Olivia Grace Chapman was born on March 8, 2012. Robert and I were both overjoyed and terrified to welcome her into the world–grateful for God’s gift in her and afraid that we would not measure up to the task of guiding her through the ups and downs of life.
Olivia was God’s humorous reply to my feeble attempt to orchestrate my own life through the use of birth control and a five-year plan. She arrived seven days before our fourth anniversary. As usual, God was right and I was wrong. He had so much blessing, wonder and joy in store for us through this tiny, 5 pound bundle. We knew it on that day–before in fact, but that’s a story for another time.
A failed newborn hearing test and some alarming comments from a well-meaning nurse rocked our new-parent world, but when Olivia went home from the hospital two days later, she had passed a second hearing test and had a clean bill of health. Robert and I didn’t know it yet, but these medical “scares” were minor compared to what we would face.
For a year Olivia filled our house with laughter, and she still does. Some of my favorite memories of her first year are of her laughing hysterically almost to the point of delirium. She is a night owl and would laugh for as long as someone was willing to play her favorite games. Gammy (my mom and the person who begged, cajoled and prayed Olivia into this world, despite my 5-year plan) was always willing to indulge.
Peroxisomal Biogenesis Disorder: A Rare Genetic Disease
After Olivia’s first birthday, we began to see symptoms pointing to something no one could identify. Her eyes would shake and developmental milestones seemed elusive. Olivia had always been tiny, but what was once attributed to my small size was now a cause for concern. Still, nothing added up, so our family doctor–the man who had delivered Olivia and close friend of ours–continued to order tests.
At this time, Robert and I were working as youth pastors, and Robert was slated to help lead two missions trips that would take him to Europe and Africa for almost a month. A week before the team’s departure date, Olivia became sick and was transferred to Cook’s Children’s Hospital by ambulance. We stayed there for almost a week, with a constant stream of specialists flowing in and out of Olivia’s room. Her liver was biopsied because of high liver enzymes, but we left the hospital without answers.
I encouraged Robert to go to Africa and settled in to wait for the results from the battery of tests that Olivia had endured while in the hospital. I was alone when I received the phone call.
Olivia’s geneticist called to diagnose her with a peroxisomal biogenesis disorder/zellweger spectrum. She attributed Olivia’s vision and hearing problems to the disease, along with developmental delay and the scarring on her liver.
Days later, with Robert still halfway across the world, I sat in the doctor’s office as she explained her prognosis–that Olivia would likely not live to be an adult and would be lucky to survive past early childhood.
Surrender, Freedom and Faith
The nine paragraphs above contain Olivia’s medical story. They reveal the facts–her patient history and the events as they occurred. But as my husband is fond of saying, “Facts can change but the Truth never will.” The intention of this blog is to look beyond the facts of life, not dismissing them, but realizing that JESUS–the Way, the Truth, and the Life–is greater. Surrendering is trusting Jesus, and that is the key to everything.
So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.–2 Corinthians 4:18
The truth is that God has used my precious daughter to center my heart and fix my eyes on the only story that ever mattered or ever will–the story of His son Jesus. His is a story of grace, of redemption, of healing, and of freedom. God is the author of good and not of evil; Olivia’s genetic disorder did not originate with Him. That was the work of His adversary. God has, however, used difficult circumstances to ground our lives in His grace.
I’ve found that true freedom comes only through surrender. It is Jesus who frees us from ourselves, and without His help, we cannot let go and be liberated. In learning to look up, I have also learned to let go. I am free to watch as Jesus weaves His healing story through our lives…
Our own little laughing baby :-D