Few people imagine or anticipate their life filled with severe pain. I’m referring to a pain that follows you every moment, every day, month after month, without an ending in sight. Pain that causes your life, as you once knew it, to cease altogether.
I never anticipated experiencing this type of pain in my life ... until it pierced me in the heart. It was May of 2007. My husband, Drake, and I had been married over 11 years and blessed with two beautiful children: 2-year-old Judson and 9-month-old Jessie. Like all parents, we were extremely proud of our kids; Judson, in particular, was a bright and articulate little boy with a sweet spirit who quickly endeared himself to everyone. However, at the end of May, Jud’s body began to unexpectedly and rapidly deteriorate. Within a few short weeks, he was losing his eyesight and ability to walk.
When doctors informed us they needed to do emergency testing because the situation was likely very serious, my heart broke; I realized my world could be on the verge of unraveling. I cried out to God in fear and anguish, but also recall specifically asking him to make his presence known to me no matter what lay ahead.
After weeks of testing, misdiagnosis and a steady decline in Jud’s abilities, we were given horribly bleak news. Judson was afflicted with Krabbe leukodystrophy, an extremely rare, genetic, incurable, terminal disease. In less than five months, Jud’s whole body became paralyzed, including an inability to hold up his head. He went totally blind and mute. He experienced painful spasticity in his limbs and his swallowing reflex diminished. Though his keen mind and beautiful smile never faded, the critical functions in Jud’s body shut down, including his ability to breathe. Our precious boy died in my arms just shy of age 3.
Although Judson has been set free from his affliction, our lives are filled with an intense, pervasive pain.
We are often asked, “Where is God in your pain?”
While the Lord is completely capable of removing painful circumstances and even honored when we cry out to him in our need, our Father never promised us lives without hardship. In fact, I am beginning to see that even though suffering is a result of evil and sin, it is also one of God’s greatest tools for drawing people unto himself. He may not promise to remove our pain, but he does promise to be with us through the valleys.
“How do you know he is present?” one might wonder.
I am reminded of an evening when Jud had been crying out in pain during the night. I went and kissed him, then laid my head next to his — face to face, just inches away. No words were exchanged.
Suddenly Jud got a very fearful look on his face and began to cry. Though his eyes were staring directly at me, he had no idea I was still with him. Judson was fully blind. He felt alone, scared and vulnerable. I placed my hand on Jud’s back and gently patted him; he immediately calmed and smiled. It did not diminish his pain, but he knew he was being cared for.
When faced with pain, are we often blind to God’s presence? Are there times Jesus is directly in front us, only “inches” away, and yet we think he is elsewhere?
Whether through notes, encouragement, prayers, gifts, meals, financial support or other unexpected blessings, our Father has been making his abundant love known to us through others. Friends and strangers alike have testified of being uncharacteristically led by the Spirit to reach out to our family. Though God has not removed our pain, it’s as though the Holy Spirit has encamped around our home, upholding our hearts in a manner that is otherwise inexplicable.
And most profoundly, God revealed his nearness to us through our little boy who lived with incomprehensible joy during his suffering. The Spirit of God was clearly at work in Jud’s life; before going mute, Jud regularly challenged us, comforted us and spoke truth in a manner beyond belief for a child his age. God was unmistakably present in our suffering son.
Of course there have been many times on this journey when I have also felt deeply alone, scared and vulnerable — unable to see God. But in those moments, it is as if he gently pats me on the back, reminding me that he is caring for me just as he promised.
Certainly I never imagined my life would include this kind of pain, but I also never anticipated knowing the grace and love of my Shepherd in such fresh and profound ways because of it.
Christina Levasheff (’95, M.A. ’98) was a resident director at Biola from 1996 to 2001. She is on hiatus from her subsequent work as a college educator to stay home with her daughter, and to write and speak publicly about her journey.