We adopted a child with hydrocephalus and an unknown brain tumor. That can be such a puzzling thing for people to process. Why take on that kind of unknown, that kind of burden? Our flesh says to run away, but God tells us to move closer.
We received Kai's referral, knowing he had hydrocephalus, multiple surgeries and a possible brain lesion. We talked with specialists and doctors and felt comfortable with what we may be dealing with.
A few days before traveling to China, we had an unsettling conversation with one of Kai's doctors. She was very concerned about the vague description of the brain lesion. She prepared us for the worst case scenario. We left the conversation terrified about what we were walking into. Our emotions were raw and the unknown and gravity of what we were walking into was overwhelming.
When we met Kai, we were thrilled to see how healthy he was. We learned that he had spent 20 months in a foster apartment on campus at the orphanage. This was an incredible surprise because it meant that his health had been stable throughout this period.
When we arrived home, the doctor who we spoke with on the phone was pleasantly surprised to see how healthy and thriving Kai was. The little boy she imagined when she reviewed his records didn't match the vibrant little boy she met. We were so grateful! Kai underwent an MRI under anesthesia to check the status of his hydrocephalus and tumor.
We met with the chief of neurosurgery at our local hospital. He was wonderful and spent extra time explaining hydrocephalus and hydrocephalus treatment to us. He discussed the brain tumor, indicating that it isn't the typical type of tumor found in that area of the brain. He felt we would only learn more as we watched it over time.
We followed up with neurosurgery at Children's Hospital in Philadelphia to get a second opinion regarding the tumor. The surgeon was pleased with how healthy Kai looked, but he was puzzled about the tumor. The CT Scan showed that his hydrocephalus is under control and the shunt is a commonly used programmable shunt. The surgeon had not seen this type of brain tumor and wanted Kai to be seen by neuro oncology. No one seemed to be confident about the type of tumor or how it was related to his hydrocephalus.
It's obvious why our flesh says to run away from hurt and unknown. We crave comfort. We want simple. We desire health. We hope for life to be beautiful. We want to feel in control. We run away from what scares us. We try to avoid financial hardship. We dread any health diagnosis that could mean long term suffering or death. Our flesh longs for the unbroken journey.
Why does God call us to move closer to brokenness? Because when we realize just how desperately we are broken and helpless, we realize what we really need. Jesus. In broken and hard and unknown places, we get the most comforting, consistent and life giving thing. God's presence.
I have walked through hard seasons in my life. My weary soul at times has cried out for God to just change my circumstances. I have not always wanted more of God's presence. To be honest, there are still days when my heart craves the simple, comfortable, controlled circumstances much more than I want God's presence. In His kindness, he continues to draw me to himself. I used to be convinced that God was allowing more suffering or difficulty in my life because I didn't suffer well enough the last time around. My understanding of who God was pushed me further away from him. I tried to be better, hurt less, believe more. I just couldn't muster enough faith or trust to please God. A friend gently reminded me, that's not what God wants of me. God wants me. God wants me to have more of Him. How drastically this changes my approach to pain and brokenness. I see the God who calls us blessed when we suffer, mourn, grieve and are persecuted. Why? Because He always gives us more of Himself.
Last Monday, Kai and I met with the neuro oncologist. The doctor began to explain Kai's tumor. Things began to make sense. Kai's brain tumor is made up of the same cells that line the ventricles of the brain. These cells produce cerebrospinal fluid. The tumor itself is producing additional fluid. The tumor is located within a ventricle in his brain. The location of the tumor blocks the fluid from draining. These two factors caused Kai's hydrocephalus.
The doctor was so gracious to listen to all of my questions. Kai will need an MRI under sedation at CHOP in Center City Philadelphia every 3 months for 1-2 years to closely monitor any growth or change. This will eventually happen every 6 months and then annually thereafter. We should be able to have the MRI and see oncology later in the same day. This type of tumor will not become malignant. This type of tumor will remain benign and due to the location of the tumor, it will never grow and impact other parts of his brain. If it grows, it will cause more fluid and block more fluid from draining, so we will again only be dealing with symptoms of hydrocephalus. The tumor is vascularized and would require surgery by a specialized pediatric neurosurgeon if it ever needs to be removed or biopsied. This tumor is not genetic. Kai's children will not have any increased risk of this tumor occurring.
As I sat there holding Kai, hearing this wonderful news, I started to cry. I was struck by how faithful God is to us. Not only because of the type of tumor Kai has-- though we are so thankful for this-- but because of His incredible nearness. I thought of Kai's birth parents. If only they knew things weren't that bad. They wouldn't miss out on a lifetime with this incredibly precious little boy. I thought of how God created Kai. He knit Kai together in his mother's womb with these extra cells that would completely alter his life. These extra cells caused his parents to abandon him. These extra cells caused him to be on the waiting children list for many months with families passing over his file. These extra cells gave us one of the greatest blessings we could ever imagine. Because of this tumor we were able to become Kai's family. This process of becoming Kai's family and walking through all of these unknowns has given us so much more of God's presence.
We praise God for this incredible news about this little boy's health and future. We praise God for the courage and faith He has grown in us. We praise God for His incredible nearness in the good appointments, scary conversations, unknown and ups and downs. Wherever Kai's journey leads, however the story of our family unfolds, we pray that we would always long for more of His presence than anything else we could have. Our greatest blessing is not Kai's diagnosis. Our greatest blessing is truly God's nearness.
I could have spent a lifetime trying to avoid all that's hard. In reality, I can do very little to avoid hardship. If I avoided all that's hard, I would have missed out on so much of who God is. In hardship, God calls us near. In brokenness, God comforts us. In persecution and trial, He calls us blessed. Say yes to broken. Say yes to difficult. Say yes to unknown. Say yes to more of Jesus.
Blessed are those who are spiritually needy. The kingdom of heaven belongs to them.