To look at Oliver, he looks like any other baby his age. He’s such a happy little baby, loves his food and, so far (when he’s not teething), he’s a good sleeper.
But he’s also a fighter.
When he was born, he wasn’t breathing and had eight separate bleeds on his brain. The smallest movements could have catastrophic effects. We were told he was lucky when he reached six days old.
We were allowed to take him home after a month, but we were still so scared. He was diagnosed a grade three HIE which affects his brain but can also affect other areas of his body, and is because of the lack of oxygen when he was born. He also has intercranial haemorrhaging, cerebral palsy, hearing loss and an epilepsy syndrome.
Then a nurse mentioned Brian House Children’s Hospice. We were naïve. We thought that meant he wasn’t getting better – that he was getting worse and it was time to plan for the end. Surely hospices mean dying? We weren’t ready.
She explained that Brian House was a place of support for children like Oliver, and she helped us with the referral forms.
Not long afterwards, we went to visit Brian House.
It wasn’t at all like we expected; it was such a bright and happy place and they talked to us about how they could help look after Oliver as well as support us with caring for him and any changes his condition may bring.
To look at Oliver, he’s like any other baby – just a bit small. I did feel like we were imposters being in Brian House because he doesn’t look poorly. But all children are different. We were welcomed into the family the moment we stepped through the door and everyone has been so fantastic.
Since then, Oliver has had a couple of daytime visits and an overnight stay with more planned soon. He loves it, and it means so much to us knowing he’s being taken care of.
We’ve even started going to Brian House parent and baby sessions. They take Oliver to play and give us a hot drink, and we just talk. It’s a chance to get out and speak to people who have similar experiences to ours and share the same worries for our children. We’ve all become friends and support each other outside of Brian House.
The doctors told us Oliver wouldn’t be able to walk. They said he wouldn’t talk. They prepared us to expect severe learning difficulties.
It was heart-breaking. We believe life is limitless, and to hear that was incredibly hard.
But they said he wouldn’t be able to feed orally, but thanks to our determination he loves his food and milk without a tube in sight! We have hope. We have everything.
Kerry & Lee
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