A horrible noise jolted me out of sleep – and it was coming from my son lying in bed next to me. It was a few days after Cody’s 4th birthday; he had also done this a few months earlier, making terrible choking sounds in his sleep, which stopped after about a minute. Cody had had a febrile seizure (one due to a fever) when he was 2, but these two recent events were different: no fever, he (thankfully) did not stop breathing after it, and he regained consciousness once it was done.
Panic attack
This time, though, he could not form words which was just as terrifying as the sound he’d been making had been, because this was the child who said “suppository” at age 2 and “I’m indefatigable” into his monitor during naptime.
I am not sure if I called my husband first or 911, although I did manage to call both. The EMTs cleared Cody to go to a clinic and to not have to go to an emergency room. I drove Cody to the local Urgency Room where my husband met us.
By this time, Cody’s speech had improved. He no longer dragged one leg behind him when he walked but was actively climbing on the exam table. After I explained what happened, the doctor looked at Cody then at my husband as if to say, “Is your wife nuts?” I had described a seizure, but the doctor didn’t see the lethargy exhibited after most seizures. My husband confirmed Cody’s speech had been almost impossible to understand on the phone so the doctor told us to wait while he left the room.
I heard him call our clinic and say, “This is the second one…” I did not know what that meant but it seemed significant to him. He convinced our primary doctor to fit Cody into her schedule that day and, a few hours later, we left her with a referral to a neurologist – and a caution that it would likely take weeks to get scheduled. As we were driving home, the neurology clinic called. They had had a cancellation the next day and she asked if 8:30 a.m. work would. Yes, that will work!
Struggling for breath again
The next morning, we checked in to the neurology clinic and sat in the lobby to wait. I was having a hard time breathing and did not want Cody to know how scared I was, so I went into the bathroom. I stood in there wondering, “What do I believe? What is Your promise for me today?” I decided to open a devotional email from that morning that I hadn’t read yet. It stated, “Perhaps…the strength we are looking for today…[comes] from…faith in a God who keeps his promises.”1 It then ended with Romans 8: “Nothing will separate us from the love of God through Jesus Christ.”
What are the promises in this? God loves me. He does not want bad for me or Cody. He is making a way for me in my storm. Ok, time to take a deep breath… and walk out into the storm.
“Cody has epilepsy.” After a brief exam, that is what the doctor stated, rather matter of factly, kind of like diagnosing a cold. We learned that epilepsy is diagnosed when someone has had two or more unprovoked seizures (not due to something else like a fever, for example). My husband and I both sat there silent and stunned.
I know the doctor meant well and had likely assessed that Cody didn’t seem to have a severe form of epilepsy. But my mind went to the couple at church whose 24-year-old son shuffled when he walked, was basically nonverbal, and wore a handkerchief around his neck to catch the drool. He had epilepsy. He started having seizures at age 2, which doctors were never fully able to get under control and, consequently, suffered brain damage. That’s what was going to happen to Cody? This amazing brain was going to be pummeled year after year by seizures?
Promises
The doctor asked us to come back in the afternoon for an EEG. I assume we went somewhere for lunch but I don’t really remember. I do remember walking into the EEG room and the technician gluing wires to Cody’s head. Next, she performed a strobe light test and hyperventilation test to see if either of those triggered a seizure. She then tried to get Cody to go to sleep because EEG patterns often change during sleep. Not surprisingly, Cody did not sleep.
It turned out there were plenty of spikes while Cody was awake to confirm the epilepsy diagnosis. The doctor said it was a type of childhood epilepsy that is fairly common and that most children can outgrow. It usually results in seizures during sleep, a few times a year. As the technician began removing the wires from Cody, the doctor and I moved into the hallway.
The doctor said he would start Cody on medication if we wanted. But, he added, since the seizures were 4 months apart, did we really want to start Cody on daily medication, medications that can have bad side effects? I said no, numbly, still stunned that we were talking about managing Cody’s epilepsy. Wondering how I was supposed to make this decision. Wondering why the doctor was asking me about medication.
Then the doctor said, “There will be more seizures. Just be prepared for that.” A guarantee. A promise. There will be more terrifying, heartbreaking seizures…
What is the promise for today, God?
For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:38-39
Not even epilepsy.
..
1 Living in God’s Story reflection by Renae Boehmer dated 10/23/2014. https://livingingodsstory.wordpress.com/
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