This week the world mourned the loss of little Charlie Gard. As I watched the grief-exhausted faces of his parents I reflected on the journey that is grieving for your child.
We have a stunningly beautiful, amazing little man with a genetic disorder that severely limits his choices in life. And I remember how a few years ago, when “experts” told of us these limits our first reaction for pure rage. I find that parallel with Connie and Chris: your grief morphs into rage when you’re backed into a corner and you lash out at those who mean well for your child but may not have the skill to show their empathy. And you clutch at anything that has close semblance to a straw to protect your child from what you have not yet accepted as inevitable.
This rage is an amazing thing and it pushes you well beyond what you thought were your personal limits. This rage allowed Charlie’s parents to raise millions of dollars and now almost everyone with a working Internet connection knows something about an extremely rare genetic disorder. Perhaps their rage might help a breakthrough medical discovery that goes on to help future Charlies.
But this rage is also something that consumes you. And when you emerge at the other end of this immense anger you are a person your old self won’t recognize. Of course having children changes us. We all become the people our children need us to be. But having a child with a life altering, life-limiting condition changes the parent, it breaks you down and build you back up from scratch into this fighting machine for your child.
Once the rage burns out, the grieving journey brings you to a place of peace. For Charlie’s parents I hope with all my heart they get to their place of peace soon. This peace gives you a lot of clarity on the past. And you can then see that all those whom you hated with a vitriolic passion, who embodied all of the injustice fate and the system with doling out to you, those people were actually right. Yes, they could’ve done things a bit differently and they could’ve said things a bit differently. But in the end it would not have affected the outcome. And you also see how they did have your child’s best interest at heart.
With peace also comes acceptance. Now that we have made our peace with our child’s disability we find ourselves enjoying his version of life more than we ever did when we raged against the world on his behalf. And when they reach this place of peace, when they find it in themselves to let go of the rage, Connie and Chris will find themselves with all the beautiful memories they made as a little family before illness and hospitals and courtrooms took over their existence.
With all my heart I wish them this place of peace and rush them on their journey of grief.
Written by British mum, Zara Awan
If you would like to write for British Mums we would love to hear from you. Please email us at firstname.lastname@example.org
Photo Courtesy of The Sun Newspaper – Charlie’s Fight