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We Love You, Charlie Gard, Though We Never Met

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I tried not to read about Charlie Gard. In the fresh hell of my own grief, I couldn’t handle watching his poor parents struggle through the court of public opinion. I could not watch the social media lynch-mobs forming and listen to the armchair activists in all their “wisdom.” In the end though, I wasn’t able to avoid his story. It carries so many parallels to our own — to the story of our son, James, and his short life.

I’m not here to write about socialized medicine. I’m not here to talk about experimental drugs, mitochondrial disease and parental rights. I’m here to simply say this: anyone who thinks they know what they would do in that situation is foolish. I’ve seen the mud-slinging, the casual cruelty about his parents and their prolongation of Charlie’s life. I’ve seen the judgment and I’ve heard the sneers.

I’ll just tell you these things:

Until you sleep curled around your dying child in a hospital bed, every bone and muscle crying out for a good night’s rest — you have no idea. Until you hold your dying child’s hand, feeling the warmth you know will seep away as soon as that machine is turned off — you have no idea.

Until you realize you are looking into your child’s eyes for the very last time, until you have to say the words to the doctors, the words that will end your son’s short life — you have no idea.

Until they come into your room with syringes to “make your son comfortable” as he slips away, and you are fighting the impulse to start screaming over and over and over, and the panic is creeping into your very core because your son is going to die right then — you have no idea.

Until you close your eyes every single night and relive those last, precious hours, until you watch the videos of his last day over and over and sob yourself to sleep because you miss your baby so desperately — you have no idea.

Until the day I die, I will question. Until the day I die, I will wonder what my son would look like now. Until the day I die, I will wonder what if, what if, what if.

For those in the medical field, often the answers seem black and white. I know this. I was once one of those black and white people. I am no longer that person. To those who love their children, the answers are always shades of gray; the future shadowy, unforeseeable. There is always the what if. The guilt we carry as a result of our decision will never go away.

Look at the picture I put with this post. Do you see that? That’s my baby boy as he died. Do you see the agony imprinted there on my face? It’s always with me. It’s always with me.

To the Gard family, I am so, so sorry you were faced with an impossible decision. I am so sorry you had to say goodbye to your beloved child. I have been there, and I know the agony of the decision, and the agony of carrying that decision every day since. I am sorry, so deeply, deeply sorry.

Rest in peace, little Charlie. Find James and be his friend.

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Originally published: August 10, 2017
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