"Wait, what?! I've never heard that could happen!" Those were Brandi's thoughts on Monday after hearing, "Sometimes they grow out of it," from Valor's Duke Pediatric Hematologist (blood doctor). The doctor was struggling to explain Valor's 4500 neutrophil count test results. In context 4500 is nearly three times his prior high of 1600 and well above his standard hospitalization level of zero neutrophils. 1500 is considered normal. His white blood cell count of 12.5 was also far healthier than all previous results.
Last year at Valor's diagnosis we had quizzed this same Pediatric Hematologist, "Do Shwachman Diamond conditions stay the same, deteriorate or can they improve?" Her response, "They tend to decline over time. We just won't know how fast until we track Valor's trajectory."
What makes the past couple weeks even more confusing is that Valor has been quite sick. He's stopped eating and drinking for long periods of time. He's lost a pound off his already slender weight. He's had a red rash all over his body similar to Fifth Disease. He has rarely slept through the night. His throat glands look like ping pong balls. And he's generally whimpered, screamed and just wanted to be held.
Brandi and I fully expected Valor's two routine doctor visits this week in Hope Mills and Duke to turn into automatic hospital stays. But they didn't. His numbers were astonishingly good. He had no temperature. The fundamentals were strong. Doctors suspected he was just fighting back to back viruses.
This raises a mysterious question. Can God partially heal you? We took Valor to a healing service one month ago on December 15 at Resurrection Church and asked God to heal him. Could God be doing that very thing, at least partly? We've taken a cautious "time will tell" approach and that continues. After all we've had hope before and been wrong. But the past month, we've had resignation and been wrong--4500 neutrophils wrong.
Richard Hays in his 1996 book, The Moral Vision of the New Testament, observes Jesus' ministry contains one partial healing. In Mark 8:22-26 Jesus spits on a blind man's eyes, lays hands on him and asks, "Do you see anything?" The man responds, "I see people, but they look like trees walking." Jesus lays hands on the man's eyes again. Then "his sight was restored, and he saw everything clearly." It was a partial healing, followed by a complete healing.
Coming immediately before Peter's confession of Jesus as "the Christ" in Mark 8:27-30, Hays suggests the story of partial healing is a spiritual picture of Peter. Peter confessed Jesus as the Christ. But Peter didn't yet "see" Jesus would go to the cross, die and rise again. The complete healing of Peter's spiritual eyes awaited Jesus' resurrection and the outpouring of the Holy Spirit at Pentecost.
Maybe Valor has been partially healed by Jesus in his bone marrow, but not yet in his pancreas. Maybe Jesus will touch the rest of his body for complete healing. Or maybe he will have a relapse again soon and go back to square one. Time will tell.
But the Apostle Paul is clear on one thing. All people who have come to Jesus, releasing their selfish independence to participate in his death and resurrection have experienced a partial healing from spiritual blindness. Paul says, "Now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known" (1 Corinthians 13:12).
In God's wisdom, he sees fit to heal our spiritual eyes partially now. Then completely at the return of Christ. Sometimes he does the same with our bodies.
We were hoping this wouldn't happen. Our family Christmas vacation was planned. The host home location, arrival time, meal plans and gift exchange protocol were set. All that remained was celebrating Christmas Eve and Day with Resurrection Church where I pastor. After that, off to the races for our annual family Christmas celebration.
And then it happened. Valor got fussy. He started getting hot, losing his appetite and not wanting to play. It was December 23, so we waited most the day hoping his fever would pass and we could still celebrate with family. By 9 p.m., he was getting worse not better. We took his temperature--101 degrees--enough to trigger an immediate trip to the ER. Brandi grabbed Valor's pre-packed hospital bag, called Duke Hospital and got the all-clear to check straight in to a local pediatric emergency room.
In the car, we comforted ourselves with the thought of Mary and Joseph making a similar emergency trip to Bethlehem for the census while Mary was pregnant. We made contingency plans for missing Christmas or arriving late depending on the length of Valor's stay. At 10:30 p.m. I dropped Brandi and Valor off, thankful my sister could be home with the older four sleeping kids. It would be a different Christmas without Brandi and Valor. But we were used to different by now.
At 1:06 a.m. I received an unusual phone call. Actually 2 phone calls--the first didn't wake me. The local hospital ran tests on Valor. His neutrophils were at 1600. 1500 is normal, but his are usually around zero when he checks in to the ER. His temperature had reduced to 99 degrees and his white blood count was normal. After a precautionary injection of IV antibiotics, he would be ready to go home.
Returning home from the hospital at 3 a.m. Christmas Eve morning, Brandi and I were tired and shocked. In his seven prior extended trips to the hospital, Valor had never been sent home early with good news, much less ABOVE AVERAGE neutrophils of 1600. Christmas was back on!
A couple days after the whirlwind of interstate travel, greeting family and exchanging gifts, Brandi and I snuck away to process our emotions about this strange new turn. We agreed Valor's unexpected homecoming felt like "a Christmas gift" and as if "brokenness was broken." The normal tired routine of sickness, hospital stays, needle pokes, and keeping an eye on 4 healthy kids while working full time was no longer normal. The brokenness of Valor's body had unexpectedly (if temporarily) been broken, and early Christmas Eve morning at that.
Can you relate to the tired routine of brokenness? Another family fight? Another toxic work environment? Another addiction relapse? Another bout of anxiety, depression or both?
Israel at the time of Jesus' birth could certainly relate to the tired routine of brokenness. Their king, Herod the Great, married and divorced ten wives, murdering at least one along with three sons, whom he suspected of conspiracy to overthrow him. Near the time of Jesus' birth, the Roman army crucified 2000 Jews along the streets of Israel as punishment for Judas the Galilean's revolt against Rome. Another day, another divorce, another family member murdered, another Roman crucifixion.
But somehow Jesus was different. Somehow Jesus broke brokenness. He slipped through Herod's murderous fingers. He bucked the downward whirlpool of inward rebellion, guilt and shame. He made family out of people who weren't his family. He even ran the gauntlet of a Roman crucifixion, including death, and rose from the dead three days later. Jesus broke brokenness.
Valor's unexpected recovery and surprise Christmas Eve homecoming remind us life isn't all about brokenness. Sometimes brokenness is broken. Sometimes you get discharged from the hospital unexpectedly. Sometimes, marital problems don't lead to another divorce. Sometimes, our favorite addiction doesn't enslave us again. And with Jesus, that "sometimes" has become a permanent "all the time." This Christmas we are thankful for Valor's small foretaste of what is becoming permanent.
Our marriage counselor once said, "Emotions are leading indicators of what is happening at a deeper level in your life and relationships." During the first week of Advent each year my emotions feel like they get hit by a bus. Advent means "coming" and begins the Christian calendar with a focus on Jesus' first and second coming at Christmas and Final Judgment, respectively.
The gospel reading for the first Sunday of Advent declares, "The sun will be darkened, and the moon will not give its light, and the stars will fall from heaven and the powers of the heavens will be shaken. Then will appear in heaven the sign of the Son of Man, and then all the tribes of the earth will mourn, and they will see the Son of Man coming on the clouds of heaven with power and great glory" (Matthew 24:29-30). In the broader context, Jesus is predicting both the destruction of the temple within a generation and the end of the world at an unknown future time of God's choosing. During this last week of Jesus' life, he is effectively proclaiming, "Your world is going to end. Here's how to prepare." Nothing like the destruction of the world to get you in the mood for a little Christmas shopping.
Reflecting on the last 8 months since Valor's Shwachman-Diamond Syndrome (SDS) diagnosis, I have felt similar emotions to Jesus' disciples hearing his words. Most people get their terminal diagnosis and likely cause of death after a relatively full life. Valor received his likely terminal diagnosis at 6 months of age, not at 70 or 80. And yet he's still alive and growing. "Your world is going to end. Here's how to prepare."
Just as Jesus' disciples sat with his message of destruction and new birth 40 years (in the case of the temple: destroyed in 70 A.D.) and 1990 years and counting (in the case of the end of this world), we also have sat with Valor's diagnosis and new way of life for 8 months now. What could Jesus possibly intend in this delayed destruction and renewal of creation? Perhaps Valor's diagnosis can help us better understand Advent and vice versa. Here's 7 things I've learned after reflecting on the emotional bus of Advent and Valor's diagnosis:
1. Be prepared: We prepare for fires, tornadoes and flooding. We should also prepare for death and final judgment. Pretending death won't happen isn't loving. It's cruel denial. Medical and spiritual preparation has been one of the blessings of Valor's early diagnosis. Thankfully Jesus is the architect of a new ark, forged by his own death and resurrection, that can endure the flood waters of death for all who repent and trust him.
2. We live in God's world. He doesn't live in ours: Before Valor was diagnosed, we tried numerous techniques to help him live in our world--feeding techniques, medicine techniques, sleeping techniques. After Valor was diagnosed, we realized none of our techniques could overcome Valor's malformed genetic structure. He needed his own dietary regimen, hospital regimen and medicinal regimen. Or he will die. Similarly we must adjust to God's world. Or we will die.
3. Time sifts priorities and values: When we got home from the hospital 8 months ago, we planned to keep Valor in a sanitary play pen away from people as much as possible, especially if they were sick. In the 8 months since, nothing cheers Valor up like getting to play with and be hugged by his 4 brothers and sisters, whether in the play pen or on Facetime from his hospital room. Love and affection have proven more valuable than strict sanitation.
4. Life will always be partial and fragile now, but full and indestructible at Jesus' return: It's easy to become resentful or confused why Jesus allows suffering, evil and sin to continue, including Valor's suffering. But this is to be ungrateful for what Jesus has already accomplished and impatient with what he has not yet accomplished. Jesus is still painting. Don't rush the masterpiece.
5. God is growing something: Have you ever eaten fruit before it was ripe? It tastes awful. In a similar way with Valor and the end of the world, Jesus uses the seasonal growing of figs to explain his delay (Matthew 24:32-33). The harvest will come. But first the fruit God desires must grow and ripen.
6. We have a treasure to guard: Jesus describes his return and the completion of his work as "coming like a thief in the night." The presence of a thief presumes we have a treasure to guard from theft or loss. The treasure is variously described in Matthew 25 as a divine marriage feast, eternal heavenly joy and an immortal inheritance. We wouldn't miss sitting down with Valor and Jesus for the heavenly wedding feast. I hope you won't miss either.
7. It is possible to die and grow at the same time. St. Paul did it regularly: When people ask how Valor is doing, I sometimes respond, "Dying and growing. Dying and growing." He's been to the hospital for extended stays 7 times in 14 months. Without modern medicine, he would be dead. And yet he's growing, smiling and laughing.
Yesterday Valor made his 5th trip in seven months to the local pediatric emergency room. He will turn one in nine days on September 26. The visits are becoming more routine, like taking a family member who works out of town to the local airport.
We have our familiar drop off spot in front of the hospital. Familiar prayers we say in the car. Familiar goodbyes to Valor and Brandi as they walk through the emergency room doors for the next 3-5 days. And the familiar ambulance ride Brandi and Valor take to Duke Children's Hospital 1.5 hours away.
To Valor's chagrin needles have also become familiar. He shakes his head violently and screams anytime needles approach now. Between blood draws, IV's for antibiotics and blood transfusions, Valor has been stuck with more needles before age one than the combined 24 years of his older four siblings.
Watching Valor's violent reaction to needles, we wonder about the long term effects of trauma. Psychotherapist Edward Tick, who has counseled Vietnam veterans through PTSD for over 40 years, calls trauma a "soul wound." Christian inner healing minister Francis McNutt speaks similarly about trauma as a potentially unrecognized spiritual transition point in a person's life.
"Suffering can make you bitter or better" is trite. But the axiom also hints at the spiritual battle and life-shaping stakes Tick and McNutt describe more eloquently.
As a Christian, I learned to receive unexpected suffering as a painful but also purposeful and divine gateway to resurrection. 2 Corinthians 4:10 is a classic summary, "We always carry in our bodies the dying of Jesus, so that the life of Jesus may also be manifested in our body."
After trying many unfruitful approaches to suffering--denial, self-pity, anger, escape, workaholism--suffering with Jesus, so I could rise with Jesus was a welcome and life-giving alternative. It also had the benefit of being divinely and historically true. My suffering had dignity. It had purpose and fellowship. I was being gathered up into Jesus' suffering, so I could also be gathered up into Jesus' resurrection.
What about young children? Can they have fellowship with Jesus without reading, speaking or apparent understanding? John the Baptist lept for joy while still in his mother Elizabeth's womb at hearing the voice of Jesus' mother Mary (Luke 1:41). Abraham's child Isaac had fellowship with Jesus across the millennia when Abraham "received Isaac back from death" (Hebrews 11:19) following God's test-commandment for Abraham to sacrifice his son on Mt. Moriah.
Which brings me to my pressing question. "Can babies suffer with Jesus?" Can Valor suffer with Jesus? Can his soul find fellowship, comfort and even resurrection with Jesus, rather than trauma-induced anger, confusion, bitterness and despair. I hope so.
God's Hope & Love, Elijah & Brandi Lovejoy
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...
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.