When my daughter Cathryn was diagnosed with Ataxia-Telangiectasia (A-T), I got accustomed to hearing friends and acquaintances say, “Wow! I can't imagine what you're going through”—which is funny, because it's been years and I still can't imagine it and I went through it. Or should I say, I'm going though it? It ain't over 'til it's over, ya know? And how do I begin to define that “it?” What has “it” been like dealing with painful and difficult things on a daily basis? How do I begin to describe the grief, the numbness, the weariness, the relentlessness, along with the feelings of joy, peace, and assurance that flood our hours, often all at the same time? I do not readily talk about “what I'm going through” but believe me, I'm going through it all the time. It seems every moment I am keenly aware of my daughter's condition, its effect on my family, and the weight it has placed on my own soul.
I won't take time here to explain my daughter's disease. Read all about it at www.atcp.org. I don't want to minimize everything SHE has dealt with while I focus on my own struggles and concerns. She has suffered innumerable losses, yet her endurance has become an inspiration. When I talk about my struggles compared to hers, I sound like I'm filled with self-pity and conceit. She has certainly had a tougher time, and my father-driven wish that I could somehow suffer in her place sounds purely sentimental and worn out. It's true, though. I'd rather suffer than see her suffer. But we each play our different roles in God's drama. She's the sick one. I'm the dad who cares for her and the family. Deanna is the mom and the wife. We each have responsibilities before God. “Each one must bear his own load” (Galatians 6:5). I can't speak from her perspective, but I do have my own. I hope I never minimize hers.
We knew something was wrong with Cathryn by the time she turned 1. She was labeled as “failure to thrive” and we began looking at all the possible reasons. That search lasted 7 years and kept us living with a measure of uncertainty and doubt. What was her issue? Was it something we had caused or could have prevented? At age 8, we learned she was suffering from A-T, and though her condition was finally and accurately diagnosed, the uncertainty continued in a new reality: “Expect death in early adolescence.” At least that's what the medical book said, along with other great phrases like no cure, and no way to stop the degeneration, and the one that has proven so true: unrelenting. She turns 22 in a month.
“God is in this!” I knew. “He has His purposes. He will supply our needs and give us strength. Jesus will be sufficient for us; His grace will satisfy us, and we will give Him praise!” Such were my young and confident responses to the situation. I was going to lead the family to trust Christ through it all. I was up for the challenge and glad to have such a clear assignment from God. He had gifted us with a precious young lady. We would care for her in a way that brought Him glory and honor. We would usher her to death's door with victory.
It was all true.
But as nations learn when they head off to war, rhetoric and saber-rattling eventually collide with cold sober reality. Long battles and weary days test every resolve and every failure is magnified by the weight of life-and-death.
Some folks see difficulty though the lens of personal pain and need to learn how God is still good and sovereign over and through their affliction. Others, like me, embraced God's grace and sovereignty well before any real affliction came to test faith. What have I learned in the process?
I have learned that our wonderful God is good—STILL good, PERFECTLY good—and I can affirm my Savior's goodness with all my heart and still honestly say this whole journey has been unspeakably difficult, sorrowful, painful, and exhausting—physically, emotionally, spiritually, and relationally.
I do not betray the Lord or my faith in Him as I speak thus. The Apostle Paul himself said he was “sorrowful, but always rejoicing” (II Corinthians 6:10). He acknowledged the difficulty of sorrow and pain yet embraced the path to the sufficiency of Christ: rejoicing. These two conditions of the heart—sorrow/rejoicing—are not extremes to be experienced alone. They accompany each other and add weight and depth to each other. The admission that the struggle has been agonizing carries with it the recognition that future glory calls for rejoicing. It is beyond comprehension, rendering every earthly pain insignificant by comparison.
I found that it is not courageous to live dishonestly, to deny the level of difficulty or bury a struggle under cliché. It is best to acknowledge the reality and let it fuel faith. I wish I could say I learned this early and lived it long. But I learned it by experience and failure. Indeed, I am learning it.
Hence I'm beginning a series of blog posts. I plan to open up and share (to a limited degree and in an appropriate way) the struggles my heart has endured in the process of being a dad to a terminally disabled daughter and a husband to her mom.
I will explain how this journey has been a process of severe reduction, a boiling-away of selfishness to minimize me, humble me, and prepare me to be truly useful for God's glory. I've been over the heat a long time yet I see so much that remains to be boiled away.
I will chronicle my struggles with depression, anger, weariness, temptation, and loneliness. I will talk about how this disability has affected my marriage, my career, my finances, my time.
And as a final, necessary celebration, I will take time to reflect on all God has done. It will be my joy to give Him praise, because every difficult circumstance is used by Him to grow my character, subdue my arrogance, and prepare me for His purposes, both temporal and eternal.