if you are experiencing it alongside other family members.
CONI helped me emotionally, but also by providing practical support. I was loaned a breathing monitor and then an under sheet monitor once Owen’s breathing changed a bit, which gave me peace of mind and allowed me to be in the mental space where I could enjoy my new child. It was so needed. I wouldn’t have slept otherwise. I would’ve been emotional wreck. I am forever grateful for CONI programme.
Discover more
CONI कार्यक्रम के बारे में
The Care of Next Infant (CONI) programme supports bereaved families before and after the birth of their new baby, giving hundreds of families peace of mind and support.
किसी प्रियजन का समर्थन कैसे करें
Bereaved families share examples of something that someone said or did that helped them after their baby died.
अपने बच्चे को याद करना
Having a sense of a continued connection with a baby or young child who died is an important part of navigating grief. This page offers ideas for ways to remember and honour a little one.
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