I first became involved with Haven House after we were referred to the hospice in 2005 by a community nursing team for our oldest daughter, Leila, who was three. She was born with complex care needs. She had cerebral palsy, epilepsy and was registered blind. Leila required round the clock care and would regularly come to the hospice for day and overnight respite. This gave us a chance to spend extra time with our two toddlers and recharge our batteries.

Leila absolutely loved coming to Haven House and she used the hospice for around two years. We always knew she was not likely to live into adulthood which was really tough. When Leila died she also came to the hospice and between the time of her death and the funeral she was laid to rest in the Butterfly Suite which provided a very special time for us to say goodbye.

We had a lot of support from the bereavement team and our two younger children received sibling support. All of a sudden they had lost their oldest sister and it was difficult for them to make sense of what had happened. As a family we have very fond memories of Leila at Haven House. She was very gentle and generally a happy girl. The care was always really great and she did lots of fun play activities. She enjoyed being outdoors and the grounds were wonderful for her to be in. She particularly loved being swung in the wheelchair swing.

For parents it can be very lonely caring for a child with complex needs and then to lose your child makes you feel even more isolated. After a time people often forget and no longer see you as the child’s parent, but at Haven House I’m still Leila’s mum. To have had that support and a place where we are always known as Leila’s family is very special. The annual Memory Day, which takes place for families who have lost children, is very important as it’s a time to reflect on the journey you have gone through and continue to go through. You do eventually move forward as a bereaved parent, but it can be very difficult. Leila will always be with us and Haven House validates that feeling.

I became a Trustee of Haven House in 2015 and I have been able to meet many other parents who are supported by Haven House. Being able to contribute to the ongoing development of services for these families is something I have found really rewarding and it’s a way for me to give something back. It’s great to see how Haven House has expanded its care over the years with services such as music therapy and physio. Most of the parents give really positive feedback about the care we provide to their children, which is wonderful to hear and read. It’s a real honour to be a Trustee and I have learnt a lot in the role. For me the focus in 2018 is to keep listening to the needs of families and making sure Haven House continues to provide the very best care.

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