"We've just gotten him stable, but he still may die."
Those were the only words the Pediatric Intensive Care Unit head physician spoke to us before she turned around and left the room. She and several other cardiologists and residents had worked on our nine-week-old son, Trent all night long to save his life. Twenty-four hours before, we had been living a normal life. Suddenly our normal had turned into a nightmare.
In May of 2010, we welcomed a healthy, nine pound and 11 ounce Trent— the youngest of three boys— into our family. We took him home and we all began acclimating to life with a newborn. We were exhausted, but happy
But, suddenly and unexpectedly, on the night of August 4, 2010 our lives changed. Just before I put Trent to bed for the night, he began to show some unusual symptoms. I was concerned, but not alarmed. I put him to bed, but I kept checking on him. I finally got in touch with a physician friend who gave me the advice to take him to the ER using the logic of "better safe than sorry." I quickly scooped him up and took him to Children's Hospital ER. Within 45 minutes, Trent was on life support.
F. Scott Fitzgerald says that there is a "dark night of the soul." That first night of his hospitalization was that for my husband and me. The intensity of the darkness outside seemed magnified as we prayed and cried through the night for the life of our baby. The next day, Trent was transferred to the University of Alabama Medical Center's Cardiac Intensive Care Unit because he was too sick and unstable to stay at Children's. He needed to be near the ECMO machine— a machine that would pump his blood for him until he received the heart transplant that doctors had predicted he would most likely need.
Several days passed and amazingly, Trent became stable enough to wean from the ventilator! We were elated! We were able to hold him again, with tubes and cords from all over him. His heart function was no stronger than when he was admitted, but at this point he was supported by a vast array of medications that were helping each organ function more easily in order to decrease the stress on his fragile heart. As the days and weeks passed, his heart function did not improve and his lab numbers still showed that he was extremely medically fragile.
One particular day in UAB, I had a crisis of faith. I was completely exhausted, grieving and anxious. My mind was so darkened by those factors and my circumstances that I could not feel God's Presence. I went into the bathroom of Trent's room and cried out to the God whose existence I was doubting. The best way I can describe what happened inside me is an earthquake of my soul. I felt a chasm open inside of me the went to the deepest depths of me. At the foundation of this chasm was Jesus! Jesus! My Jesus! The One Who is called The Rock! He showed me in that moment that He is Who He says He is: The Immovable Rock, the Foundation of my Soul! When I was not faithful, He still was! And He held me, He supported me. And I knew He held my son.
So many moments of our journey required us to fix our focus on faith rather than facts. We continued to be told that Trent would almost certainly need a heart transplant. One particular morning was a turning point. Two options had been explained to us: Trent had to wean off a particular powerful IV heart med, or he would have to have a heart transplant. Two previous attempts to wean him had failed because he had crashed with each attempt.
We had been praying, but the intensity of our praying for God's miraculous intervention took on fresh energy as we neared the deadline for this crucial decision. Our family and friends understood. They prayed with fervent intensity.
Trent's primary cardiologist walked in and cheerfully announced that the third attempt to wean him from the powerful IV heart drug had been successful! Just like that, God had changed the course of our lives, once again.
After several weeks in UAB, Trent was discharged home to our care. His heart function had not changed, but he was medically stable on 11 powerful mediations. These meds were to be administered to this tiny sick baby with terrible reflux on a strict, regimented schedule. We were exhausted, completely stressed, our two other boys missed us and were needy. We were entering a new normal as a family. It was daunting. I was told that even a common cold would be "very bad" for him. He was essentially home-bound and much of the time, so was I.
Trent's sudden illness had become chronic. My husband and I learned to lean into God's Word like never before.
I had believed in Jesus as my Savior since I was a child but in this time, I came to believe and trust— in a fresh new way— in God's eternal plan. The scope and breadth of Trent's life stretched into eternity. I was assured through my relationship with God and through His Word, the Bible, that God loves him and that He loves me. I was assured that though I didn't understand all the the reasons this was happening, God was with us and was providing for us. God helped us learn so many personal lessons about His character and His now and forever love. God's Presence and empathy powerfully comforted and strengthened us.
I am no longer a fearful person. God has taught me that His unrelenting love and plan and His Word are far more powerful than any source of my fear. When I am tempted to fear, I know to take my fearful thoughts straight to Him. I never have to bear them alone. I was never meant to. The depth of God's love is seen most plainly and clearly through the pain His Son endured for us on the cross, so that ultimately, we don't have to fear even death.
I have other amazing news: Over the course of a year— slowly but surely— Trent grew stronger! One by one, he was weaned from each and every medication. The last of which was the most powerful. Drawers full of syringes, have now been replaced by kitchen utensils. A large basket of medications on my kitchen counter has been replaced by a bowl of fruit. And best of all, I have the great news that Trent is fully healed and his heart is strong! At his last cardiology appointment his cardiologist said, "his heart looks like nothing every happened!"
I rejoice in the Holy Presence of God and joy that defied my broken heart. I am filled with a concern and a compassion and empathy for the hurting. I am experiencing a freedom from pretense and fear and a passion to share the present and eternal hope found in Jesus Christ with others. And I have seen God's miraculous Power to heal on display! These are just some of the beautiful gifts to my broken heart that has been restored by God!
I know that suffering has a beautiful purpose in the lives of those who place their trust in God, because God redeems the suffering of his beloved, now and forever! He truly brings beauty from ashes and replaces our tears with rejoicing! God is weaving His love story through all the moments of our lives.
"I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live." Psalm 116: 1-2