Life offers few things that compare with the joy of a God-centered marriage. That kind of love preps the heart and mind to endure and grow with change—a reality that defines and sustains life. When Larry and I entered youth ministry, opportunities and challenges for our family life were abundant. For example, summers meant relocating to youth camp for three months. The varied significantly at different camps. Sometimes we caught rainwater in buckets in our bedroom; repaired sewer line breaks, and shared living space with tiny blood-sucking flies. Other camps were posh in comparison. All of these experiences, though unsettling, were precious opportunities to partner with God and be together in ministry.
Larry was good at what he did with the youth, and his heart was in love with God—and with me. From the day we met until his recent death, my heart thrilled whenever he came near, in part because I knew the feeling was mutual. Our love was deep, and it helped prepare us to endure what was ahead.
Never-ending responsibilities fast forwarding to California ministry, our three children, Tal, Tad, and Andrea, now completed our family, and we enjoyed the summer moves to Leoni Meadows Camp. Here, almost 100 college-aged staff members joined us in youth ministry. Larry’s ministry had grown to include larger numbers of junior campers as well as training and supervision of staff hired to serve those campers along with a host of other responsibilities. Time with my best earthly friend became less and less. From 5:30 a.m. to midnight, day after day, Larry’s work consumed him. Although he always made time for me and the children when I requested, I felt guilty asking, knowing the tremendous responsibilities he carried. One day when Larry walked into our cabin to check on his precious family, instead of the loving reception he anticipated, he came face-to-face with a seismic event. He must have thought I had gone mad with cabin fever.
That volcanic event resounds today in my memory. I can commiserate with the pressures mothers endure in ministry. At the same time, I regret having added to Larry’s load and concerns. Thankfully, our determination to remain in oneness with each other and with God helped us endure. This commitment, however, would meet its greatest challenge within several years after moving to northern California.
Differences in Tad
This trial first evidenced itself in our son Tad’s neuromuscular function. Instead of moving his eyes up and down as most do to focus their vision, he moved his head up and down (vertical gaze palsy). He began spilling his drink at mealtimes and tripping and falling abnormally.
On regular visits to the pediatrician, I mentioned these troubling tendencies. “It’s just an awkward stage,” the physician would respond. For
4 or 5 years this was the common evaluation. Only an enlarged spleen was detected as atypical. But our concerns grew steadily.
One summer while I was in San Diego for a funeral and Larry and our children were at camp, Tad tripped on the sidewalk. Not wearing the helmet we had purchased for protection, his forehead slammed into the cement. Larry rushed him to the hospital one hour away from camp, and he phoned to tell me what had happened. His deep concern was evident. I rushed to the airport.
When I arrived to the camp, I found Tad with two black eyes swollen so tightly he could barely see through narrow slits. He and I headed home to the Bay Area to see our family’s pediatrician once again.
Stunned with disbelief that this could be happening, I was speechless. Fighting back tears, I paid for the office visit in silence. Numb with fear that our son would be taken from us, I led Tad to the car and robotically drove home.
“Well, Tad, it looks as if you haven’t been kept in any too safe an environment,” the doctor voiced as he entered the examination room and proceeded to examine Tad from head to toe. I explained what had happened and again reiterated our concerns regarding Tad’s increasing awkwardness in movement.
Summoning a nurse to take Tad to the waiting room, the doctor turned to me and said, “As a physician in the State of California, it is my obligation to report suspected cases of child abuse. I must register a report.”
By this time, Larry had returned home from camp. Troubled by my account of the doctor’s visit, he immediately phoned the physician. I could hear only Larry’s side of the conversation: “For years we’ve been asking you for help. The problem
is getting worse. We want to see a specialist, NOW! No doubt you have our son’s interest at heart, but you’re not hearing us. Should we seek another pediatrician?”
The diagnosis
Within an hour the doctor phoned back with a bit of an apology and the name of a renowned specialist at U. C. San Francisco Medical Center. Over time Dr. Bruce Berg diagnosed Tad with Niemann Pick Disease (NPD)—a condition similar to ALS (Lou Gehrig’s Disease). Tad’s cerebellum was atrophying and creating a severe loss of neuromuscular control.
“This is a terminal condition,” Dr. Berg confided. “There is no treatment at this time. Very little research is being conducted because the condition is extremely rare. We cannot tell you how much time he has or how he will die. He could be walking down the sidewalk and expire abruptly, or he may linger longer with increased loss of tone. I am so sorry.” He continued. “We are here to support you and Tad as much as possible.”
Traumatized by this report, Larry and I secluded ourselves in an empty patient room to weep and try to regain our composure. How would we help 10-year-old Tad relate to death? What would be the best way to support
him and his siblings in dealing with this tragedy? A multitude of questions confronted us.
Wrapping me in his arms, Larry prayed, “Father, if ever we needed you, it is now. Our hearts are breaking with the thought of losing our son. The path ahead is one we don’t want to take. Most marriages end in divorce when something like this occurs. But we must be strong. We want to promise that, with Your help, we will not allow this to destroy our oneness. We promise You that we will do all we can to keep our family in Your circle of love and trust. Please help us withstand Satan’s attempt to destroy us with this heartless assault on our family.”
At that time, I was working on a doctorate in Language and Literacy at U. C. Berkeley. Stunned by Tad’s diagnosis, however, and eager to find something to help save our son, neuroscience became my focus. Attending neuroscience conferences, learning from Berkeley’s world-renowned neuroscientist Marian Diamond—I was consumed with anything I could find to better understand the brain.
Sadly, Tad passed away seven years later, just before his 17th birthday. We donated his brain to UCSF for NPD research. Today significant advances have been made in NPD study. Hopefully, Tad helped contribute to that progress.
The journey our family took with Tad created major changes for each member of our family. Why did God allow the suffering? Larry struggled intensely to understand why God’s promises in Scripture seemed to apply to everyone except us. For a time, he was angry with God, and he told Him so. “Why do You allow Tad to suffer as You do?” he asked as we prayed together. It seemed to Larry that God was deaf, for example, to his prayers for assistance in helping Tad get a good night’s sleep. Night after night, every 15-20 minutes, Tad would wake, choking and gasping anxiously for air. Either Larry or I would run to his rescue by lifting his chin and clearing his air passage. All three of us were drastically sleep deprived.
The morning after one particularly exhausting night, Larry and God had it out with each other. Thankfully, God won. He reminded Larry that He watched His own son die in order to save Tad and all of us. He had to endure that ravaging ordeal and His heart ached beyond our understanding. He had to allow sin to show its ugly face to help us better understand the cost of our redemption and salvation. Without this realization, the results of sin would not be understood fully.
After Tad’s death, Larry shared his sermon describing this struggle with God in many places in the U.S. and beyond. He explained this experience as one that drew him closer to God than any other experience over his lifetime.
Trying times
Andrea, though two and a half years younger than Tad, became one of his guardian angels years prior to understanding Tad was dying. It seems God gave her an extra measure of intuitive sensing. For example, while helping me in the kitchen, she would disappear abruptly just in time to find Tad at the brink of need or harm. Similar interventions occurred repeatedly. Today this intuition helps her as an exceptional neo-natal intensive care unit (NICU) nurse. (Ask her supervisors and they will confirm the accuracy of this motherly assessment.) As did Larry, Tal struggled deeply with losing his brother. For a time, he floundered. Dealing with typical teenage struggles on top of watching his brother decline was especially trying. He delayed completing his college education and experimented with various work endeavors instead. Finally, he decided to serve others by becoming a physician. Perhaps Tal’s exceptional bedside manner is in part a gift from Tad, as well as an innate characteristic.
God’s visits—Tad’s faith
told us he thought God or an angel had visited and comforted him. The first time was, while alone in his hospital room when he was diagnosed with NPD, a stranger briefly appeared at the end of Tad’s bed and said, “Don’t worry, Tad. Everything will be okay. I will always be with you.”
The other occurrence happened at school in his Special Day Class. Tad saw a stranger enter the classroom and sit down beside him at his desk. Neither the teacher nor the aide acknowledged this individual when they walked by. The stranger leaned toward Tad’s ear and spoke these words: “Tad, do not be afraid. Don’t worry. Remember, I will never ever leave you.” When Tad turned to respond to this assurance, no one was there.
One evening at bedtime when Tad was about 11-years-old—about the same time he reported having been visited by a heavenly messenger—I entered his bedroom to study his Sabbath School lesson with him before tucking him in for the night. Sitting on the side of his bed, he looked especially pensive. I sat down beside him and asked: “What are you thinking, son?” Quiet for a few moments, he then queried me, “Mom, where will I be buried?”
Though, at Dr. Berg’s suggestion, we had not told Tad he was dying, he seemed to know. I was not prepared for the heaviness of this moment. Holding him close in a one-armed hug, I opted for a bit of generality. “I’ve wondered the same thing, son—where will I be buried? Where we buried Gramma Smith in Pope Valley is one of the most beautiful places I know. That is where I would like to wait for Jesus to return. What about you?” I asked. For an extended moment, there was no response. Then, with a sense of calm and trust, Tad replied, “I’m going to let Jesus worry about that one.”
Tad was a true Christian soldier to the very end. His all-time favorite song was “The Battle Hymn of the Republic.” One rainy day after school, Tal and Andrea chased each other through the house as I prepared supper in the kitchen. Tad sat in his wheelchair watching them play. “Tad,” I said with empathy, “when we get to Heaven, I’m sure you’ll be able to run as fast as your brother.” “But, Mom,” he replied, “that’s not what’s important. It’s seeing Jesus that will be best.” With a hug and a smile, I applauded his wisdom and faith.
God’s pattern
As for me, this tragedy upended my professional focus as an educator. Before Tad’s diagnosis, as a reading specialist, I trained many teachers to help students struggling with reading difficulties—a work certainly worthy of much focus. Tad, however, led me to knowledge with an even broader perspective—one that now helps teachers better understand how the brain learns.
Because of Tad, my service to the church and Adventist Education became more extensive—nationally and internationally. NPD ushered me into university professorship with emphasis on neuroscience and learning. Even today, though recently retired, I continue to teach summer intensive courses for La Sierra University and guide graduate students in their research for greater educational effectiveness.
With each presentation I give on neuroeducation, I show a picture of Tad. This tribute acknowledges how his life empowered my work and studies. My research revealed a pattern God used when creating us in His own image. When honored, this pattern allows us to thrive as God originally intended. And it provides a model for brain-friendly education.
Blessings through the bad
Though NPD turned our lives upside down, it led us to a better understanding of God’s sacrifice for us on the cross. And NPD became a force for good though it stretched us to near breaking points. In these struggles to survive and rebalance, we grew stronger—not perfect, but stronger in faith. Similarly, our love for each other deepened rather than dimmed. God has ways to expand the dimensions of love through hardships.
Without flexibility to flow with life’s give and take, ours surely would have become one more number in marriages that fail under extreme duress. That vital pliancy was possible for us only through a determination to keep love and trust-in-God at our center. God joined us together as one—and with His help, our love survived. Someday soon, that special joy Larry’s presence always brought to my heart will come again.
Tad wanted to become a minister like his dad. In ways, this wish was fleshed out by his influence on each of his family members, and many others as well. I can hardly wait to see him again and for him to discover what his brief life yielded—even after he closed his eyes in rest until Jesus comes.
Tad’s gravestone bears some of his last words of encouragement and hope. It evidences his belief that ultimately endurance is worth the struggle: “It’s okay, Dad. Jesus will fix it someday.” To this beautiful expression of faith, I say, wholeheartedly, AMEN.
Reflection Questions
1. Linda starts her moving story by sharing a little of the business and the pressure of ministry. How can you relate to this and the impact of church/chaplaincy/school work on your marriage?
2. As a couple, have you experienced that “God has ways to expand the dimensions of love through hardship? Explain.
3. How do you respond to Tad’s words to his dad that his endurance will be worth the struggle?
Linda Caviness recently retired as tenured professor and chair of Curriculum and Instruction at La Sierra University’s Graduate School of Education in Riverside, California. Since retirement, she continues to mentor students in research and to teach as an adjunct professor and travel widely to present at churches, conferences, and professional conventions.