I spent most of my youngest daughter’s teen years waffling emotionally between fierce warrior and dish rag.
Somewhere around 12, she began having frequent headaches, followed shortly by episodic vomiting, followed by crazy neurological symptoms, followed by arthritic joint pain that came and went in a flash. I had no framework for what she was experiencing. I only knew it was turning me inside out, and there was nothing I could do about it. I’d smile in her face, walk cheerily into the next room and collapse. I begged God to let me switch places with her. Relentless internet searches became my nightly ritual.
The Diagnosis Journey
At some point, my dearest acquired a horrendous illness called Hemophagocytic Lymphohistiocytosis (If you say it loud enough, you’re sure to sound precocious.), which landed us before team after team of pediatric specialists who drew more labs than should be legal, and who ended up giving us an iffy treatment plan, and vague answers related to her prognosis. In brief, their treatment plan worked. Although recovery was long, it seemed complete. Seemed. Slowly, the original symptoms began to return, and so did the frequent hospital stays.
So began our journey into the world of invisible disease. After our daughter’s 15th birthday, we received a diagnosis of lupus (the ridiculously unpredictable, systemic kind), and came to understand that her intense out-of-the-blue symptoms were called flares. Since then, her platelets have dropped to the critical level twice and she has had her mitral valve replaced due to complications from an undiagnosed bartonella (cat scratch fever) infection.
God’s Faithfulness Through Suffering
In all, God has been faithful, as is His way. My daughter, now 26, is a stunning example of His workmanship—tender-hearted, kind, eternally compassionate, yet fierce in her defense of the broken. She and her husband work with the most abused of children.
This has been hard to recall and write. I have never considered our journey in such a tight package. It really was horrible at its worst, yet at its best (even in the midst of its worst), it has been holy, His presence palpable—thick, heavy, golden. At other times, not so much, but there was always a knowing that God was near, suffering with us. It has been helpful, and soul-soothing, to believe that God is who He says He is—that He is good, always, always good, and that He is Love.
I know now this dreadful and ongoing season is one of equipping. Nobody wants to be equipped thusly, but it’s what we do with it, I think, that speaks its Kingdom purpose. And somehow, that settles my heart.
Suffering Together with Others
In early January 2023, my best friend’s healthy 22-year-old son, a husband and new father, was diagnosed with necrotizing pancreatitis. Suddenly, his pancreas was dying and no one could figure out why. As his medical team wracked their brains and wrung their hands, his condition worsened—organ failure, lungs filling with fluid, confusion. They kept putting out fires, kept responding to crises, with no real plan.
One night, late, the Holy Spirit nudged me to send a quiet little text to my best friend, “You ok?” Somewhere within the next hour I understood, like a warm, deep, slow-moving river, the compassion of God, and the equipping of those He calls according to His purpose. I ministered to my sweet friend in a way no one else in her sphere could. I suffered with her, and she with me, which may not be the reason my daughter was stricken, but certainly eased the striking.
I still don’t know why it has to be us at this place, so I’ve put it on my list—you know the one: Things I Will Ask God When I Get to Heaven.
About Paige: Paige Tighe is a wife, mother, grandmother, writer, artist and storyteller. She is a lover of God, her family, and her country—in that order. Originally from York County, Pennsylvania, Paige landed in Pin Oak, West Virginia, via Baltimore and the Jersey Shore, picking up scattered seashells, prayers, bruises, skill sets, chickens, joys, a new brother, muses, colors, musical instruments, wisdom and gray hairs along the way. Her husband erects outbuildings to house her collections and provide her with places to putter.