Show your love: Kai's story

Read Kai’s story

Kindly shared by his mums Leanne and Sara

Hearing this year’s fireworks begin, we’re transported back to last November, when we shared one final fireworks night with our little boy Kai at Chestnut Tree House.

Kai had a wonderful, cheeky personality, and our nickname for him was ‘Pickle’. He could show love just by the look in his eyes; those eyes spoke a million words. He always had a smile, too. Whenever his little sister Aya was around, he’d beam. And wherever we took him, he would be the centre of attention, with everyone cooing over him.

When Kai was just five months old, we found out he had a life-limiting brain condition. He would never walk or talk, and wasn’t expected to live past the age of two. But amazingly, he defied this prediction and lived until he was six and a half years old.

Thanks to Chestnut Tree House, the years we had with Kai were packed with love, laughter and precious memories. Because of the hospice’s care, Kai was able to join in activities that many families take in their stride – from swimming in the hydrotherapy pool to line-dancing at Chestnut’s day-long summer festival, ‘Chestival’. He even went skiing! We were terrified watching him fly down a ski slope in his wheelchair, but he was grinning – and went down 12 more times. We’ll never forget the smile on his face.

Creating special moments

We’d always wanted to get married – but we weren’t going to do it without Kai. We ended up bringing our plans forward because he was having a rocky time in hospital, but the team at Chestnut Tree House made sure he could be with us on our special day. Without them, the wedding wouldn’t have happened.

One of the nurses collected him from the hospital and helped Kai get ready; they thought of everything. In his little suit and with a fresh haircut too, he looked so handsome. Because of their thoughtful, dedicated care, Kai was even able to accompany Leanne down the aisle to give her away. He stole the show – and we’ll treasure that moment forever.

Later, once it became clear Kai was coming to the end of his life, we were met with familiar faces and open arms at Chestnut Tree House.

We’d been in hospital with Kai for nearly a year, and when we left for the last time, coming to Chestnut Tree House was like coming home. A weight lifted from our shoulders – we could just breathe, hold Kai’s hand, and be a family again.

Staying there, we didn’t have to worry about everyday life; we just got to be mummies to Kai and Aya. It was the small things that brought us the most comfort: a family meal, holding hands, showing Kai our love by lying next to him on the specially adapted cuddle bed.

One of the things we loved most at the hospice was that cuddle bed. It’s a double-sized hospital bed where we could hold our baby boy properly for the first time in ages – comfort him and stroke his hair, no machines or wires in the way.

We needed that moment of just being mums embracing our son. And he loved knowing we were there with him; he would show it by giving his little smile. Cuddled up to Kai, we slept well for the first time in years.

Early Christmas and lasting memories

We knew we didn’t have long left with Kai, and we wanted more than anything to celebrate one last Christmas as a family. So, in November, we created our own Santa’s grotto with decorations and fairy lights, and had our early Christmas here at the hospice. We’ll always cherish this memory; we watched the Chestnut Tree House pantomime with Kai, and even brought the piano into his room for a sing-song.

As winter approaches, we’re also filled with the wonderful memories of the fireworks Chestnut Tree House organised for us – or ‘Kai Works’, as they became known. It was a night of glittering lights and colours. We had pizza, hot chocolate and marshmallows, and we watched Kai give little smiles as he soaked up the atmosphere. He loved hearing everyone around him. If we’d been at home or in hospital, it would never have been possible.

When Kai sadly passed away in mid-December, we were faced with the prospect of being without him for Christmas – which would have been unbearable. But we were able to stay at the hospice, the team here by our side. We weren’t on our own.

Kai was in the Stars bereavement suite, which is a special, homely space where children can lie at rest with their family close by. We could be with him as much as we wanted, and say goodbye in our own time.

The Chestnut team went out of their way to support us. On Christmas Day, we did everything you’d want to do: ate lovely food, played games and watched films. We even went swimming, because it had been Kai’s favourite activity. Nothing was too much trouble; they thought of every detail.

It was the worst Christmas, but thanks to the love shown to us by everyone at Chestnut Tree House, we can also say it was one of the best.

Looking to the future