A year ago, I remember vividly sitting here, on holiday, a week after finding out the doctors fatal prognosis for Ethan. We were devastated. We sat here crying with my brother and sister-in-law, in total dispair. Then I remember thinking for he first time, what if our baby does survive, but he can’t move his arms or legs? How will he walk? How will he eat? Play? Draw? And so many more things. At the time, it felt so scary. We were in total turmoil, but this thought that he may be ok but have a major disability, still felt pretty terrible too. We hadn’t even been told this was possible - it was just a little thought - but one that, if I’m honest, felt terrifying.

And now look at him. He is amazing!

Disability may be different…but it’s ok! The journey we are on is different to that of other babies we know, but none of us are the same, are we? Ethan’s milestones will be different, but that doesn’t make him weird or any less important. And it’s hard, yes, really hard, but he is so worth it.

I had lunch with some lovely friends and their children a month or so ago, and one of the little girls asked inquisitively “Why is his hand twisted round like that? It’s weird!” And her Mum replied so brilliantly “Darling, it’s not weird, it’s just different to yours.”

I loved her reply. Just different.

Another lovely friend gave Ethan a beautiful book for his dedication. It was called ‘You Are Special’ by Max Lucado. It’s a delightful tale about a fantasy land where there are little wooden people called Wemmicks, all made by a Man named Eli. Within the story, (I won’t give too much away!), one of the Wemmicks, who wasn’t like everyone else, went to meet Eli, who had made him. One of the things his maker said to him was ‘You are special because I made you. And I don’t make mistakes.’ As I read the story to Ethan for the first time, I sobbed at this line. God didn’t make a mistake when he made Ethan. Far from it! He may be different to others, but we’re all different, aren’t we? God doesn’t make mistakes!

One thing I found really tricky when Ethan was born was professionals and people we know referring to other children as ‘normal.’ Is my son not normal? What is normal? It’s so easy for people to say - sometimes the right words don’t quite come to us, and I know they mean no offence by it, but it was something that bothered me. We desperately don’t want Ethan growing up thinking that he isn’t normal. Yes - it’s true that we pray for a miracle everyday - because we would love for him to not have to face some of the things that we know he may well have to. No parent would wish for their child to have a disability. But it’s not because we don’t think he is normal. And It’s definitely not because he was a mistake!

It’s been such a rollercoaster coming to terms with Ethan’s disability. It took me a really long time to even be able to say that word. But it is ok - well, it’s better than ok! That scary thought that he may survive, but have such massive needs, really doesn’t seem so scary now!! Our family’s journey is just different, it’s our normal, and it’s definitely no mistake!