A few weeks ago our fourth child, Jack Judah, was born! Within 24 hours of being born he was life-flighted to Seattle Children’s Hospital, and we’ve been in the Neonatal Intensive Care Unit since then. During our time here he’s been diagnosed with bilateral perisylvian polymicrogyria, (BPP for short), epilepsy, petechiae, hip dyspepsia, and laryngomalacia. Needless to say it’s been a whirlwind of a few weeks juggling a newborn, a wife recovering from giving birth, and making sure our two other boys are taken care of. It’s been emotionally taxing, physically draining, and spiritually challenging.
BPP is a rare neurological disease that affects the outer surface of the brain. Everyone is born with folds on the surface of their brain, but in BPP those folds are more plentiful and smaller (polymicrogyria literally means: many small folds). With BPP there is so much that is unknown; Jack could have severe delayed development as well as lifelong seizure attacks and a slew of other difficulties or he could have a relatively normal life and just deal with minor speech impediments. So much is up in the air and it all depends on how well he does with lots and lots of therapy as he gets older.
In the last 72 hours he’s had three episodes where he has stopped breathing. Right now the medical team here has no idea what is causing these apneic episodes. More unknown. More questions.
I was driving to Walmart the other night (which in Seattle takes an hour round trip) when I started praying for Jack and everything that has been going on. As I began to pray I got a vision from God of Jack preaching in an auditorium to thousands of people and I felt God tell me that one day Jack will preach to thousands of people. I continued to pray more fervently, thanking God for the hundreds of people that Jack will speak to when I felt God nudge me again and say “Thousands”.
The next day Chanel and I had a long conversation about what the future is going to look like. For now, there is a lot of unknown. There will be a lot of trailblazing into this new world of raising a special needs child. At the end of our conversation, which was basically just pumping each other up and quoting scripture, we decided a few things:
We’re not going to focus on the unknown of BPP, instead we’re going to focus on the unknown of God’s plan for Jack’s life.
We know God has a plan for Jack; a plan to prosper him and not harm him, (Jeremiah 29:11) a plan to be with him (Isaiah 43:2) and a plan to never leave him (Hebrews 13:5).
Instead of asking “How will BPP affect Jack?” we’re going to ask “How is God going to use Jack’s BPP to affect others?”
Jack’s life will be a living testimony to the faithfulness and graciousness of God. He is a fighter and his middle name means “God will be praised”. God will be praised despite BPP, or PMG, or whatever else is thrown at Jack. My hope is that one day Jack will come to know the truth that through his weakness, God’s strength is made perfect in him. (2 Corinthians 12:8).
We are not going to complain or whine.
God has blessed us with a beautiful baby boy whose illnesses pale in comparison to other children here at the hospital. It could’ve been so much worse. The PMG could have spread across his entire brain but it didn’t. He could have died from the apnea but he didn’t. We’re choosing to focus on the blessings and promises from God.
At the end of the day God’s ways are so much higher than our own.
My buddy Job said it best: “Surely I spoke about things I did not understand, things too wonderful for me to know…I had heard rumors about You but now my eyes have seen You.” (Job 42:3). We know God IS in control, not in a figurative or theological sense but actually in control. That’s enough for me.