Few people imagine or anticipate their life being full of severe pain. I’m referring to the kind of pain that follows you every moment, of every day, month after month, without an ending in sight. The type of pain that causes your life, as you once knew it, to cease altogether. The sort of pain that leaves you waking up every morning trying to figure out how to manage each moment so you can make it through the day, only to experience it all again the next day. The kind of pain that redefines a person forever.
I never anticipated experiencing this type of pain in my life…until it pierced me directly in the heart.
It was May of 2007. My husband Drake and I had been married for over 11 years and blessed with two beautiful children: Judson and Jessie. Our life did not look much different than the average family living in the states. Of course we had common challenges, but nothing out of the ordinary. At the time, Jessie was about 9 months old and Judson was almost 2 ½. Like every parent, we were extremely proud of our kids; Judson, in particular, was a very bright and articulate little boy with a sweet spirit who endeared himself to anyone whom he had the pleasure to meet.
However, at the end of May, Jud’s vibrant, normal-functioning body began to unexpectedly and rapidly deteriorate. Within just a few short weeks, Judson 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. I vividly recall the Neuro-Genetics Clinic where they sat us around a conference table and proceeded to tell us that Judson had a leukodystrophy, and from my research, I knew this equaled “terminal”.
I sat there holding my beautiful, bright, vibrant, beloved boy as he played with his green pick-up truck on the laminate pine table top and suddenly felt as though he was slipping through my fingers, and as much I tried, I could not hold on to him.
And for almost four months I continued to try to hang on to my boy…but he kept slipping through my fingers…Jud’s whole body became paralyzed including an inability to hold up his head. He went totally blind and mute. His swallowing reflex diminished. And though his keen mind and beautiful smile never faded, the critical functions in Jud’s body shut down, including his ability to breathe. On November 7, 2007, Judson slipped out my grip completely.
Looking back on that wretched day after the Neuro-Genetics Clinic, the word “terminal” had kept floating around in my mind. I recall sitting on the stairs of our house retching and throwing up as the thoughts of losing Jud plagued me. I couldn’t bear to let go of him!!! How could I possibly walk this path?!!??
But I had no choice — I had to bear it! I had to face the reality of the road being laid before me. I also recognized my desperate need to cling to the One telling me to trust Him, despite my circumstances.
Then something happened.
As Jud began slipping through my fingers, the fingers of my Heavenly Father intensified their grip on me. The Lord held me more tightly as I had to hold Jud more loosely.
I felt my Father’s grip through the notes, encouragement, prayers, gifts, meals, financial support and other unexpected blessings that upheld us in our tragedy. Even more profoundly, I experienced God’s presence in our little boy. God was clearly at work in Jud’s life as our sweet little man lived with incomprehensible joy during his suffering. While Judson could still speak, he regularly challenged us, comforted us, and spoke truth in a manner that revealed God’s nearness.
I have heard it said that losing is a child is one the worst human experiences known to man (and watching your child suffer compounds the pain). I know this to be true. I have also heard that even though I walk through the valley of the shadow of death, the Lord is with me (Psalm 23). I also know this to be true. Our lives are filled with an intense, pervasive pain having had to let go of Jud, but I am convinced God has not let go of me…and so it is to Him I cling!
Judson was born Christmas Eve 2004 and died November 7, 2007. Read more about Judson and the Levasheff family at www.StoryOfJudson.com.
Christina Levasheff has a BA in Communication and an MA in Education, both from Biola University. She is currently on hiatus from her work as a college educator to stay home with her daughter Jessie and to write and speak publicly about her journey.