Hopes & Fears
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
3/27/2019 08:31:11 am
Praying for continued strength , Grace that only the Lord can provide for you all!! Much love !!
3/27/2019 09:20:13 am
Beautiful, real and encouraging to our walk with God. Praying with you all.
3/27/2019 10:53:04 am
We are standing steadfast for Valor and his complete healing and at the same time giving all our fears over to Jesus. We are privileged to be in this battle together, knowing the war is won. Your journey is teaching us.
3/27/2019 11:32:50 am
Tears as I read Hopes & Fears. I pray for divine healing for Valor and love, support, comfort and peace for both of you and your sweet children. We love you, Brandi and Elijah.
3/27/2019 11:36:47 am
Your faith is such a beautiful witness to me. Thank you so much for sharing your fears and the reminder of repentance. It is a privilege to stand in the gap for Valor. Praying for God's grace and mercy be poured out on all of you richly and generously.
3/27/2019 03:59:28 pm
Our prayers are with you!
3/27/2019 03:59:55 pm
You're in my prayers and on my heart throughout the day. God bless you and strengthen you and be your ever-present help.
3/27/2019 04:10:30 pm
Thank you, Elijah and Brandi, for your honesty and vulnerability. I too am encouraged by your faith. When you were in the University of Kentucky pediatric ICU in December of 1991, carolers came to sing in the unit. Mama and I were deeply moved and encouraged by the words of many carols. We always had seen you as a child who had been born to us, a son who had been given us. Then as now, we have always been so thankful for you. God spared your life for many reasons, I'm sure; e.g., He loves you. He has a plan for you, etc. But I also feel like your "awakening" was an act of mercy for us. My faith was not as strong as yours and I'm doubtful I could have borne such a loss. We love you and your family. With you both, we aspire to walk with God in such a way that we will "fear no evil."
3/29/2019 03:27:34 pm
I've though a lot about my time at the University of Kentucky Hospital with viral encephalitis as well, especially the other children on that same ward you asked me to pray for when I woke up from the comma and had complete amnesia the first night. It is so easy to get isolated in our own sickness, pain or just life and to forget the people right next to us who are also in need. Praying for the other children on our hall was a helpful discipline, then and now.
3/28/2019 12:50:40 pm
I'm thankful you guys decided to document and share your journey. It is such a blessing and encouragement to peek into your lives as you are honest and vulnerable with this difficult path God has put you on. We will be praying for you guys. Love, Rebecca and Andrew
3/29/2019 10:06:46 am
Hi, I am a part of Erin’s prayer circle and have been praying for Valor. She shared this blog with us today. Thank you for writing about your journey. I have two children, both of whom struggle with getting sick a lot and cannot do what most kids can do, and this entry helped me to realize my own silent fears that need to be confessed to Jesus. I’m glad Valor gets to be home with his family. We will continue to pray and contend for him, for complete healing and wholeness, for you and your wife and your beautiful family.
3/29/2019 03:23:07 pm
Thank you for praying Mijin. I'm glad this entry helped you identify silent fears. I hope you have a friend, spouse or pastor you can confess your fears to in the presence of God. It is powerful.
3/29/2019 10:12:44 am
Someone mentioned your “new normal.” To me, those two little words are so common. It is difficult for anyone to imagine what you all have and will face...even those of us having faced health battles because no two situations are alike. Whenever there are different people, different families, different coping mechanisms, and/or different circumstances, nothing compares. My doctor once told me the easiest way to explain my conditions (not unique to me but same principle as many others) is to first remind them we’re land creatures. Now, imagine being thrown in the ocean and living....the fears, comforts, pain, adaptations, always praying for help, survival, worrying about the dark, facing the next storm, trying to preserve our energy, trying to remain calm with all of the unknowns, not knowing if it’s best to be still or make a go for it, and not knowing how long you can swim. We can all be thrown in the same ocean, just a few feet apart, and experience the situation so differently. The only commonality is God, and when we’ve been placed in the ocean, we ALL have only One to rely on! He will not abandon us, and as you stated similarly....being in the middle of the ocean, your “new normal,” you will be closer to God than ever before. I pray for your continued peace, endurance, strength, and for Valor’s healing. I pray your strong faith and deepened relationship with God Almighty will continue to sustain you, your immediate family, and all of us walking alongside you through this new normal. As I typed this message, Valor’s song began to play on the radio....I raise a Hallelujah for Valor!
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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.