Phoenix Children’s Hospital was a familiar place to us, with its brightly colored exterior, cheerfully decorated interior, and friendly staff. We made a 95-plus mile drive from our home in northern Arizona a couple times a month to visit the place. At the end of our visit, we’d usually get lunch or visit our favorite outlet mall. It became routine. Normal, even.
On this particular day, I was describing how pleased I was with our son’s progress to the doctor. His visible seizures were much fewer than in the recent past — there were even some days when we didn’t see any seizures. They were still there, sure, but his epilepsy was more manageable. It felt like things were starting to get under control.
“I know you’re pleased with your son’s progress, and I am too,” the doctor began. “Even so, his seizures are not even close to under control. We’re going to need to take a different approach. I think it’s time to consider epilepsy surgery to remove the section of his brain that’s producing the seizures,” he said.
I sat there silently for a minute, hugging my little boy a little tighter. “But things are so much better,” I said.
“You’re right,” he said. “They are better, but let’s talk about his life. Things other kids his age can do, like riding a bicycle, climbing playground equipment, or taking a bath, pose a serious risk for your son. And think about when he’s older. If we can’t get his seizures truly under control, he might never be able to drive a car. Plus, we need to consider how the medication is affecting his quality of life.”
He was right, of course. I usually didn’t think about these things, because it wasn’t productive. Instead, I focused on the positive, as I knew his care was being directed by a talented group of medical professionals. This helped me cope with what was clearly a challenging situation.
“Okay, let’s talk it through,” I said, after another moment of silence.
Embarking on the Journey
This particular journey started in earnest about five years prior to that appointment. As I was driving, I’d glance at the baby car mirror to check on him once in a while. Every now and again, I’d see a grimace on his face, his head cocked strangely to one side with a bent arm and tightly clenched fist.
These early incidents lasted mere seconds, but my mama intuition told me something wasn’t right. Thus the search began to figure out what was causing these strange “tics” or “twitches” (as I thought of them at the time). Over the course of the next five years, we spent countless hours visiting medical professionals to first get a diagnosis and then figure out how to get his epilepsy under control.
We tried medicine after medicine, but it wasn’t until we were assigned a new doctor who had been hired to start an epilepsy monitoring unit that we started to see real progress. This doctor was collaborative and open and willing to try new things. I felt like we were partners in my son’s treatment plan.
As I saw progress and came to understand the why behind what the doctor was recommending, I grew to trust him. I saw his faithfulness in making sure our son was given the best possible care. He was open to answering questions, showing us time and again how much he cared. This gave me hope.
It turned out our son had medically intractable epilepsy, which really just meant medication had failed to bring his seizures under control. Seizure medication hadn’t worked well for our son, but the doctor believed epilepsy surgery might be a good treatment option for him. I wanted nothing more than healing for our son.
Coming to Grips
At the time, I was heavily pregnant with our would-be middle child and just finishing up the last class for my MBA. Life was a little crazy, and the thought of adding epilepsy surgery to the mix felt overwhelming. Although I wanted to try whatever treatment plan was right for our son, I wasn’t sure how I could handle caring for an epilepsy surgery patient, tending for a newborn baby, and recovering from a c-section at the same time.
I shared my concerns with the physician, who comforted me by saying it wasn’t going to happen right away. There was a lot of additional testing and preparation needed leading up to the epilepsy surgery. Plus, a team of medical professionals was assigned to the case who would provide ample support. We agreed to continue the discussion and begin the preparations after the baby arrived on the scene.
Over the course of the next several months, I graduated with my MBA and our healthy baby girl made her grand entrance. We settled into a new routine and began preparing for our son’s surgery. This included me going back to work sooner than originally planned, so I could take time off in the coming months to prepare for the surgery and later in the year to care for our son.
We were showered with love and support during this phase of our life. This included our parents, who were there for us every step of the way, and my sister, a talented RN who happened to work for Phoenix Children’s Hospital. It also included my coworkers, who listened to and prayed for us constantly. Not to mention the incredible support we received from the medical team at Phoenix Children’s Hospital assigned to our case.
Experiencing Peace
As the day of the surgery approached, my boss’s boss called the team into his office to pray for my son, my family, and the medical team. Although I was working for a secular business, God surrounded me with fellow believers in Christ. We had no church home at the time. This was for a myriad of reasons, many of which centered around the complexities of attending church services with a special needs child. Even so, God made a way for us to be cared for by His followers and put us on a path to eventually finding a church home.
The day of the surgery arrived. While there’s a lot that could be said about that day (and might be said in the future), what really stands out is how I felt. Peaceful. I knew right away that I was experiencing the peace of God, which truly surpasses all understanding (Philippians 4:7). I’m a fixer by nature, and I tend to feel uncomfortable when things aren’t in my control. This was certainly one of those situations, yet it didn’t matter.
Rather than driving myself crazy with all the possible what ifs, I chose to turn to prayer, focusing on God’s will and the good in the situation (Philippians 4:6). I was thankful for our medical team. I was thankful my sister worked at the hospital. I was thankful our son’s seizures originated in a section of his brain that made him a prime candidate for epilepsy surgery. I was thankful for a supportive work environment. I was thankful for my husband, our parents, our beautiful baby girl, and everyone else in our lives. I was thankful I was chosen to be our son’s mom.
When the day arrived, we were covered in prayer. I couldn’t understand the level of peace I felt, other than it had to have come from God. It was the only thing that made sense.
I’m happy to report the surgery was a success. Our son is now almost 19-years old and is completely seizure-free. When I look back on this time of my life, what I remember most is the feeling of peace I experienced on that day, along with the people who loved and supported us along the way.
Understanding God’s Love
God is faithful, no matter the trials we face (1 Corinthians 1:8-9). Even if the surgery hadn’t turned out the way it did, God’s love would have remained (1 John 4:16). He would have stood by my side and covered me in His love, as trust in Him provides for the hope that anchors the soul (Hebrews 6:19). He truly is our refuge and strength, a very present help in times of trouble (Psalm 46:1).
It’s because of Him we’re able to say, in the words of Horatio Spafford, “It is well with my soul,” even when we’re facing the most difficult trials. Even if fear would have us believe otherwise. Even if things don’t go our way. Even if … and for this, I am ever grateful.
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