Today marks Good Friday of the Easter weekend, observed by Christians around the globe. It is hard to call the day a celebration, as it marks a death, one that paradoxically allowed followers to overcome death. Wrapping your brain around that one can be a bit….difficult.
My mother died on a Good Friday. So it seemed appropriate somehow that I provide my review of A Story Unfinished: 99 Days With Eliot, today. The tangling of emotions that comes when someone you love fiercely is tethered to this world in pain, and you know that death means a journey to heaven for them, but you cannot bear letting them go….this book speaks well to that, regardless if you are the parent or the child.
At 32 weeks into their pregnancy, Matt and Ginny Mooney were told their child had a genetic disease (Trisomy 18) that made his birth unlikely. If their baby lived, it would be for only hours or perhaps a few days.
Their journey is told by Matt, who had just begun law school in Fayettteville, Arkansas, when the couple found out they were pregnant. You can tell as you read the book that Matt also spent time in ministry, as his faith runs deep and wide, but he still knows that questioning is not renouncing faith, but rather, embracing the parts of belief that can be difficult to comprehend as a mere human.
Matt recounts the first months of joy and amazement at the life they had created, and then the excrutiating letdown that followed the prognosis of what Trisomy 18 might do to their child.
The couple opted not to know the gender of their child until it was born, and the moment as described by Matt is like any other pregnancy: complete delirium. It is obvious that their love is raw and deep, no matter what might come of their child’s birth – a few minutes, hours, days or even months.
Matt then shares the generosity of friends and family, including “Josh,” who literally slept on the floor next to their hospital room door; Heather and Paul, new church friends who agreed to take the entire journey with them; and the many who celebrated Eliot’s birthday every single day, making the monthly ones all the more special.
As a mom, I found myself tearing up several times. How can you not? It’s a parent’s worst nightmare to know that their child is sick and there is absolutely nothing you can do about it. There’s no money, no doctor, no treatment; nothing that can repair the irreversible damage done.
And so it is when anyone in your life is diagnosed with incurable disease. You have to try and reap the joy from every moment spent together, while delicately guarding your heart for the inevitable outcome. Matt recalls prayers of bargaining with God, offering his life in exchange for his son’s. And if you’ve ever been in that position, you know how utterly humbling that feels.
In the end, Eliot’s story is covered in joy, in celebration of the 99 days that he lived, that he touched lives, that he altered Matt and Ginny’s lives and marriage forever. Matt describes how his faith was increased by the journey, something that I found intriguing. To be honest, over the course of my mother’s illness and ultimate death, I found myself shaken in my faith, and it was comforting to read Matt’s words.
It was comforting to know that he was angry; that grief took hold in a way that he didn’t even recognize himself; the strain that their son’s glorious life and ultimate death had put on their marriage. In the many stages of grief, all of it applies.
But the beauty of being a human is that one day – one day you don’t even see coming – it’s not the first thing on your mind when you wake and it’s not the last thing on your mind before you sleep. One day, you realize that your life has moved forward, that your grief is still there, but not as tender.
Matt and Ginny share the story of their time with Eliot in a myriad of ways, especially with their 99 Balloons organization. My heart was touched by the sharing, and actually helped me with some of the grief questions I still wrestle with. God is always there, ready to listen, no matter what the challenge.
You can find more information on A Story Unfinished here; follow Matt’s blog, The Atypical Life; follow Ginny’s blog, Orbit of the Mooneys; read the history of Eliot’s blog; or find out more about 99 Balloons.