I never wanted to be in the club of child loss, but here I stand. If you are relatively new in my life or to my writing, please allow me the briefest of explanations before I share with you some thoughts on the journey of grief.
In 2002 Drew and I welcomed our first baby girl and we named her Alex. In 2005 we welcomed our second baby girl and we named her Emma. (Side note: approximately forty-three billion people named their baby Emma in the next few years, a fact which I still harbor slight resentment over, given that my Emma was named after my Grandma and everyone else’s Emmas seemed to come in the wake of Ross and Rachel’s TV baby. Apparently, nobody got the memo that I had full and sole claim to this lovely name and I never got the memo that other procreating humans can name their baby whatever they want to. I am flawed and I’ve never claimed otherwise.)
After years of unanswered questions, what was initially attributed to general developmental delay in Alex and Emma was ultimately found to be a very rare and progressive neurological genetic disorder. Both girls were diagnosed with Pantothenate Kinase Associated Neurodegeneration in the summer of 2009. Alex was six years old and Emma was four. The diagnosis was overwhelming, and the prognosis was grim. Life expectancy for this disorder can vary greatly, but all signs pointed to the fact that our girls were on the fast track. With the support of friends, family, our church, and our beloved pediatric neurologist, we did our best to face each day of our girls lives with faith and intention, prioritizing quality of life over quantity of years, knowing full well that the path ahead would be bumpy and uncertain.
In March of 2012, less than three years after the girls were diagnosed, Emma’s dystonia symptoms and Parkinsonism reached an extreme so severe that she was admitted to the hospital for pain management and symptom control, including full teeth extraction to prevent the dangerous and painful tongue biting that she could not control. So that you don’t have to look up this stuff up, let me explain. Dystonia is muscle cramping that can cause involuntary, painful movement and body distortion. Parkinsonism causes rigidity and tremors. Have you ever known a person with Parkinson’s disease? A parent or grandparent, perhaps? Can you picture how their bodies moved involuntarily, their muscles tense, rigid, and suffering through a near constant level of pain and discomfort? Now imagine a little girl with the very worst of these symptoms. It was horrific.
After weeks of extreme measures and two intense hospital stays, Drew and I knew it was time to focus solely on comfort and honor the DNR we had signed months before. Emma went to heaven eight days after her seventh birthday. It was my absolute privilege to bring her into this world and to be her mom. Holding her as she took her last breath was the most heart wrenching and holy of experiences. The memory of it draws me in, both gutting me and anointing me as I relive it.
Next week is Emma’s birthday. She would be 14, but she died nearly seven years ago. That means that we are approaching the moment in which she will have been dead as long as she was alive. My head has been aware of this unwelcome and unofficial milestone of mourning, but my heart hasn’t known what to make of it. Until now.
You see, 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 at every turn and haunting noises escaping from the thicket. Drew 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, seven years into the journey, I find myself on a quiet country road, maintained only by my faithful travel; travel that is loyal to the memory of my daughters (Alex joined her sister in heaven in 2014, just days after her 11th birthday) while still 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 depth of the sadness, but there are also open stretches where I open my arms, turn my face to the heavens, and welcome the warmth of the sun. 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 for that I have come to give thanks. This 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 what has come before. I don’t understand it, but I give thanks for it and I claim it as my own.
If you are on your own journey of grief, I pray that you find solace in the travel. Your road is all your own and I am so sorry that I can’t 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 picture that I’ve painted may be as close as our paths ever come and if that is the case then I hope that my vulnerability will somehow offer you comfort. If the day comes when our paths converge, perhaps we will find that God has given me in plenty the exact thing that you find in short supply. Or maybe we will know that all we have to offer each other is a moment of sitting in the shade together and the knowledge that sometimes that is enough.
