Joe's story

Our eldest son Joe was born just before Christmas. And, sadly, he died just before Christmas too — peacefully at home, with me and his brothers close by and dad Andrew holding him close. From almost day one right to the time we said goodbye, the wonderful team at Haven House were by our side — helping us make memories together, providing respite care, and giving us a chance to be a family for the nearly seventeen years he was with us.

Joe had many medical needs. We couldn’t leave him with a relative or a babysitter — it wouldn’t be fair on them and it would be difficult for Joe too. And, frankly, Andrew and I wouldn’t have been able to relax.

But at Haven House, we knew Joe could get expert nursing care from a team who knew him — who understood him. I don’t mean they just understood his complex medical needs. They understood his personality and character. As a result, when Andrew and I took up Haven House’s offer for respite care, we knew we could take a break and Joe would be okay. 

In fact, we knew Joe would be better than okay. Because Joe loved it at Haven House! He loved spending time outdoors in their grounds. He loved the peace and tranquility of the sensory room, with its lights and music. He always looked forward to the 'big bath'. Joe’s middle brother used to call Haven House 'Joe’s hotel' — and in some ways it really was!

Haven House helped us to connect as a family. At their summer fairs and family fun days, Joe and his younger brothers always had a chance to bond. It was wonderful to watch them play and enjoy being kids together. At Christmas they’d make decorations for the tree and Santa would pay a visit. Whatever we were doing, what mattered was that Haven House let us do it together as a family. We could be parents, not carers.

It is only thanks to people like you, who care about the lives of families of a child with a life-limiting condition, that Joe, Andrew, his two brothers and I could have the respite care we needed to reconnect as a family. 

It is also thanks to the support of people like you that we could be together as a family when it was time to say goodbye to Joe.

We knew we wanted to go to Haven House after Joe died. It was our place — a place where we had made so many happy memories, and it was the place where we could take the time to say our goodbyes. We took him to the specially-designed Butterfly Room and I wrapped him in the quilt I made him when he was only ten. Together we decorated it with pictures of him and all his favourite things. We wanted him to feel at home.

We spent the next five days being peaceful together. Andrew, me and our three boys. Over forty friends and family came to visit and say their goodbyes. The team at Haven House couldn’t do enough for us. They liaised with the funeral directors, so we could focus on being with Joe. They made sure we had everything we needed.

When it was finally time for Joe to leave, the entire staff came out to say goodbye. They told me: 'thank you for letting us take care of him.' They treated him with such dignity, right to the end. The love and respect the staff gave Joe and our family meant so much to me, but I know that level of care is only made possible thanks to the kindness and compassion of people like you. Now, this Christmas, families like mine need you more than ever.

The coronavirus crisis has impacted us all, and the cancellation of fundraising events earlier in the year, like the summer fair, means Haven House has seen a drop in their income. They urgently need your support this Christmas so more families of children with life-limiting conditions can get the care and support they need to make precious memories together.

Joe’s brother Fran always said: 'Joe didn’t have a short life. He had a long life for Joe.'

And that’s so true. Joe had a life where he could enjoy sitting on beaches, feeling sand on his skin. Where he could listen to the music he loved and watch the lights in the sensory room. Where he could play with his brothers and have cuddles with me and Andrew. So much of that was made possible by Haven House — and the loving support of people like you.