Looking at the Stars: How incurable illness taught one boy everything
Amazon link: Looking at the Stars: How incurable illness taught one boy everything
In our three-part series, mum Emma shares her experience since her 17-year-old son Lewis was diagnosed with a brain tumour at 17 months old.
Published: 22/10/2018
Being a mum is the best feeling in the world. Carrying a child for nine months, helping them to grow in a safe place inside you where you are able to protect them and keep them warm until they are ready to be born into the big wide world is an incredible experience. Once they take their first breath, they are vulnerable to everything, and from the day they are born they start their own journey – their own life.
I’ve had three children, and Lewis’s birth was the easiest. He was a dream child, smiling and laughing all the time. But at 17 months his life took a change of direction: when he was diagnosed with a brain tumour, it was devastating.
I had spent the previous year and a half stopping him from bumping his head or scraping his knee, and now, with no warning or time to adjust, I was having to hand my child over to a complete stranger, knowing he was going to remove part of his skull and cut into his brain.
The guilt you feel when your child is sick is overwhelming. I kept asking myself what I’d done wrong. Why was Lewis so poorly? Was it my fault? At that moment it took all my strength just to stand on my own two feet. How, I wondered, is any human being supposed to cope with a situation like this and not curl up in a ball and want to die?
I soon discovered how. You cope because you have to. Yes, you are suffering the most horrific pain inside, but you have to be the strongest person on the outside to keep everyone else going.
Lewis needed me to be strong for him, so I put my own fear and tears away and threw myself into being the best mum I could be, for him and my girls. I promised myself that I would give them the best life I could and that I would always support and be there for them, no matter what.
Emma’s blog is taken from her son Lewis’s book Looking at the stars. Lewis’s charity and campaign is Friend Finder, helping chronically ill and disabled children have fun and make friends. Lewis is now 17 years old – he has been in and out of hospital since he was diagnosed with a brain tumour at 17 months old.
Amazon link: Looking at the Stars: How incurable illness taught one boy everything
Our second instalment of three shares mum Emma’s experience of parenting a child with health problems and watching his shining qualities emerge.
Mum Emma she explains how her teenage son Lewis’s disability hasn’t stopped his determination to set up a charity so no child faces childhood illness alone.