We only had one Christmas with Winnie.
We were in intensive care when a doctor first mentioned Tŷ Hafan to us. Anton didn’t know what it was, but I did. ‘Tŷ Hafan’s a hospice,’ I thought. ‘No way is Winnie ever going there.’
Donate today
That special bond
Winnie was a bit of a shock, to be honest. She wasn’t planned – she was a happy accident. We already had two boys, Arthur and Henry, when Winnie arrived our family was complete. I was so happy. Now I had a daughter I could have that special bond that I have with my mother.
She was a delicate little thing, not like her brothers. The boys loved their food, but Winnie wasn’t a good feeder at all. Although at Christmas she managed to get Yorkshire pudding and gravy all over her vest! We didn’t know then that it would be her only Christmas.
Winnie started to get quiet. She was eight months old and in hospital with tummy problems. But then the doctors told us they’d found a white mass on her brain. They told me and Anton to go home and spend as much time as possible with Winnie as they didn’t know how much time she had left.
Donate today
I couldn’t – and wouldn’t – believe it
We had Winnie home for four weeks. Our routine was full on but I was prepared to do anything for her. She loved Wotsits and Poppadums and could wrap us all around her little fi nger! And she idolised her big brothers.
But she went bad again, went back to intensive care and a few weeks later another scan showed the mass had grown. The doctors told us Winnie had Alexander Disease, and she wasn’t going to get better.
That was the moment of realisation for us. Nobody can prepare you for the news that your child is going to die.
Without Ty Hafan it would have been awful. The nurses at the hospital are amazing, I know they would have tried their best for Winnie. But everything in hospital is so clinical, it just wasn’t want we wanted for Winnie in her fi nal days and hours.
No family should have to face what we went through alone but, for every family like mine, there are nine other families in Wales who have nowhere to turn.
Winnie passed away in my arms
I couldn’t have been more wrong with my assumptions about a hospice. We were told there were things to do. You’ll be making memories, her brothers can actively play with her again. They can do arts and crafts. The support the whole family had from Tŷ Hafan was, and continues to be, incredible.
Winnie was transferred from Cardiff hospital in a special ambulance, on a ventilator. I was with her and Anton was driven over by my brother. Going up the drive, on the day we arrived, it was a boiling hot day, all the flowers were blooming and there were bees and butterflies. It was like heaven – magical. You feel a sense of calm. Everything’s lifted.
We’d been at Tŷ Hafan for about fi ve hours when Winnie was taken off the ventilator. I was able to pick her up and walk outside with her in my arms, free of all the prodding and poking. Tŷ Hafan weren’t only there to keep Winnie comfortable, the whole team were supporting me, Anton and the boys. Arthur and Henry had been swept away with the play workers to have fun and make memories. Being at Ty Hafan gave me and Anton our final moments with Winnie somewhere beautiful, peaceful.