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
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.