Thursday, November 1, 2012


The past few days I have been overcome with fear. Something seems off in our little boy. An unknown startle, then screaming. Loud, terrified, shot screaming. We scoop him up and love on him, telling him everything's okay. He looks back at us with deer eyes, utterly unconvinced.

This began after he got his two-month shots.

At first we figured it was just his newborn startle reflex. We had read that sometimes it can scare babies so they cry in fear. Odd, I thought to myself. Why didn't this scare him the first two months of his life? I chalked it up to coincidence/startle reflex as it happened very few and far between--usually one time per week or two.

But then Tuesday night happened. The three of us were hanging out in our room, my back to pillows and Elden's back to my thighs, facing me. I was holding his hands and looking right at him. His eyes did something strange. Almost as if he had just heard a loud noise and it startled him, except the rest of him didn't react. No arm flail, no legs to chest like the other times his startles scared him. Screaming.

This time was different. Many of the other times we weren't looking directly at him when it happened, we just put two and two together. This was the first time I had witnessed every second leading up to the exasperated cries. This was different. Is our son having seizures? We went about our bedtime routine unsure of what to do next. Emergency room? Pediatrician? We prayed. While Jon was changing Elden's diaper in preparation of his bath, it happened a second time. We prayed more. We went on Youtube, WebMD, and every other resource we could get our hands on to figure out if what we were witnessing was indeed a seizure.

The jury's still out. From what we read online is if you think your infant is having seizures to call your pediatrician (unless it lasts more than 3 minutes, then call 911). Meanwhile, for the first time in a month or two, Elden wouldn't sleep. Perhaps he could sense our anxiety. Perhaps he just wasn't tired. By 10 pm and after about 5 soothing attempts, we brought him back into bed with us. I laid him on his side next to me and nursed him. He fell asleep in my arms. I held fast while Jon continued to research. I cried and I prayed. I felt so helpless; so hopeless. We stumbled across infantile spasms. "Infantile spasms is classified as a catastrophic childhood seizure disorder, and it's not catastrophic because of the way the spasms look..." read the website. I cried harder. Viewing videos of babies you don't know having seizures is about as difficult as watching your own baby have what you think could be a seizure. It's devastating.
I took this on Tuesday night.
Fear has this way of creeping in when you least expect it, suffocating you with the weight of your greatest worries in a matter of seconds. Your mind travels faster than usual, only to be surpassed by your heart rate. You jump to conclusions using likely-inaccurate online evidence and a lack of professional training. You search desperately for answers, hoping to find out that you're really just overreacting. By the end of the night, Jon became more convinced it was something called Sandifer's Syndrome, which is attributed to reflux. Elden has other symptoms of reflux as well--the hours long crying, especially on days where we do marathon nursing sessions in attempt to soothe him; he often gags while eating (and for up to an hour after he eats); he squirms a lot right after eating and when we try to burp him. As much as Jon tried to offer me hope and reassurance, it's hard to come by in my mind. I've seen some of the worst case scenarios, and I'm petrified.

These are the times I usually cling to Jesus. I tend to become complacent with my relationship with Him when things are going well. It's seemingly easier to beg for help and healing than to remember to give thanks for your many blessings. Fear reminds you of that. You are helpless without Christ. Nothing is a greater reminder of this than the prospect of your child possibly having something classified as a catastrophic disorder. Dear Jesus, please let me be overreacting.

We called the pediatrician first thing Wednesday morning. After speaking with the nurses who spoke with his doctor, we were instructed to bring him in for an appointment that day. After examining him and us trying to describe what we had seen, she said it was difficult to know what (if anything) was going on. Her conclusions were to log the frequency whenever we suspected one and if we happened to catch an episode on video or his behavior changes drastically after (such as he becomes aloof or very tired) we needed to come back for a neurology consult. So now we wait. We wait and we try to trust. I'm trying not to look at him like a tiny time bomb, but it's so hard not to. I dread the prospect of another one. I dread what its presence could mean.


  1. Danielle, I am so sorry. I cannot even imagine how hard this is. I am praying for you guys to have wisdom, peace, and comfort. And for Elden - for protection, for health, for security. Perhaps you can have trusted friends come over and pray over your family and over your house?

    1. Thank you so much, that really means a lot. Peace seems to come and go. I'm trying to find solace in the fact that the pediatrician wasn't overly concerned based on what we were describing. Based on his lack of physical reaction of the rest of him, though, I'm gradually convincing myself it might be something like reflux where he has a sudden pain in his throat and that causes the reaction. Time will tell I guess.

  2. Praying for you all Dani! Although I've not had the same experience, I am all to (freshly) familiar with being scared for your baby's life and future. Continue to cling to Jesus. Remind yourself over and over again that our God is good, He loves you, He loves Elden more than you do, He has good plans for Him. Elden is his son first. Nothing is a surprise to Him, as he knows everyday of each of your lives. No matter what this turns out to be, He is bigger, He is aware, He is prepared, and He is still good.

  3. Don't you just wish they could talk to you sometimes and tell you what's wrong? Praying for your family!