On Charlie Gard and his family

Edit: 

I didn’t realise today would be the day, so this is a terribly timed post. Oh Charlie. Fly high little guy, you’ve touched millions of hearts worldwide, you were well loved. You will be so missed.

x

——–

I’ve mostly kept my tongue about Charlie and his parents (apart from that one misguided and horrific sun piece, but even then I was throwing my support their way).

I’ve held my tongue because none of us can know what it’s like for them. Not even us, with Kai having spent so many weeks in intensive care, and in hospice on end of life care. With his seizure coma and on a ventilator being told he may die. Not even with our own horrid genetic and terminal disorder. We’ve lived through the horrific. Just in case you wondered what that time for us looked like…

We lived through the horrific. We continue to live through the horrific. And the worst is still to come. 

And yet, our story is not their story. Our lives are not theirs, and our decisions aren’t theirs either.

So many people have condemned Charlie Gard’s parents for doing what they do. I’ve seen comments about how they should always be at his bedside, or should have fought harder at court, or should have let Charlie go earlier. I’ve seen and heard comments that attack their characters, that talk about dignity and death in the same sentence. That talk about quality of life like they know what that means for Charlie. I’ve seen comments about the hospital, and their staff. I’ve seen a lot of judgemental and unnecessarily hateful comments.

Shame. Shame on anyone who thinks even for a second they know what Charlie’s parents should have done. Who thinks even for a second that this family deserve any kind of judgement, any kind of passing comment.

They’re just parents, hey. They’re just doing the best they can for their child they love.

Their best may be different to your best, but that’s okay.

Worse, the least empathetic comments I have seen have come from special needs parents. Parents who have spent time in intensive care. Who have faced end of life and hospice and saying goodbye.

Truth is, how we face those horrors is our own personal nightmare. None of us manage in the same way. None of us can truly know what it’s like for Charlie’s family. When we were in intensive care facing everyday was filled with shock and emotion and grief and hope. Nothing was straightforward, everything was hectic and crazy and we spent a lot of time trying to balance what we hoped with what we knew and what we were being told. I can’t for a second imagine what it’s been like for that small family. Add in the media and the court case and the judgy public, it has to have been 11 months of an insane emotional rollercoaster.

I also feel like we were given a sliver of their life. Just a tiny peek.

Enough to know that compassion and sympathy should be the first port of call, enough to recognise this family is on a very different path to the one everyone else is on. We don’t need to stand on our little soap boxes and point down at them, they’re already living with their decisions. They’re already in a world of grief and hardship.

Let’s not kick them when they’re down, hey. We should be better than that.