On Kai’s First Birthday

By 11th October 2017 No Comments

Today, Kai turns one.

This feels overwhelming, and I’m a bit teary.


I wish I’d known. I wish I’d known that we’d make it a year. I wish I’d known when we were in intensive care, and the neurologist was telling us Kai’s brain was shutting down and there was nothing they could do. I wish I’d known all those times I cried over his incubator. In those first few weeks where I was desperate to hold him, when we were willing him to breathe, when we watched them take pints and pints of blood, pumping back in a cocktail of ‘this might help’ drugs.

I wish I’d known to expect more than the fear. That someone could have sat us down and said sure, there will be fear and grief and hardship, but there will also be a lot of love, and hope and smiles. And that in the good moments (because there will be good moments) your heart will burst with all the love and joy. And it would happen frequently. That with every new skill, with every developmental increment there would be more celebration than you could imagine.

That the love for our little guy would stretch further than our family and friends. That people would run marathons, hold concerts and would walk extreme distances in his name. They would knit blankets and bees, and make cakes and organise pub quizzes and wine tastings for him. That people who have never even met him would love him.

I wish I known how kind people would be to us.  That so many kind words would be shared, so many generous gestures taken, an overwhelming number of kind acts done over and over again is humbling. I wish I’d known our village would rally around us, and would grow. That we’d be so supported. That Kai would be so loved.

I wish I’d known that desipte the hard times, we’d rally. That we wouldn’t take NKH lying down, and we would raise over £40,000 for research against it. That we would contribute towards a cure.

I wish I’d known how much the NKH community would come to mean to our little family. How many friends we’d make, how many wonderful people we’d meet from all over the world, how many other NKH kids we’d end up loving. I wish I’d know how we weren’t alone, and what that really meant.

I wish I could have told the me that was reeling from the diagnosis what, truly, this year was going to mean.

When I think back, I’m overwhelmed with it all.

But first and foremost when I think about Kai. I think about the hardship’s he’s had to endure the past year, the pain and the medical appointments and all the tests. And I think about how all of that is now, thankfully, not the bulk of our day to day.  I think about much he’s grown, and how much delight he shows. How he enjoys his day – his little verbal squawks and his determination to do exactly what he wants to. Just how unbelievably beautiful he is.

I feel lucky, so ridiculously lucky that we’ve had a whole year with Kai. That we made it.

(Also: A big giant Fuck You to all the doctors who ever told us we wouldn’t).

Happy Birthday little guy, we love you more than you’ll ever know.

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