Most of us share the basic human desire to escape pain. It is weeks like this one that illuminate the desperate attempts my mind makes to transcend my own.
Our HIE community was shaken by the passing of 3 of our children over the last week. This unbelievable loss has thrust me hard back into the all-consuming grief of the medically complex journey.
Whether or not we talk face to face, this incredible group of people has become my family, navigating the trials and tribulations of this complicated life together. Side-by-side we extend our hands when another stumbles. We are bonded through unspeakable tragedy and our bravery is bolstered by these bonds.
This week I’ve felt as if I am walking through a battlefield, the mortar shells of our collective trauma raining down upon us. I watch my brothers and sisters fall and my heart breaks as I am powerless to help them.
So I turn my tired tear-filled eyes toward the future and continue trying to hold onto the Hope that quickly sifts through my fingers. Making a half-hearted attempt to continue my life as I fight the suffocating feeling of the lump in my throat that just won’t go away.
I navigate this human world as a zombie, struggling to reign in my mind as it runs to far off places, fantasizing about a life free from this depth of anguish. It takes me back to the jungles of my youth, where I would dance the night away under a big black sky, dropping the weight of the world and merging as one with the music. I want to run back to this time, seeking shelter in my vices.
But I can’t. I won’t run from this. I will stay still and feel it.
There is no control on this HIE journey. It is a wild beast with a plan of its own and we are merely along for the ride. The longer I travel on the back of this untamed creature, the more deeply I embrace the lesson that acceptance is the only path to peace.
So I continue to work toward that.
May the ethers bring peace to the families whose children have gained their wings. May they fly high, free from the pain they endured on earth and be forever free to run and play among the stars.
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