The Way I See It

Never thought I'd say this, but yes. We're in a good place now with Vera. She's responding more to us than ever. Not anywhere near normal babies, but she's showing us new abilities, here and there, like sucking her hands, sucking on my finger, responding at times with big smiles.

Everything she does I see as a bonus. Because they really are. And it's a great feeling you know? Not expecting anything from your child. Other people stress over whether their kids do well in pre-school, college, university, in their career, in their love life...all through their lifetime. We're not on that yellow brick road.

For me, it's entirely different. It's 'Hey Vera. Let's see what you can do. What you can't is ok, it's already much more than we hope for.'

For others, if their child passes on prematurely, it is a life cut short. For Vera, she's already outlived her expectancy. When I realised this reality, it really put things into perspective. It gives me a great feeling of release, a freeing of the heart and mind from fear of the future.

What about Quality of Life? Some ask. She'll have so many medical problems. Well, don't we all come to that stage at some point in our lives? When we're old, tired, weary and unwell. It's the same life process isn't it? Delayed for us so we don't have to deal with it just yet; Accelerated for babies like Vera.

One mother once told me, 'This journey is an intense one'. It sure is. Because you can ever feel, joy, pain, peace, frustration...all come together in every moment.

I hope I survive the ride.