Together for Short Lives
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Mike’s story: I’m proud of my family

It all began in the first trimester of my wife Ali’s pregnancy.

She caught CMV, a common virus that’s usually harmless, but can cause problems if a baby contracts it during pregnancy. We’d been worried about the baby following Ali’s illness, but we didn’t discover the extent of the damage until Iona was ten days old. We were told she’d been badly affected by the virus, and had severe brain damage and cerebral palsy as a result. As a result, she’ll probably have a shorter life. She doesn’t walk and doesn’t talk, but is alert, and very sociable, always smiling.

The complexity of her needs, however, meant that schooling was a challenge for us. We decided that home-schooling would be the best option for us to ensure she was happy and healthy, so we did that from when she was about 8. Whilst it was the best decision for all of us, that’s not to say that Ali hasn’t found it hard. It’s a full-time job for her with only 3 hours of government-funded respite a week.

Our situation is made even trickier by the fact that our family support network is pretty small. Our only real assistance is those 3 hours of government support and the time we get at Little Bridge House, the hospice. We get 14 days’ respite there, which is awesome. We’ve been going as a family for around 9 years, and we know Little Bridge House really well. Iona’s had loads of great experiences there, in the sensory room and playing with the care staff. And she loves the water, so it’s our main opportunity to go for a jacuzzi altogether. It’s lovely family time and my girls take turns holding Iona in the water, it’s really the only time they can play together like that. It’s not just Iona who loves going to the hospice though; it’s great for us because it’s the only real time Ali and I get together: generally that’ll be a walk along the beach, or going for a coffee, and we really appreciate that time together.

[Going to Little Bridge House] is lovely family time and my girls take turns holding Iona in the water, it's really the only time they can play together like that. It’s not just Iona who loves going to the hospice though; it’s great for us because it's the only real time Ali and I get together.

Mike

They’ve also got sibling workers there, 3 of whom who have been a really consistent part of our kids’ lives. The children can chill out there and sit in their office and chat away. It’s not necessarily anything heavy about what it’s like to have a sister who will have a short life, it’s just having time with people to talk.

I suppose the other side of the coin is that, being at the hospice, they slowly get the understanding that Iona will have a short life, and that’s a conversation we haven’t had with them. It’s a conversation Ali’s had with Leilani, and that’s because it came up at the right time, and she wanted to talk about it. We haven’t staged any conversations with the kids about Iona, but I think the hospice gives us an opportunity for the children to see other families who are going through bereavement, and it suddenly twigs that the hospice is actually a place for end of life as well. We don’t know how long Iona will live for, it could be another 15 years. We had our first real scare about 2 years ago, when she got pneumonia and was really poorly. It was touch and go, but up to there we’d had such a dream run.

Of course, that doesn’t change the fact that having a sister with complex needs is hard at times for the children, and we’ve had to make sacrifices as a family. But what wows me is how sensitive they are – to Iona’s needs and each other’s. There are times when Iona’s upset, and they’ll all sit with her, comforting her. Even our youngest children, Cerys and Sammy, have an amount of compassion and understanding that I doubt many children their age would have.

What wows me is how sensitive [my children] are – to Iona’s needs and each other’s. Even our youngest children, Cerys and Sammy, have an amount of compassion and understanding that I doubt many children their age would have.

Mike

As she’s got older, our eldest daughter Leilani has been a really great support for us. She’s 17 now, and was 2 when Iona came along. We see these stories about children being carers: well in our family we’re all carers of Iona, it’s the way it is.

I’m very proud of who we are as a family, and I’m proud of my children. They’re so accepting and they’re growing into this understanding of difference and how great that is. It’s a really natural thing for them, because it’s how our lives have always been. We’ve always been visible in our village and our community knows us: we might not know them, but they certainly know Ali and Iona.

Iona’s 15 now, and she’s a huge part of our family, and the choices we make about her care reflect that. We’ve never seen her needs as a negative – we just think, what can we do? And then we do it. We love camping for example, and we still camp in a tent with no facilities and the kids love it. We just need to think ahead a bit to make it happen.

Family stories