A September to Remember
Brain surgery and a stay in a children’s hospital changed a family’s outlook
By: Ryan French
I was staggered when I learned our son, Jackson, had to have brain surgery, but at the same time I feel fortunate he was able to have it. But this story isn’t just about Jackson; it’s also about a little girl in the ICU room next to him and the effect she has had on our lives. Allow me to explain.
September is Chiari Malformation Awareness Month, which is the condition Jackson has. Every condition has a month and a color (Chiari’s is purple); September is the month we always remember. I do a lot of reflection as we wear shirts and hats with the Chiari logo.
Jackson vomited almost every day after he was born. That went on for nearly two years, until the day of his surgery. Chiari is a condition in which part of the brain slips down the hole in the skull. The skull then puts pressure on that part of the brain, resulting in various symptoms; for Jack, it was vomiting. And he became an expert at it. I was always amazed at the velocity and volume. It was alarming.
On June 11, 2017, Jack underwent surgery at Advocate Children’s Hospital in Oak Lawn, Ill. John Ruge performed the 10-hour surgery. The waiting room at the hospital was long and narrow. My wife, Stephanie, and I paced it at least 1,000 times that day. We looked at every magazine and played games on our phones, but exchanged little conversation. To the side were private rooms that reminded us of what we were facing. Those rooms were reserved for doctors often telling family members bad news. If you were ushered into one of the rooms, you knew things had gone sideways.
A big-screen TV updated you on the status of your loved one: pre-op, surgery or post-op. Each patient was given a numeric code, only shared with the family. When we saw Jack was in post-op, we sat and stared at the door to the room, waiting for Dr. Ruge to appear.
I’ll never forget the 30 seconds it took Dr. Ruge to reach us. Never. A million thoughts raced through my mind, almost none of them good. Steph and I aren’t religious, but I did some praying to any god who was listening. Please don’t direct us into one of those private rooms. When Dr. Ruge sat beside us, Steph started bawling with relief; I held her hand as she shook. Jack had come through surgery and was in recovery.
Jack was transferred to the pediatric ICU to recover, and we headed there. I remember that walk too; Steph and I felt sorry for ourselves. Until we saw Dr. Ruge, we had seen multiple doctors over the course of two years without getting any answers. The debt from medical bills was piling up and was about to get drastically worse. Then we walked into the ICU unit at Children’s Hospital and quickly learned how lucky we were.
The little girl had been there for months. She was never going to leave. The first time I noticed her, a nurse was sitting at her bedside. No family members were around. We learned she had been in and out of the hospital most of her life, and her parents were drowning in medical debt. They had another child, so one parent would stay with the young girl, and the other would be at home. They would leave for work in the morning, and an attendant would stay with the girl. After work, one parent would come directly to the hospital. This was their routine for months.
Imagine leaving your dying child at a hospital, knowing that saying goodbye might be the last one.
The hallways were full of stories just like that. As Jack improved, we wandered the halls and played in the recreation room. We met kids and their families. At times we almost felt guilty that Jack was going home with us. We cried more tears for other kids during that time than we did for Jack. If you want some perspective on life, visit a pediatric ICU unit.
Jack remarkably left the hospital after 10 days, and while he was home recovering, I started my Twitter account, looking for something to keep me occupied. Five years later, I am making a living from it. But my family’s ordeal taught me something much more important.
Before Jack’s surgery, I never really missed my two children when we were apart. I was running a group of restaurants, and that required long hours. I would often leave before they were awake and return home after they were in bed. I accepted that this was my chosen profession, and missing days with them was part of the routine. I didn’t know what I was missing.
For the next three years, I stayed home with my kids and tried to figure out how to make following golf a living. Steph worked as a nurse to help make ends meet. Although we were basically broke, it was our happiest time ever. Of course, there were times the kids and the dogs drove me nuts (any parent can relate), but not many families spend each night as we did. We had so many pillow fights that feathers often littered our tiny home. None of that would have happened if it wasn’t for Jack’s surgery and spending time in that hospital.
Jack is doing great. He has a big scar on the back of his head and deals with some minimal issues. (He struggles to reach across his body, so when he writes, he switches from hand to hand, which freaked out his new teacher.) He may have to have surgery again as he reaches puberty, but we try to think in the present.
September is Chiari Awareness month, but it is not a month we think about the hard times we endured. It is a month to reflect on how lucky we are.