My 7-year-old daughter, Emma, died seven years ago from complications associated with Pantothenate Kinase Associated Neurodegeneration, an extremely rare and progressive neurological genetic disorder. Her 11-year-old sister, Alex, died of the same disease 21 months later.
I loved my daughters wholly, without exception or compromise. I was as prepared as any mother can be for the death of her daughters, which is to say that their deaths were anticipated and, still, completely devastating. Their deaths rocked my world, but somehow, against all reason, the sun continues to rise, and I keep living.
My grief has been a journey, the terrain ever-changing.
I started on an unmarked trail in the dead of night, it was unkempt and overgrown with unseen obstacles around at every turn. My husband was beside me, but neither of us knew the way. We forged ahead, stumbling clumsily along, our only comfort in knowing that God placed us together for the journey. In time and with attention, the trail widened and cleared. Over the years I have traveled down neglected back roads, overcrowded highways, and everything in between.
Today, I find myself on a quiet country road, maintained only by my faithful travel; travel that is loyal to the memory of my daughters while moving forward in hope. It is a quiet road, but not a lonely one. It is private and peaceful. There are shady spots to rest, where I sometimes sit and surrender myself to the depths of sorrow, but there are also open stretches where I open my arms, turn my face to the heavens, and welcome the warmth of the sun’s rays. There is happiness here, heard in the cheerful song of the birds in the trees and seen in clusters of wildflowers that grow in the sunlight along my path.
My road hasn’t been mapped and I give thanks for this place that is without parameters or expectations. When I am here, I am allowed to simply be and feel and live as I need to. My journey is charted day by day in the most intimate places of my soul. I can feel my children here and I find comfort in my memories of them.
This is where I sit in solitude, where I convene with my God, where I walk in quiet understanding with my husband, and where I sometimes bring my youngest daughter to play among the flowers.
While I never planned to take this trip, I have grown quite fond of the unexpected treasures that grow freely here.
This journey of grief is somehow lush with new growth and possibility without sacrifice of the beauty that was. I don’t understand it, but I give thanks for it.
If you are on your own journey of grief, I pray that you find solace and healing in the travel. Your road is all your own and I am so sorry that I cannot show you the way.
I know that sometimes the storms are so violent that the aftermath of mud and debris feels impossible to navigate. Droughts can be severe, roads can get crowded, detours can change your course, and darkness can be immobilizing.
This may be as close as our paths ever come, and, if so, I hope that my vulnerability offers you comfort and validation on your journey. If the day does come when our courses cross, maybe we will find that one of us has in plenty the exact thing that the other finds in short supply. Or maybe we will know that all we have to offer each other is a moment of quiet understanding in the shade and the wisdom that we are not alone.
And sometimes, that is exactly enough.
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