I believe in fate but....

When you lose a baby, a lot of people are quick to tell you that everything happens for a reason and I appreciate the sentiment that we learn from things that are sent to try us, and that we should see the good rather than the bad in painful situations. But as I’ve said before, when a baby dies no one wins. In fact when a baby is born with NKH no one wins because it is that much of a monster. Yes we can learn from what we’ve been through. Yes we are stronger as a result. Yes we’re channeling our grief to do good, to raise awareness and to make the most of life.

But I would still rather have my son at home, healthy and flourishing without NKH right now. No amount of “lessons” that will enrich my life are reason enough for my first born to have arrived with a terminal condition that lead to his death at just 8 days old. That meant he spent most of his short life attached to cables and machines in hospital, being pricked to the point of bruising. There is no good reason.

Poor little Leo in hospital

Poor little Leo in hospital

Some have suggested that it was Gods plan that as we are a strong couple, we would lose a child so we could write about it and help others. Even those who aren’t religious have suggested that we were dealt this hand because we could and would cope with it, because we could turn pain into inspiration, that Leo would inform genetic research and help others. Those things are all true but they don’t justify the tragedy - they just make it bearable. People want reassurance that it was all part of some kind of plan, and personally I LOVE a plan, but all best laid plans can go to shit and sometimes, there is no rhyme or reason. And we have to deal with that.

We are brought up to believe that hard work and being good will pay off. That karma will bite you in the ass if you’re bad, but if you’re good, you’ll be fine. Unfortunately these motivational “strategies” just serve to bribe our own brains, and set us up for a monumental fall when things go wrong and our beliefs about how things are “meant” to work are shattered. When, our own prosperity plans fail us, when no amount of hard work or being a good citizen can save you, what happens then?

The thing is, when we knew Leo was going to die, we weren’t angry. We didn’t cry out and ask “why us?!” All we really felt was love. We felt thankful for the short time we’d had with him and for everything he’d taught us. His death broke our hearts and in an instant stole all of our “plans” - but even in the depths of our grief there was and is an overwhelming feeling of pride and love. And that’s what we carry with us. Not a set of reasons and justifications, just love.

Leo George Lewis NKH www.caribbeansnowflake.com

So no, some things don’t happen for a “good reason”. They happen because of a shitty biological lottery and two gene mutations in otherwise perfectly healthy people causing a terminal condition. Now we just have to figure out how to live with it and not let is crush our otherwise amazing lives. We don’t need special equations to rationalise why shit happens to good people in order to have hope. Nothing is guaranteed, so the best thing we can do is make the most of today.

Again, I’m going to turn to a Ted talk to explain all of this better than I can - this amazing lady is an inspiration who we can all learn from, but let’s all agree, she didn’t deserve or need this. And neither did we. Life is hard and life is precious, so let’s just do our best to enjoy its beauty when we can.