We’re still here. I thought we were done, though looking back on it a voicemail from a doctor saying our kid was a-okay is a little bit like your boyfriend breaking up with you via text.
We still have peace. And we’re still dancing [maybe it’s more of a sway].
About a week after Landon got the all clear that his EEG and Brain MRI came back “normal”, he had another seizure. We were riding home from Lucy’s dance class and he seemed more tired than he should have been. He was dozing a bit when sat straight up, his lips turned blue, he slumped forward, and his eyes begin to flutter.
This time it wasn’t as scary as the other times. I just kept saying over and over, “I can’t believe this is happening again.” The episodes only last thirty seconds or so and the doctors have assured me that even though his lips are blue he’s still breathing. They also tell me that because he’s not having the kind of seizure where he shakes and because they’re short, they’re unlikely to cause any developmental delays. Those seem like good things.
I went to church Sunday with a heavy heart. I just really didn’t know what to do. By the time Chuck had the presence of mind to get his phone out to video Landon, the seizure was over. And we felt like the doctors had told us there wasn’t really anything they could do without a video.
So I prayed. And I had other people pray for me. And I let people in on my struggle. And I cried, wept, and realized the shame I was feeling. Yeah, shame. Shame that I couldn’t get a video of it. Shame that I wasn’t taking care of him. And I accepted healing. And I rejected the shame.
The next morning I tried to pray for Landon. I love those blissful moments before the kids are awake. The air is quiet and draws out your thoughts. Coffee seems to warm your soul and words seem clearer, thoughts less crowded.
There was one verse that came almost immediately and stuck with me that day.
“Be still, and know that I am God.
I will be exalted among the nations,
I will be exalted in the earth!”
Hold on. So you’re saying all of this stuff is happening with my sweet boy and I should do nothing? Huh. And you’re saying You can be exalted in a situation like this? Wow. [A friend actually prayed that over me a few weeks ago. It’s crazy to me when prayers are later affirmed through God’s Word.] So… I didn’t do anything. And the craziest thing happened. One of those friend tells a friend about her friend’s friend kind of thing and before we knew it we were in contact with the Neurology Department from the other children’s hospital in St. Louis. They asked me a serious of questions about Landon’s episodes and asked me to transfer over the other doctor’s notes. The told us there was a three month waiting list for appointments and gave us the next available on July 10th. I felt thankful that the last words the nurse said to me were, “We’re going to help you find answers.”
And then, mercifully, the next day we got a phone call that there was a cancellation and an opening the following day. YES, we’ll take it.
The morning of the appointment came and I felt God once again speaking to me in the quiet.
“I rejoice, because I have perfect confidence in you.”
[2 Corinthians 7:16]
Confidence that God will direct us to the right doctors. Confidence that His hand is at work. Confident that if I put my trust in Him and try to trust and follow Him, He will direct our paths. He loves us and longs to care for us. And so, rejoice I will. Dance I must. Life is full and infinitely blessed.
So we saw our new doctor and I really liked him. Better still, Landon really liked him [kids are great character judges]. He asked me super specific questions about the “spells”, but unlike last time it didn’t feel like the doctor was trying to catch me in a lie. He told us the episodes Landon’s having are definitely seizures. They’re not ready to diagnosis him with epilepsy yet, but they gave us two options. We could either start him on anti-seizure medications now or wait until after the next seizure. We chose to wait. We’re also having another EEG done, which should give the doctors more information about which anti-seizure medicine would be most helpful.
They gave us a lot of statistics and a lot of information [also different from our last experience]. Six out of every ten EEGs of epileptic children come back normal, so the test is not a great indicator. But on the bright side, the kind of seizures Landon is having are the ones children most often grow out of. Only 0.5% of adults over the age of 25 still have them.
I left the appointment feeling hopeful. Feeling taken care of. That this, these seizures, aren’t something that can control us. They don’t mean we aren’t taken care of. I cannot let them make me feel like less than a loving mother following after Christ. Seizures will not hold us captive. We will not let fear steal our confidence.