I’ve been tempted to start a blog before. I’ve imagined myself publishing a cool, clever and quirky blog full of witty anecdotes and arty pictures. Just for fun. But despite all the daydreaming, I’ve never blogged before now. And I’ll admit, I’m a bit nervous, especially because of the reason behind my decision to finally bite the bullet and get writing.
I’ll get straight to the point. In November my baby boy, Hugo, was diagnosed with Biliary Atresia, a rare liver disease, when he was eight weeks old. In the weeks that have passed since then, our world has been turned upside down and inside out. He had a major operation (the Kasai procedure) when he was just ten weeks old, and we’re now on a long and bumpy road into the unknown.
When we first found out about his illness, we did what everyone would – but shouldn’t – do. We hit Google. And while we found some very useful medical sites (from the CLDF, in particular), we found many more scary medical and (what we hoped were exaggerated) personal experiences. We didn’t find much in the way of real insight into living with a liver disease, something that would have been really helpful, particularly in the very early days.
My husband suggested that starting a blog would be a good thing for me to do. Something to occupy my mind and keep it ticking in amongst the nappy changes and baby talk. An outlet through which I can process what is happening, where I can formulate my thoughts and deal with the fear and uncertainty that has been unleashed on our lives. A medium through which I can try to raise awareness of BA, and liver health in babies in general. A place to document and share our journey with you and, one day, with Hugo. A type of therapy, in truth.
So here we are. It’s not the whimsical, romantic blog I envisaged I would one day create. But it’s real, it’s true, and it’s my life – and I, for one, think that’s better.
I hope you enjoy it.