Growing into Bravery After a Child's Life-Altering Medical Diagnosis
By Jodie Pine
God's Brave Women - Jodie's Story
I find myself living in the before and after within the framework of diagnosis.
But I've also pitched my tent in between: the what is and the what could be, the reality and the never will be, the unanswered question of What are you doing God? and the nowhere-else-to-go kneeling before Him in surrender.
There's the everyday kind of brave we grow into.
"There's the everyday kind of brave we grow into."
Before we received the news that our not-yet-adopted son Daniel had awoken from a 6-day coma, he lay mostly still, unresponsive in the hospital four bus stops away from where our family of five was living in China.
We had been rejoicing for all of two days because our 6 ½ year adoption wait had come to a celebratory end. We “battled” to be matched with the two boys we had been offered after we were told it would be impossible to adopt them together. When the mail carrier brought us the long-awaited-for documentation that we were officially matched with both of them, we praised God with friends and family around the world. Clearly, God had done the miraculous. But then He brought us to a very unexpected turn in the path with news of Daniel's severe brain infection.
We didn't know if he would ever be able to walk, talk, or smile again.
Could we still praise God within these non-praise worthy conditions?
At that point I didn't know.
"Could we still praise God within these non-praise worthy conditions? At that point I didn't know."
The orphanage director arranged a van to drive us home with our boys' few belongings. David, full of 8-year-old bravery, took the steps by himself and we carried Daniel up our apartment building's 9 flights of stairs. The song that our oldest son had shared with us before he'd flown to the US that summer to start college, “Your Love Never Fails,” stayed on repeat.
Your love never fails.
It never gives up.
It never runs out on me.
Over the next few months, we witnessed God's never-failing love bringing Daniel back to life as he learned to feed himself, walk, talk, and toilet train. Amazingly, the movement disorder he had developed, and medically speaking should have kept for the rest of his life, gradually disappeared.
In the in between, we named our gratitude as well as the questions we still held. What were the long-term implications of Daniel's brain damage on his ability to learn and remember? Would he ever be able to live independently?
We moved back to the US a year and a half after their adoptions in order to access more extensive educational and medical resources. David and Daniel progressed in English, made friends, and had corrective surgeries on their legs and feet. As we launched our second and then third into college, we experienced the rich blessing of living near our families.
But then God led us down another unexpected turn in the path after we moved from CO to IN two summers ago. I knew David would do fine, but I worried as I watched the school bus door close behind Daniel on his first day of middle school. Changing classes in an unfamiliar building meant he was certain to get lost. Would the school be attentive to his needs and able to adapt the 6th grade curriculum to his 2nd grade learning level?
At his first IEP meeting that fall his special ed teacher informed us that because they weren't sure whether Daniel was retaining anything, they didn't know if he could stay. It might be better for him to stop academic learning and enroll in a Life Skills class at another school.
This unexpected assessment knocked me down and I wrestled with God at a soul care retreat over what felt like defeat for Daniel. I was not at all ready for him to give up on learning alongside typically abled peers. I hated that his life was becoming more and more limited. How could he experience “life to the full” that Jesus promised with all that God had taken away from him?
Beside the crashing waves of Lake Michigan, I lamented that this is not the way I would have written Daniel's story. But God had not given me that choice. I didn't know how His plans for Daniel could be good, but I wanted to trust that He knew what He was doing.
How could he experience “life to the full” that Jesus promised with all that God had taken away from him?... I lamented that this is not the way I would have written Daniel's story. But God had not given me that choice. I didn't know how His plans for Daniel could be good, but I wanted to trust that He knew what He was doing."
As his mom I had committed myself from the beginning to provide all the resources I could for Daniel to be able to reach his full potential. The reality that he was regressing instead of progressing made me feel like I had failed him.
Maybe, God proposed, I could switch places with Daniel and let him be my teacher.
"Maybe, God proposed, I could switch places with Daniel and let him be my teacher."
Following that retreat, we saw Daniel's physical symptoms worsen, in addition to his cognitive decline. He had trouble staying awake during the day, difficulty standing and walking, and toileting accidents had become the norm.
The infamous year of 2020 began for us with a trip to the emergency room, which turned into a week's hospital stay including 3 brain surgeries, and an eventual diagnosis of brain cancer. With Daniel as my teacher, I learned what bravery in the face of adversity really looks like.
"With Daniel as my teacher, I learned what bravery in the face of adversity really looks like."
Throughout 4 rounds of chemo and 4 weeks of radiation, his number one request was for me to read to him from the Jesus Storybook Bible. “God's never stopping, never giving up, unbreaking, always and forever love” became our mantra.
As I saw Daniel live out his faith, without question he experienced life to the full on his cancer journey. When I doubted whether God's purposes for him were good, I found my praise for God becoming less restricted by my own conditions on what could be deemed praise-worthy.
"When I doubted whether God's purposes for him were good, I found my praise for God becoming less restricted by my own conditions on what could be deemed praise-worthy."
Today one of my very favorite things is hearing Daniel sing “You Make Me Brave” by Bethel Music. With his hands stretched to the heavens he pours out his heart:
You make me brave.
You call me out beyond the shore into the waves.
You make me brave.
You make me brave.
No fear can hinder now the love that made a way.
And I’ve realized that through Daniel, the truth in those lyrics have been become embedded in my own heart as well.
I have been growing into an everyday kind of brave as I follow the footsteps of my son.
"I have been growing into an everyday kind of brave as I follow the footsteps of my son."
Brave Woman Manifesto
Make sure to check back next week as another courageous Sister shares her story!
And by the way...
You are Brave!
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About Jodie
Since her family returned to the US 6 years ago after 20 years of ministry in China, Jodie has transitioned to a member care role within her organization: shepherding global women as they re-enter their passport countries. She has also pursued writing, speaking, soul care, social justice, adoptive parenting, and interfaith connections.
One of her highlights from last year was becoming a Nai Nai (Chinese for grandma). She cherishes those times when her growing family can play ultimate frisbee at a park or pass around the chopsticks and enjoy her husband's homemade Chinese food.
You can find her on her blog jodiejournal.blogspot.com, as well as Facebook or Instagram.