We love you, Charlie Gard, though we’ve never met.

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I’ve tried not to follow this story. In the fresh hell of my own grief, I can only handle so much external sorrow. It’s hard not to be aware of Charlie Gard though. And now today, his parents have decided to turn off life support and let him go.

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 that 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 that you know will seep away as soon as that machine is turned off, you have no idea. Until you realize that 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 that 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 that you are faced with this impossible decision. I am so sorry that you have 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, little Charlie. Find James and be his friend.

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2 thoughts on “We love you, Charlie Gard, though we’ve never met.

  1. This whole situation is so cruel. But what I still can’t believe is that courts were involved. That they arrogate the privilege of deciding about the death of this sweet boy. Why didn’t let the parents try everything to help their own child? It should have never been the desicion of the court. And now so much time has gone by in this causa that sweet Charlie had no chance anymore. That the parents couldn’t do anything else for their sweet boy but stop fighting and let him go.

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  2. As we prepare to approach the one year anniversary of my grandson’s death (from brain cancer at age 8) every word you say is true. I wept.
    We (his grandparents) were there at the moment he entered the world and we were there when he left. That said: As I watched Eli slip more and more away; no mobility, no speech, no swallow and finally no breath….it was somewhere in that hell, that I began to see that it’s possible for me as a grandparent to wish the unthinkable. I couldn’t imagine his life in that physical prison…so, I wished him free and so he is…. I will miss him and grieve his loss forever and I will meet him again…that I believe completely. My pain is mine and for my daughter and son in law…but Eli flies free.

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