He was over at a friend’s house and had a seizure. They were playing football in the house (because this what we do), and my friend heard the ball hit the wall. She turned around at the exact moment that he started to fall down. She managed to get to him before he hit his head on the ground, and he started seizing in her arms. They called the paramedics and called me. When I answered the phone, I heard a bunch of screaming in the background. I thought “Wow, they’re having a great time!” When she told me what was happening, it felt like someone had sucked all the air out of my lungs.

He has always been a healthy kid- sprinkled with your random childhood illnesses- an occasional headache mixed in with injuries from playing too hard. Nothing serious- just normal kid stuff. Seizures? Definitely not.

We met them at the ER and started the testing process. It started with an MRI and CT scan.  He had a rather large bump on his head so they initially told us that he probably had a concussion which caused the seizure. He didn’t remember hitting his head or having a concussion, but that was the working diagnosis. The testing in the ED was all normal. We scheduled the appropriate follow ups and began what we thought would be a short journey into this issue. If it had been caused by a concussion,  his symptoms should resolve as we get further from the initial injury and the brain begins to heal. Thanks to a wonderful friend, we were able to get into a pediatric neurology clinic the following Monday. (This is a literal miracle) We met a fantastic NP who set us up for the next round of testing- an EEG. This is where they place electrodes on your head and monitor your brain activity. They monitor brain waves while you’re resting and while you’re doing activities to that could cause a seizure. We did the testing and expected to see a clean report given the initial diagnosis.

Instead, the EEG showed an ‘abnormality’ during his exposure to the strobe light. It was then recommended to do a 24 hour EEG to explore this ‘abnormality’.  We scheduled this as well, but we stood in confidence that he was fine. He also had a reaction to the strobe lights at church one weekend.  It was not a seizure but it’s almost like he blacked out.  He had forgotten a good chunk of the day.  I suddenly became very nervous about sending him anywhere without one of us. Rationally, I knew that he had lived almost 12 years without this issue, but now, knowing that he had one, I was scared that it would cascade into a shower of seizures. I felt that as long as he was with us, he was fine. Dumb, right?.

We did the 24 hour EEG in the hospital. Prior to discharge the next day, we met with the epileptologist, and she recommended that we start medication right away. I was in shock. We had an appointment with the neurologist the next day, so she suggested discussing it with him at the appointment.  I asked her about the initial diagnosis of the concussion, and she confirmed that the testing results were not in line with that diagnosis. It was an unfortunate overlap of events. During the testing, it was noted that his brain was creating spikes throughout the day and while he was sleeping at night. When we met with the neurologist the next day, he explained everything in greater detail. My son told the neurologist about a sensation that he gets every so often- a tingling feeling, followed by a headache and sometimes nausea. He’s had it since he was 8. The neurologist explained that that was probably part of a seizure aura. The neurologist said that it was very likely that my son would have another seizure if he did not go on medication. We prayed about it, sought counsel, and moved in that direction.

There are so many things to be thankful for during this journey. I was thankful that it happened at a friend’s house—a friend that has known him since he was a newborn and cared for him like he was her own. I am thankful for friends and family who wanted to drop what they were doing and meet us at the hospital. I am thankful for loving friends that opened doors to get us to the right healthcare providers. I am thankful that every person that we interacted with during our testing was caring and pleasant. I’m thankful for the volunteer at the hospital that played XBOX with him for 2 hours.  I’m thankful for the nurses and techs that snuck a gaming system into our room later that day- and gave us all the good menu recommendations.  I am thankful for all the pharmacists in my family that researched drugs and side effects. I am thankful for the support group of people that has “magically” appeared. I am thankful for the peace that we had as we went through it all.

I am giving you the pared down, cliff notes version of this journey. When it first started, we were confident that this was a one- time thing. My husband and I were stepping out into marriage ministry for the first time, and we were sure this was an attack meant to distract us.  His seizure happened the week that we started our assignment.  We were confident that the testing would be clear and show no issues. We were confident that God had healed him and that he would not need medication. We prayed over the course of these months, and we prayed from a place of victory- confident that God was our savior, healer and restorer. We didn’t question why this was happening, but we knew in the end that we would be victorious.

The results of the tests felt like defeat. Putting him on medication felt like defeat. I was concerned about all of the side effects. It felt like I hadn’t been a good enough Christian. Maybe I didn’t pray enough. Maybe I should have fasted. Maybe he should have fasted. What was happening to my faith? How could I be so wrong? What was going to happen to my son’s faith? How do you explain these tests of faith in a way that a 12 year old could understand? How do you explain why when you don’t even know why? I felt frozen- just constantly thinking about what I could have done differently to create a different outcome.

My son has been on medication and doing well. The side effects seem to be minimal He has had no other seizures. We have told him that we believe that he is healed and part of his healing is to do what he is able to do- including taking the medication. I don’t have an explanation for why this is happening, but I know that it’s going to be a testimony for my son. I know that God can use this story. But, if I’m being honest, I was still grappling with this up to a month ago. 2 + 2 always equals 4. Why didn’t submission + prayer always equal healing? I didn’t want it for me- I wanted it for my child.  God very quietly said to me “Put your faith in the peace that you had during the journey, not the outcome. I’m in the peace.” I thought the peace meant that I would get the outcome I wanted.  What I didn’t realize was that the peace just meant that God was with me- regardless of the outcome. My prayer for my kids has always been that they will know God in a way that is very real to them.  I can only believe that this is part of that process.  It was prideful of me to think that I could control the outcome by my own action.  God’s plan and perspective is so much greater than that.

One of my favorite verses is Isaiah 26:3- “You will keep him in perfect peace, Whose mind is stayed on you, because he trusts you”. For now, I have to learn that God is in that peace, regardless of the outcome.

~Shiney