We are celebrating a small victory this week. Valor appears to have caught and fought off a cold for the first time. His hematologists said this would happen occasionally, but it hasn't yet. Every runny nose has become a multi-day hospital stay and blood transfusion, until this week.
As Valor's eyes drooped, energy faded, smiles waned and nose began to run, we looked at our calendars. What needed to be cancelled to make room for this week's imminent hospital stay? What emotional preparations were required? By the fourth tour of care, muscle memory and emotional battle-testing are fairly developed.
Testing has become a theme, too. Peter considers grievous trials and the testing of our faith more valuable than gold, so that we will receive "praise and glory and honor at the revelation of Jesus Christ" (1 Peter 1:6b-7). Paul considers "persecutions and afflictions" God's righteous means for discerning our worthiness of his kingdom (2 Thessalonians 1:4-5). Even Jesus was battle-tested by suffering to prove his worthiness (Hebrews 5:8, Revelation 5:12).
Testing is both familiar and strange. We stress-test our bridges and banks. We value battle-tested soldiers to lead in combat. Yet to speak of battle-tested civilians or the importance of being stress-tested by God (as Peter & Paul do) is discomforting, even bizarre.
Why the disconnect? We view bridges, banks and soldiers as serving larger purposes beyond themselves. Can this bridge hold this many cars? Can this bank survive another financial crisis? Can this soldier remain courageous and calm under fire? The only way to know is to test. It would be cruel not to. The goal is not shame, failure or pain. The goal is preparation for a purpose and remediation for that purpose if the person or thing fails the test.
And there's the disconnect. We don't view ourselves as serving someone's greater purpose beyond our personal self-fulfillment. So the thought of God testing us for our role in his eternal purposes doesn't even compute. Bridges need testing. We don't.
A couple days into Valor's snotting nose and dissipating smile, it happened. He started to recover. For having an incurable genetic disease, ironically, Valor is the strongest of our 5 children at this age. He would easily rocket from our arms if not held tight. When he's not well, it shows. When he recovers, that shows too. Slowly his eyes grew brighter. His smiles waxed. His nose dried up, and our laps returned to the miniature trampolines they were.
We're not sure what God's eternal purposes are for Valor or us. We don't know why we're going through the tests we are. And we don't know what the future holds. But today we are surprised by strength. God's Strength, Elijah & Brandi Lovejoy
I didn't realize I was struggling with despair until I sat to write this blog. Writing will do that. I've faced death and resurrection before. I've claimed Paul's life-or-death-prison-meditation-win-win scenario for myself, "Christ will be honored in my body, whether by life or by death" (Philippians 1:20b). I've come to believe in the personal cyclical nature of death-then-resurrection with Jesus as strongly as I believe anything. I've even written a book about it.
But having hope for my 8 month old in the face of an incurable genetic disease feels harder than finding hope in my own death-then-resurrection pilgrimage through professional failure, 9 years of infertility and intensive marriage counseling intervention.
The numbers don't help. Valor was officially diagnosed with Shwachman-Diamond Syndrome (SDS) last month after his genetic test results returned from Cincinnati. He had a 25% chance of inheriting both mine and Brandi's mutated SBDS gene. Pancreatic insufficiency, one of SDS's hallmarks, has a 50% chance of self-correcting at age 5. The doctor considers Valor's self-correction unlikely, since his case is severe.
With age, the greater threat becomes accelerating bone marrow failure and associated diseases, which are the primary cause of the current 35 year life expectancy in SDS patients. Bone marrow transplant is a medical last-resort option. The mortality rate of this procedure is 30%. Gene editing, a treatment still being researched, is a possible future cure.
Like a broken algorithm, my thoughts and emotions run this numbers gauntlet with unsatisfactory results. Should I treat Valor as fragile, fearing his body's weakness? Or encourage Valor to play in the dirt like his siblings. Should I hold Valor loosely from emotional self-protection? Or hold Valor tight hoping to beat the odds? Should I reduce my expectations for a fruitful life waiting for the next multi-day hospital stay and blood transfusion? (He's had three so far.) Or is there another way to live besides waiting for heartbreak and death?
Yesterday Valor and I sat in the shade watching his older 4 siblings swim at Cliffs of the Neuse State Park, while mom took the day off. Whether it was the gentle breeze, the beauty of God's creation or just unplugging for weekly Sabbath, an old but fresh thought slipped into my soul.
Despair has a purpose. St. Paul discovered this in one of his myriad near-death experiences and wrote his beloved Corinthian church about it. "We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead" (2 Corinthians 1:8b-9). Despair is a teacher. The limits of self-reliance, her program of study. God's power to raise the dead, her summa-cum-laude prize.
And it's not just a future-oriented power. Paul boldly lays claim to God's resurrection power in the past, present and future. "He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, as you help us by your prayers" (2 Corinthians 1:10-11a).
I'm not sure how God's power is going to deliver Valor and us. But it won't be through my love of strategy, hard work, learning and accomplishment. It will more likely be through an honest self-assessment of my limits. (I was never as strong, smart, omni-competent, successful or bullet-proof as I thought). A greater openness to and reliance on God's power (My self-reliance fails before Shwachman-Diamond Syndrome, but God has access to resource I do not). And mystically through your prayers. God's Power, Elijah & Brandi Lovejoy
A few days after returning home from the hospital, we received the results of a fecal test that confirmed "severe exocrine pancreatic insufficiency." In short, Valor's pancreas is not absorbing fat, protein, and essential vitamins as it should, explaining his slow growth. Poor pancreas function along with bone marrow failure are two key symptoms of Shwachman-Diamond Syndrome (SDS), the genetic condition doctors suspect Valor has. While genetic tests, which take weeks to return, will confirm or deny SDS, the results of the fecal test stirred up mixed feelings for me.
Knowing Valor has pancreatic insufficiency explains his slow weight gain and why my aggressive efforts to increase my milk supply and supplement with formula did not result in proper growth. His pancreas diagnosis also removes some of the guilt I felt fearing I wasn't able to provide all Valor needs. And, most importantly, his pancreas issues can be treated with daily medicine and vitamins he will take for life. Valor is now growing at the rate doctors want to see. We are relieved to see signs of health in Valor and to have found a piece of the puzzle.
However, while we desperately want answers, receiving a diagnosis involving words like "incurable genetic disease" is heartbreaking. I don't want Valor to have Shwachman-Diamond Syndrome for many reasons. 1.) Receiving a diagnosis feels so final, like a judge's sentence or pounding gavel. We may be able to file an extension for our taxes, sweet talk the police officer about our speeding ticket or motivate our screaming children with bribes. But somehow a doctors words feel more weighty, more written in stone. Our doctor has looked inside us or our child and found things we didn't know existed. 2.) The hope that Valor's hospitalizations have been blips on our screen and life will soon return to normal fade as his diagnosis becomes more clear. 3.) I am sad that something in me, Elijah or both has been passed on to Valor and is causing his illness. What does that means for our other kids and future grandchildren? We won't know the answers to these questions until we meet with Duke genetics doctors in May.
As my mind wrestles with these difficult thoughts, God pulls me back to our spiritual condition and his solution. We all have a "genetic disorder." It's called sin. Since Adam and Eve, parents have been passing on their sin nature to child after child. King David, said he was "fearfully and wonderfully made" in Psalm 139. But he also said, "Surely I was sinful at birth, sinful from the time my mother conceived me," in Psalm 51 after committing adultery with Bathsheba and murdering her husband, Uriah. What if we mourned the sin we passed on to our children with the same devastation we grieve an inherited genetic disorder?
But God also has a final word of his own. "There is therefore now no condemnation for those who are in Christ Jesus...It is God who justifies. Who is it that condemns? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?" (Romans 8:1,33-35)
In Paul's day (and in some places today), famine and sword felt very "final," just as today our diagnosis often feels final. Yet, God has spoken a more final word than our diagnosis. He has spoken a word of life, of justification, of reconciliation that will overrule all dreaded words or conditions. How can God speak a more final word than our diagnosis?
The International Christian ministry called Alpha tells the story of a man named Patrick, who had double kidney failure and was on dialysis for 25 years. Patrick was a Christian, but God did not heal him through prayer or through a kidney transplant that failed. Instead God gave Patrick the gift of healing and used him to pray for and heal many sick people. As Patrick reflected, God already gave him the best gift of eternal life and a future resurrected body at Jesus' return. To have his body healed before the resurrection would just be icing on the cake.
In the same way Jesus was sentenced to death and executed, but God spoke a more final word of resurrection for Jesus, and all who seek Jesus' life, truth and ways as their highest good. Whatever your diagnosis, in Jesus, God has spoken a more final word. God's Final Word, Brandi & Elijah Lovejoy
Below are 7 Bible passages that have taken on new meaning and new encouragement for us in light of Valor's illness. We hope they will bring you encouragement in your own illness or suffering. This chapter of the Valor Chronicles is abbreviated from a sermon preached at Resurrection Church on March 31, 2019.
1. "I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well" (Psalm 139:14).
When we first got to Duke our tears were primarily tears of sadness. "What's this going to mean for our family? How long will Valor live?" But gradually our tears turned into tears of beauty...
I've heard it said that having a child exposes your selfishness. Consider how much selfishness is exposed when you have five children. Some of my daily battles include: "I need some down time. I'll let the kids watch videos for a couple of hours, so I can sleep, eat without interruption, or watch a show I want;" "The kids are finally asleep. Now I can relax, eat a yummy late night snack, and do what I want;" "Why are the kids not listening? It's easiest to yell, so I'll give into my anger and scream at them;" "Caring for a newborn is exhausting. I need to sleep in. The dishes can wait. I'd rather drink my coffee and relax than enforce discipline, routine, and structure in my family"...
"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...
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...
Most cultures of the ancient world contain a catastrophic flood story of some kind. The stories often involve a boat, a lone person or family who was saved and a stated reason for judgment by God or the gods. (Visit this website for examples: http://www.talkorigins.org/faqs/flood-myths.html )
As Valor's emerging diagnosis and the seriousness of his condition has sunk in, I've felt a growing sympathy with Noah and the Biblical flood story. Not only have my tears come rolling down like waves, but test results and ominous sounding medical words like "failure to thrive," "multiple blood lines down" and "possible leukemia" crashed into my ears with growing alarm. Like the panic of a drowning person, I gasped under an avalanche of dread as Valor gleefully smiled, bobbing around his waving hands and feet...
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.