When Elis was born, she had facial palsy, heart problems, feeding issues and was deaf. At nine days old, the doctors told us that Elis’ brain had not developed by the time she was born and they did not expect her to leave the special care baby unit. Sitting in the doctor’s office with my wife and hearing this, it felt like I was drowning. My mind was racing, trying to work out how to deal with it while trying to stay sane at the same time. I was questioning everything and I felt really alone, that I couldn’t or shouldn’t speak to anyone because if I did, then everyone else would crumble. I was trying to be strong for the family and then going away and having a meltdown myself, away from everyone else.
Thinking about it, this is when we started to grieve for Elis. We were faced with a parent’s worst nightmare: the idea that we were going to outlive our child. She was still with us now but she wasn’t going to be and that thought broke me.
We started to come to Tŷ Hafan for respite breaks. I was so nervous but as soon as we walked in, my fears were lifted. The ease that Elis felt in the hospice was plain to see and that automatically made me feel relief. You could see that the nurses cared for all the children like their own and we felt at ease letting them look after Elis, giving us the valuable opportunity to spend some time together as a family.
With the stress lifted off us by the care team, we could start being parents rather than carers. Elis absolutely loved the sensory room at the hospice, her eyes just lit up whenever she could use it. Seeing her enjoying all the lights and bubbles, it was perfect.
With the help of the play team, we made even more memories. We played with Elis as a family and they took photos of us together. Those photos from that day and the artwork that Elis created take pride of place in our house now, reminding us of the happy times. Things like that are so important to us because they keep Elis with us, in our family even if she isn’t here physically.
Elis died when she was 16 months old. She died following an operation when she caught a virus. The doctors had decided to move her to a ventilator in intensive care and since we wouldn’t be able to see her while they moved her, we decided to pop home to see our other children. When we got home, we received a phone call to say that Elis had died. It was the worst thing that has ever happened to me.
And that's when everything went silent. All the noise and all the visitors, they went away and we were just left there.
They supported us through it all, the grief and the sadness, and shared their own memories of Elis with us. The support that was available to us, both in her life and after her death, was incredible. They kept checking in on us and offering support when we needed it. They invited Elis’ brothers and sister to groups and to days out where they could meet and talk and play with other siblings. They put us in contact with other families and through meet ups, we shared our experiences. We could just come to Tŷ Hafan and talk without any judgements, and they understood the things we were going through. They helped us realise that Elis would always be a part of our family, even when she had died. We can say her name and talk about her, to celebrate her birthday and buy her presents. It’s ok to do all of those things because she is still a part of our family and we are still her mum and dad.
However after Elis’ death, we noticed that friends became distant. The people who knew her, they stopped talking about her and saying her name for fear of upsetting us but what they didn’t understand is that we want to hear her name. We want to talk about her, we want them to ask questions about the condition she had and the care she received because she is still a part of us. It got to the point where we weren’t hearing Elis mentioned outside of our own family and that scared me because it felt like her memory was fading. Tŷ Hafan understood this; they knew how important it was for us that Elis’s name was somehow forever.
Ten years on and Tŷ Hafan is still helping to keep Elis with us. They’re who we turn to when we need support or guidance or even if we just want to hear Elis’ name. Their care doesn’t stop and now with their Birdsong project, Elis will forever be present at Tŷ Hafan. Birdsong gives us the opportunity to remember and celebrate Elis and the other Tŷ Hafan children who have died by translating their names into birdsong using Morse code and playing their melody in the hospice memorial garden. It serves as a reminder of their lives and the care they received.
When I went to the hospice last, I visited the gardens. I sat and waited to hear Elis’ name. Hearing all those unique birdsongs and the lives they represent, I felt a sense of calm drift over me as I realised that Elis isn’t alone here, she is part of an incredible harmony with all the other children. She won’t fade away in time, she will always be with us and she will always be here singing out her name with her friends.