Arlo is very poorly. He can have up to 40 fits a day, he can’t see well, on a bad day he doesn’t sleep and, because it takes 40 minutes to feed him through a tube, caring for him takes a lot of time.
It’s hard on him. It’s hard on us. And it’s hard on our three other children.
Arlo is only two and we’ve already nearly lost him twice. The first time he was just two weeks old. He pulled through, but we know one day he won’t. But we will have given him the best life possible.
After Arlo was born, I knew something wasn’t right.
Because of the pandemic, everything happened slower than it should have. But he got seen by an eye specialist, who diagnosed a damaged optic nerve and referred him to hospital.
When the doctors saw him, they knew straight away something was wrong. An MRI showed he had three splits in his brain. They quickly got him on medication to control his seizures, and we got a diagnosis. It’s complicated and there is a lot that’s unknown about his condition.
My heart broke. More than that – I felt like my entire world fell apart.
Brian House was mentioned quickly because they knew how poorly Arlo was going to be. It was like a wave hit me. You hear that word and you think of death.
But it’s nothing like what you imagine. Brian House is a family. It’s a home from home. As soon as I walked in, I was just at ease and felt really supported both for Arlo and as his mum. There is just such a lovely, homely feeling.
Arlo loves it at Brian House – he really enjoys the cuddles and the music, and his whole face lights up as soon as he hears the staff. He just loves them. And I get the chance to give my other children my full attention. It has made a huge difference to all of us.
We also go to the toddler group. It’s such a support to me – I just talk everyone’s ears off. I can speak to the other parents without judgement, and the staff are there to support us and understand us. It’s my chance to get a lot of things off my chest that otherwise I bottle up.
Without Brian House, we would all be lost.