“Joe’s here for a good time, not a long time. That’s our motto.” From playing in a ball pool for the first time to fundraising firefighters – we’re side-by-side with Joe and his mum Toni.
Although he was born prematurely and had a hole in the heart and respiratory problems, Joe was living a relatively normal baby’s life until he had a huge seizure at 10 months old. Everyone thought he would die. The life support machine was turned off and he was given hours to live.
But hours turned to days, days to weeks and – 14 years later – Joe is still fighting fit and a happy, smiling, communicative teenager.
Building a relationship with Noah’s Ark
Noah’s Ark has been side-by-side with Joe and his mum Toni for so many of those years, as she slowly built up a relationship of trust with music therapist Kirsty and then the whole charity after that.
“I struggle to trust services, but Noah’s Ark is different. Kirsty was the first one to realise Joe’s potential – for her, it was always about what he could do and not what he couldn’t do. Kirsty saw Joe’s potential which made such a difference. She was so committed to Joe that she’s been here pregnant, on crutches and in the snow!”
The relationship with Kirsty meant that Noah’s Ark Children’s Hospice became the first significant service that Toni had trusted. It’s developed from there, thanks to the variety of Noah’s Ark offering:
“Everything about Noah’s Ark just works, unlike other services. The communication with Katie, our Specialist Carer, with Adele, our Family Link Worker and with Kirsty, the Music Therapist – it’s a whole family approach and we really feel valued. And Katie offers so much more than just ‘care’, she does arts and crafts and sensory work with Joe and they’re building a lovely relationship.”
For Toni, Noah’s Ark has helped her and Joe to tick things off his bucket list: “Just last week he went in a ball pool for the first time ever. He was hesitant initially… but then you could see the smile spread across his face. Joe loved it! It’s things we’d never have done otherwise. It’s so important to take advantage of all opportunities.”
Appreciation of The Ark
Toni looks forward to spending more time at The Ark: “We waited years for The Ark to be built. Because it’s purpose-built, it’s a facility that really works for Joe, being completely and genuinely accessible. I can’t wait to visit in the summer and have a picnic, spend the day there, use the fully-accessible playground. There’s usually only one thing in a playground that a kid like Joe can do – if any – but there’s so much for him to do at The Ark. He won’t be battling with other kids and he can go on everything!”
The Ark gives Toni a place that she can spend time with Joe, her family and others in the same situation: “It’s so important for me to be able to see other parents and compare experiences. When I came to The Ark and got Joe’s syringe pump out it felt strange – I usually administer Joe’s medicine on the sly so as not to attract attention – but everyone was doing it. It felt good just to be normal!”
Toni is adamant that, when it comes time for Joe, they’ll spend his final days at The Ark: “They’re our family now. We all know where the journey will end and we want it to be somewhere that we feel loved and accepted with people we know around. We couldn’t imagine anywhere better than The Ark.”
Making the most of every day
Toni doesn’t want people’s pity, she’s adamant that Joe has the life of a prince. People often ask her about her concerns over missing out on life events such as her child’s wedding, but she sees it differently, always celebrating the amazing years that she’s had with Joe. Toni wants to make life as good and comfortable for him as possible. As she says: “Joe’s here for a good time, not a long time. That’s our motto!”