[Ed: I’ve been sitting on this post for a few days. If the last one was scary to launch into the world, this one is terrifying. I have certainly gotten personal before, but writing about the progress of one’s own soul is… well, personal.
But necessary to finish what I started. So here goes.]
On July 7, 2016, I was alone in a hospital room with Oscar, shades drawn, lights off, trying and failing to coax him to sleep despite a mass of heavy wires attached to his scalp. He was in for a 48-hour video EEG to monitor strange jerky movements I had been seeing. By the end of that hospital stay, my suspicions were confirmed and Oscar was diagnosed with infantile spasms, a second seizure type far more devastating than his initial symptoms.
But on that particular night, as I rocked Oscar, I turned on the TV in the hopes of vegging out. Instead, I was met with live footage from downtown Dallas, where a manhunt was on for a shooter on the loose who had killed several police officers. I watched with horror, trapped between these global tragedies and my own personal tragedy, both unfolding like a slow-motion train wreck.
The sense of wrongness in the world had rarely felt more acute. In times like these, I often turn to music, and that night, I eventually turned to Audrey Assad’s album Inheritance. When the hymn “It Is Well With My Soul” played, I closed my eyes, leaned back, and soaked it in. When it finished, I played it again. And then again, throughout the long night’s vigil.
When peace like a river attendeth my way,
When sorrows like sea billows roll,
Whatever my lot, thou hast taught me to say
It is well, it is well with my soul.
I knew the outrageously tragic story that inspired this gorgeous hymn. In the late 19th century, a Chicago businessman, Horatio Spafford, lost his two year old son to illness. Shortly after, he lost his business and his fortune in the Great Chicago Fire. He planned to travel with his family to Europe, but sent them ahead while he stayed behind to settle some business accounts. The ship his wife and four daughters sailed on sank, and only his wife survived. He composed the hymn on his own Atlantic crossing to be reunited with her. Here, too, personal and global tragedies intermingled, and Spafford responded by doubling down in faith and composing a masterpiece.
This hymn became my 2016 anthem. In quiet moments at home, I would play it and weep. Whenever I was alone in the car, I would play it and weep. During tense moments with doctors, I would repeat the refrain like a mantra in my head. “It is well, it is well with my soul.”
Except it wasn’t.
I stumbled along through the rest of the year, building a shell around my soul to protect it from the emotional blows I had to withstand. Every month, it seemed, brought a new turn of the screw. At every turn, Oscar’s prognosis got worse. We faced serious health issues for several other children, as well as ourselves. My shell held. I functioned. But inside that shell was my true self: a veritable white dwarf of fury, gaining power and losing trust with each devastating twist in our family’s journey.
Outwardly, I maintained a strong facade. Inwardly, I was seething with pain, so twisted it was unrecognizable even to me. But other than a few outbursts—ranty emails that only my BFF received, entire days I did not get out of bed, misdirected stress rage at inopportune moments—I was coping. Sure, there were Sundays when all the strength I could muster was barely enough to get me out the door to Mass, where I sat grimly opining that all of “this” was utter claptrap. I was only here because it was the last refuge of the desperate; there was absolutely nothing that this Jesus dude could offer us to actually help. Sure, more than once I walked out ugly-crying in rage before Communion was over. But you know… I was totally fine. (See what I did there?)
I lived that year holding my shell together every time it cracked, adding duct tape here, shoestring there, but it was only a matter of time until the pressure was too great. At the Blessed is She retreat in April, the beginning of the end was the moment at the table when I was encouraged to ask “Where were you, Jesus?” But the end of the end was later, during Adoration, when another version of the song “It Is Well” was played.
The opening verses of the song talk about mountains being thrown into the sea, and keeping eyes on Jesus “through it all, through it all.” I was praying about Oscar, but really, I was praying about myself, my inability to stay focused on Jesus through it all, my brokenness, my lack of faith, my patched-up and rapidly failing inner shell. After the Spirit turned my attention to my own sorry state of affairs with the opening verses, the next blow fell.
The bridge begins with the phrase, “Let go, my soul, and trust in Him,” and I felt—viscerally felt—my shell crumble to pieces. It was as if I had been physically attacked, and I crumpled sideways, nearly falling to the floor, wracked with sobs. The friend kneeling next to me had to catch me in her arms.
The end of that song is a long, repetitive, chant-like chorus: It is well, it is well with my soul. As I listened, I surveyed the extent of my ruin, and I knew that my soul would not be well for a long time.
But when, in this crazy life of trying to homeschool six children and manage therapies and medical appointments, and oh yes, maintain a healthy marriage and family life and occasionally feed people something other than goldfish crackers… when, in the midst of this, would I ever have the time and space to pick up the pieces of my soul and put them back together in a way that would honor God? The shell was smashed to pieces, and that raw, tiny, angry soul living inside it had been fully exposed and brutally injured in the process. I lived the next month inside out, nerves open to the world and utterly raw. The pain of God’s absence was so excruciating that I became numb to it.
God flattened me because it was the only way to get through to me. He had to break through. But I resigned myself, in the weeks that followed, to the anguished slow burn. I would live with this crippled soul and try to love God with only its hard, sad littleness, while I pieced the shell back together one tiny chip at a time. All by myself.
I soldiered on, feeling like a hypocrite as I prepared for the trip to Lourdes. I undertook the pilgrimage almost as an act of blind obedience. I thought physical healing for Oscar would be great, but impossible. I thought spiritual healing for me would be great, but equally impossible.
When we left the baths that Friday, my dejection was complete. I felt like I had done the whole thing wrong, prayed wrong, acted wrong. And clearly, nothing had happened. Oscar was the same, and I did not feel any better. I had come to this holy place, sacrificed so much, and for nothing. I spent three hours awake in the middle of that night, wrestling with my angels and demons. I spent much of that time reading St John of the Cross’ masterwork, The Dark Night of the Soul.
I needed to actually surrender Oscar to God, physically. Giving ourselves up to the waters of Lourdes was the ultimate act of submission. I released his body. I released my pain. I laid down everything I had been using as a shield between me and God. My hands were open and empty. I knew there was absolutely nothing else I could do, say, try, or pray… and I thought that was the end of the story. But into that dark, unguarded emptiness, God could toss his tinderbox of mercy. The powerlessness and despair I felt that night were absolutely true and absolutely necessary.
It turns out, I am not in control.
Up until that point, I thought that the only way Oscar could reach his full potential was if I found the path forward for him… with God’s kind assistance. I thought that the only way my soul could be put back together was if I prayed the right prayers in the right order, read the right books, went to confession and Mass and Adoration enough times, hopped on one leg while spinning counterclockwise… while God nodded encouragingly in the background.
I forgot that I am only called to be faithful, not successful. I forgot that God blesses and multiplies our tiniest movements towards Him, in unexpected and wildly generous ways. I forgot that this is the God who hung the stars. I forgot that if He could breathe life into chaotic nothingness, He could breathe life into my dry-bones, dust-and-ashes self. I forgot that He is in the waiting, too.
Long story short: by the end of the pilgrimage, God had put my soul back together, in proper order, in four days flat. That is MY Lourdes miracle.
As with Oscar’s healing, it took me a few days after returning home to notice it, and weeks to realize the extent and solidity of it. A lot of that realization, you have been reading on this blog as it happened. And it is only this week that it has come to full fruition. Posting about Oscar’s healing miracle was my Pentecost moment. I have no fear for his future. Uncertainty, logistical questions, yes. Total awareness that more suffering is to come, yes. But I am not afraid, only bursting to tell everyone how very much God loves Oscar, and me—and every single one of you, every bit as much as us.
I know this now. I know this.
I often listen to music while tidying up and prepping dinner. The other day, the version of “It Is Well” from the retreat came on while I worked. I stopped to listen, and realized that I am no longer the person who crumbled to pieces during that song back in April. God has drawn beautiful goodness forth out of the rubble and ashes. He makes ALL things new, even the raggedy souls of beaten-down special needs mamas.
It is well, finally, with my soul. Let go, and trust in him.