I just finished listened to Learning to Walk in the Dark by Barbara Brown Taylor. It was an interesting read in which Taylor explores our discomfort with the dark. She studied the dark in many different ways, from exploring a cave to participating in a simulation of what it is like to be blind, and shared what she learned about herself, about God and about the world in the dark. In this exploration of the dark she inevitably encounters light but in new and different ways than we may be accustomed to. At the end of the book she writes, “Do I want the kind of light that shines on things or shines from them.” I haven’t been able to get that out of my head. On or from. A simple preposition but it makes all the difference. I don’t know if this is what she intended, but my first thought was in regards to people, specifically Will. Light shone from him. There was an undeniable quality about him that I can’t quite name but something about him could only be described as light. Good, pure, innocent and bright. I started thinking about people who shine light from within and when I really got to thinking about who I know that possesses that unspecific quality of inner brightness I could only identify a few. Then I started thinking about what those few have in common, what it is that makes them shine light from within. Maybe it’s joy. Maybe the people who have the most joy somehow spill it over to all of us and that joy hits us like headlights on a dark night. Or perhaps it’s strength. The ones who are strong and incorruptible might beam their light upon us by showing their might. It could be the generous ones. The ones who are always giving, thinking of others above themselves and letting the generosity that lights their hearts on fire pour over into the lives of those around them. I think it might be these people, they might be the ones who shine a light from within - the joyful, strong and generous. But I think the brightest ones, the ones who exude the shiniest light with the most consistence, are the grateful ones.
We sing a song at church sometimes called “So Will I.” It’s a beautiful song and for some reason it makes me think about Will every time we sing it. I imagine him in Heaven with this magnificent God described in the song. One of the first lines in the song is “You spoke to the dark and fleshed out the wonder of light.” God made light out of darkness when He created the universe and I believe he is creating light out of darkness again right here before our eyes. Having sick children, holding Will in my arms as he took his last breath and every day after that has been dark. But God. But God has made it into light. Will’s light shines into the hearts of every child we have the opportunity to impact. God is using what could steal our joy and destroy our gratitude for something that honors and glorifies Himself. More people will know about Jesus because they know about Will. That’s my hope anyways. The end of the song goes like this:
And as You speak
A hundred billion failures disappear
Where You lost Your life so I could find it here
If You left the grave behind You so will I
I can see Your heart in everything You’ve done
Every part designed in a work of art called love
If You gladly chose surrender so will I
I can see Your heart
Eight billion different ways
Every precious one
A child You died to save
If You gave Your life to love them so will I
Like You would again a hundred billion times
But what measure could amount to Your desire
You’re the One who never leaves the one behind
I don’t think there is anything I could write to describe how I feel about Will and what God is doing through his life better than those lyrics. I can see His heart in everything He has done. Every part a work of art called love. If He surrendered His life for mine, I will surrender mine for His glory. It might not look the way I hoped for or desired. I would gladly hand everything back if I could just have Will with me. But this is where we are, a path intended for evil that God is using it for good and I will be grateful. It comes with pain and heartache and loss over and over again. Every single day. When I look at my children, His children, the ones who He died to save from an eternity apart from Him then I can see clearly, knowing what is good and pure and light. “Go therefore and make disciples of all nations” (Matthew 28:19). ALL. If God has given us a light that shines from within us then we are called to shine that light on all people. With joy and strength and generosity and gratitude we move forward, one day at a time, missing Will but striving to remember the light he had within and letting it energize us to do all that God has called us to.
My city smells like burnt coffee. This city has been my home since I was ten years old. As a teenager I used to run before the sun came up and inhale the familiar smell wafting over from across the river. At 5am, a group of avid cross country runners from my high school team would meet on the side walk in front of a red brick church in my neighborhood. We would run the same course, same distance, every single Tuesday morning. Through the quint and quiet neighborhoods, down to the river walk and past the restaurant where my friends surprised me for my sixteenth birthday. We rounded the giant fountain, weaving our way through the parking lots of downtown and up to the children’s hospital. We stopped there at the corner to regroup. The fast runners stretched and jogged in place while the rest caught up. Once we were together again we ran as a pack to cool down all the way back to the church. As a teenager I knew it as the place where I took a break, a marker of where to stop and wait. While I stretched, above me there were hundreds sick children. I had no idea. Later, as a mother, that same spot also served as a marker but in an intensely different way. That hospital now marks the place where the greatest tragedy of my entire lifetime occurred. It marks the place that saw me at my very worst, broken and devastated. It marks the place that changed my life forever.
All those times that I stood there at the corner, I remember the lights glowing from inside curtained cover rooms, seeing nurses arrive to their twelve hour shifts and watching doctors who had worked all night walk to their cars where they could finally sit down for the first time in hours. I saw it from the outside but had no idea what happened on the inside. I honestly never even thought about it. I didn’t know about all of the pain, the suffering and the unbearable realities of sickness and death that lived inside that building. I also didn’t know about the miracles that were happening behind the walls I placed my hand on for balance as I stood on one leg, stretching the other. I didn’t know that it was a place full of hope, full of love and full of people who offer deep compassion and extraordinary care for sick children. I didn’t know that the doctors and nurses that I saw walking to and from the parking garage, either arriving or leaving their long and exhausting shifts, had spent the last twelve, fifteen or twenty four hours witnessing unimaginable grief as well as precious miracles. Some of them may have delivered a terminal diagnosis to a child just hours before. Some may have witnessed a miracle over night and watched a baby live who was supposed to die. Some may have watched a mother hold her child as he or she took their last breath. Some may have taken care of a baby who had been abused or sat with a child who had spent more of their life inside those walls than outside.
I didn’t know that one day, inside that very building, I would experience life and hope and miracles. I didn’t know that I would spend many nights on the couches inside it and shed gallons of tears in the parking garages, elevators, hallways and rooms behind those sliding glass doors. I didn’t know that the same year that I was waiting outside that hospital, a very special doctor was establishing an organization that would help hundreds of children from all over the world receive life-saving heart treatment. I didn’t know that one day I would be deeply connected to that doctor, that organization and the mission being developed and created inside those offices. I didn’t know that in that building I would hold one of my own babies as he entered into eternity. Even in my worst nightmares, I would have never imagined that my life would someday include the heartbreak and pain and sorrow marked by that place. How could I know? In 2005 it was just a stopping point, a place where I waited until I could keep running. In 2018 it was also a stopping point. A place where my son’s life stopped here on Earth. In 2018 it was also a place where I waited. I waited for test results and diagnostic reports. I waited to see if my babies would live to the next day. Thirteen years ago, I stood outside the building, barely noticing the place that would one day become intertwined with my life in the most intimate ways possible. That place that glowed in the muggy night air as I ran past, breathing in the smell of burnt coffee.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!