"Honey, I have the name!" my husband announced boldly coming in the door as I stood 6 months pregnant. He wanted to name our fifth child "Valor Emmanuel," meaning "courage" and "God is with us." I wasn't a fan. "It would definitely be the most unique name of all our children," I said with a forced grin. For the next several weeks, I offered alternative names hoping one would stick. They all fell flat, not just with Elijah but also with me.
When I filled out Valor's birth certificate paperwork weeks before his birth, I slowly began to accept the name. Early on the morning of September 26, 2019, with this newly born 7 lb 14 oz baby boy screaming on my chest, Elijah pronounced his name again: "Valor Emmanuel," and it just fit. We had no idea then how well it fit...
On January 21, with Valor just shy of 4 months, I took him to his pediatrician with a low grade fever, cold symptoms and two inflamed bumps on his thumb and abdomen. Valor was fatigued and pale. After ruling out flu and ear infection, the doctor ran a blood test. She returned and calmly told me Valor's white blood cell count was very low. I needed to go to the hospital right away by ambulance. Valor was weakening.
Valor's blood work mystified doctors at our local hospital. They consulted with Duke Hospital's pediatric hematologists who recommended a transfer. Soon we were on our second ambulance--to Duke. After several days, joyfully, Valor's blood work began to recover on its own. The doctors diagnosed a virus and concluded it was suppressing his immune system. Once the virus was gone, Valor should fully recover. To give his sluggish red blood cells a boost before returning home, he received his first blood transfusion. Valor was strengthening.
Two weeks later, Valor's blood work was deemed "recovered." "Could this happen again?" I asked the hematologist. Shaking her head, "Not likely. If a pattern of illness emerged, then maybe he has something else going on, but that is very rare." Valor would be strong.
On March 14, after two days of low grade fever, sleepless nights and mild cold symptoms, we returned to the pediatrician's office to discover Valor's blood cell counts were dropping again. Déjà vu was setting in. Valor was weakening.
Within 36 hours, our local hospital transferred us back to Duke. After Valor's fluctuating daily blood counts continued causing mystery, an attentive hematologist, who "stayed awake one night thinking about him," ordered a bone marrow biopsy. The results confirmed our emerging fears. Valor's bone marrow was only producing 60% of the blood cells he needed. His weak bone marrow biopsy combined with his difficulty digesting food and his "failure to thrive" growth diagnosis likely pointed to Shwachman-Diamond Syndrome, a currently incurable genetic disease.
As we've ridden the roller coaster of strength and weakness with Valor, several questions have pierced our soul. Will Valor be frail and at risk the rest of his life? Will we, his parents, always be sad, waiting for the next round of bad news, the next hospital visit? Was naming our son Valor Emmanuel a mistake? Are his name and his diagnosis a walking contradiction in terms? Obviously the sentimental answer is "no." But is there more than mere sentiment to hope in?
Reflecting on and seeking to be free of his own weakness, the Apostle Paul reaches a surprising conclusion. "For the sake of Christ, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong" (2 Corinthians 12:10). In other words, this moment of weakness is Valor's strongest hour. We and Valor are closer to Jesus in our current faith-filled sufferings than at any point in our care-free life to date.
This is not wishful thinking or happy talk. Paul sees death, suffering and tribulation as necessary pit stops on the way to glory, power and resurrection life in Jesus' death-then-resurrection economy. Jesus himself describes our attempts to save, preserve and guard our own life, wealth and comfort apart from him as sure signs our life will be lost (Luke 9:23-25).
We didn't seek this tribulation out and we wouldn't wish for it. But we are "content." We know how Jesus' economy works. God is using Valor to teach many to be courageous warriors in His kingdom. God's Strength, Brandi Lovejoy (with a few thoughts from Elijah thrown in)
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.