Greg’s story
“It actually breaks my heart to know that there are families like ours out there who don’t have the support that we have had or the experiences that we have had.”
“I can’t even begin to comprehend what it would be like to go through this alone.”
Is this the time we’re going to lose him?
From the age of two when Greg was diagnosed with a life limiting heart and lung condition we lived with anticipatory grief.
At times it was in the background. And at others we were living with ‘Is this the time we’re going to lose him?’. At the time you just have to do what you have to do to get him through it. Then he recovers and people say ‘He’s better now’.
It’s afterwards you just crumble and think to yourself, ‘That was terrifying’. At Tŷ Hafan you’re somewhere you can talk to people who understand exactly what you’re going through.
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A gorgeous baby
Greg was born late on a Friday night. The following day we found out he had Down’s Syndrome. He was a gorgeous baby, so easy to look after. Down’s Syndrome was never an issue for us. It made him who he was.
At six months old it was identified that he had cardiac issues. He had his first heart surgery at 14-months-old. Then, when Greg was two, we were told he had an incurable heart and lung condition and he had a life expectancy of five or so years
I was going to pieces
My husband, Paul, and I were devastated and I felt that I was going to pieces. It was December 1993 and I was pregnant with our son, Tom. But then Tom was born in the April and there was joy. Meanwhile, Greg showed no signs of his condition. Months went by, then years.
It was when he was 11, he started have episodes where he would go blue and by the time Greg was 15 he was becoming much more symptomatic and was referred to Tŷ Hafan. This is the only place where I could just be his mum. And it was so nice to let the carer part of me go for the time that we were here – I could just be his mum.
Greg loved Tŷ Hafan. He loved the people here. It’s the place I come to remember, remember him playing here. It was a place he loved. In the later years of our involvement with Tŷ Hafan, we’d come down for the afternoon – and for those couple of hours – he had fun and felt at home. And everyone at Tŷ Hafan made him feel special, just like he was.
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Tŷ Hafan was our safe space
We were so terrified during Covid. The gardens at Tŷ Hafan became our safe space. Being able to come here meant we could reconnect with people who knew us, who knew Greg, people he knew loved him.
In July 2022 Greg had a stroke. That’s when we knew the path we were on. It was an indication his illness was really progressing and it was now a question of time. He was unwell for a good couple of months and during this time Sophie and Heather would come out to see him. Heather would play music and sing to him and I could sit with Sophie and just talk everything through. Invaluable support during such a difficult time
Grief has no time limit
It’s 2 years 3 months and 6 days since we lost Greg. But to me it’s no time at all. Because he’s still so present.
Tŷ Hafan is somewhere I can go and I know that people will understand. It’s helped me to accept that I’m going to grieve for the rest of my life. The awfulness of it. How can my little boy not be here? But I plod on. You have to. And Tŷ Hafan has helped me to understand that it is perfectly normal to feel sadness alongside other feelings such as the joy of our first Grandchild being born.
Having Tŷ Hafan in our lives has been totally life-changing. It is worrying caring day-to-day. There were times which were far more challenging than others. But if you’ve got somewhere to turn to, to even just talk it through, it stops that awful feeling of isolation. And grief has no time limit.
It actually breaks my heart to know that there are families like ours out there who don’t have the support that we have had or the experiences that we have had. I can’t even begin to comprehend what it would be like to go through this alone.”
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