Christmas carols have been a welcome comfort during Valor's nearly two-week hospital stay. Meditating through song on Jesus' humble, innocent, endangered and hopeful birth has resonated deeply with Valor's current situation. One night as Brandi and I sang "Oh Little Town of Bethlehem" around Valor's hospital crib, a particular line resonated. "The hopes and fears of all the years are met in thee tonight."
"Hopes and fears." Infection is an ongoing danger for Valor due to his low white blood cell count. Several days into Valor's stay at Duke Children's Hospital, as I changed his diaper, I noticed a lumpy white object attached to the side of Valor's penis. I cleaned him off with a baby wipe as he cried, but the white object remained attached. On the next diaper change, the white object was still attached and now his penis was swollen and red in the area around the white object.
I began to panic. "Valor was developing an infection. He would go downhill quickly. This could be the beginning of the end." We notified a nurse that he was at risk of infection, which seemed to be developing. The nurse notified a doctor. The doctor came to examine Valor...
After a few minutes, the doctor pulled a white diaper particle off Valor's penis, and applied Vaseline to the irritated area. Within a couple hours the white object and the redness were gone. There was no infection.
But God did use the diaper particle to expose a different infection. My fear. Panic and over-reaction raced through my heart with ease because fear about Valor's health and future had taken deep root in my soul. Silence only made the fear stronger.
That night I asked Brandi if we could try the Biblical practice of confession, speaking aloud to each other and to God our fears about Valor, and seeking God's forgiveness and freedom together. She agreed. We each got a piece of paper and began to make our list:
Brandi's Fears: Valor's death now or before I die; his illness turning into cancer; infection that won't heal; not getting to live a full life; not growing like normal; siblings will resent him; his condition will take us away from our other 4 kids; releasing him into the world when he is an adult--will he care for himself the way we have; allowing others to care for him; spreading my germs to him; something happening to me, our other kids or Elijah; I will fail to clean well enough to keep germs from him; he will resent his condition and his body; something will happen and I won't be able to help him; when things start to feel normal I'll wane in my vigilance to protect him; division in our marriage; Valor will have anxiety and fears due to hospitalization and trauma related to his condition; he will be mentally or physically impaired or undeveloped.
Elijah's Fears: Leukemia; early death; fever or infection; other sick people; doctors visits; losing my freedom; suffering; prolonged death; pain; smallness; no growth; phone calls; hospitals; crying; germs; losing time; other siblings will be forgotten; paralysis and loss of routine; having to bury Valor; not getting to hold him and see him grow up; isolation for Valor and us; not getting to baptize Valor; crying every time I preach; division in our family; Valor not eating; 1 of our older 4 kids getting sick or hurt; the future; lost family vacations.
We cried listening and we cried confessing. But afterward something shifted. As heavy and daunting as these fears were, confessing them out loud in the presence of God and asking Jesus to take our fears to his cross released some of their power over us. We are still in the hospital. I still wake up some nights in panic. Valor's suspected diagnosis hasn't changed. But the deep roots of fear choking the life out of our heart were looser. Confession to Jesus was setting us free. A white diaper particle was no longer sending me into a tailspin. Several days later we dared to confess our hopes.
-God's Hope, Elijah Lovejoy
Meet the Authors: Elijah & Brandi Lovejoy
On March 15, 2019 nine days before his 6 month birthday, our son, Valor Emmanuel Lovejoy, entered Duke Children's Hospital for the second time with a recent fever, low white and red blood cell counts and a below 1% weight chart gain. Doctors suspect Valor has Shwachman-Diamond Syndrome, a disease that effects bone marrow health, pancreatic function and sometimes skeletal structure, among other symptoms. You can learn more about SDS here: www.shwachman-diamond.org. I (Elijah) am a pastor, and I (Brandi) am a volunteer Children's Ministry Director and home school mom to our five children.
These Chronicles are written from a Christian perspective in the spirit of 1 Corinthians 11:1, "Follow my example, as I follow the example of Christ." We believe the Lord does his best and deepest work through profound patterns of death and resurrection, particularly as pioneered and embodied in Jesus Christ's own death and resurrection. Through faith and ongoing participation in Jesus' death and resurrection, we offer these Valor Chronicles in hope that others will find comfort, hope, peace and resurrection life with us in Jesus.