Yesterday when Ella had her worst episode yet, CJ was in the room when it happened. I had just sat down to feed her her, trying to keep Jack from stealing food off her tray, when I saw the blank stare. I could tell she was no longer engaged in what was going on.

As I watched her eyes roll completely into the back of her head my heart sank and I immediately started calling her name. She didn’t respond and slumped over in her chair. It was after a few more times of me yelling her name that Steve jumped up and came running over. He pushed her chair back, held her head up and started talking to her. She didn’t respond.

After what felt like an eternity, she gained control of her body again, became more alert, and was reaching for her dinner. Total, the whole event lasted less than a minute. Once everyone was feeling calm, from the adjoining family room, we heard a quiet voice ask, “mommy, what just happened, is Ella ok?” Steve and I both looked up to see a frightened seven year old boy with tears in his eyes. My heart broke.

We did our best to explain to CJ that Ella might have had a seizure/episode and for a short time was unresponsive. He asked what would happen if she didn’t respond next time and stayed that way? He wanted to know why she was having these episodes? He said he was scared. Steve told him we would call 911 if she was in danger and that it’s okay to be scared.

CJ still seemed upset, but stopped asking questions. We got the littles to bed, Steve left for work, and we were getting ready for our nightly mother/son time. When we came upstairs CJ crawled into my bed looking very sad. I asked him if he wanted to talk about Ella. He said yes. He said he was still upset and wanted to know EXACTLY what a seizure was. (How do you explain that to a seven year old?) I told him it was as though Ella was in a fog and her brain went to sleep for a few seconds. He must have asked me twenty times if she was going to be okay. He then asked me how we can make her better. He wanted to help.

So we talked about the EEG, what is does, what it looks like, and when she was getting it. I showed him pictures of the last time she had one, he asked a few more questions, and then told me he agreed we should have it done. Thanks bud. After he was done asking alllllll his questions he crawled over to me, grabbed my arm and we just snuggled. He’s such a sensitive boy and really does care so much about his sister. I am certain this will be a topic of conversation for a while. We ended the night watching a movie and snuggling.

I was up most of the night tossing and turning and woke up after three solid hours of sleep to Ella screaming. I was able to calm her, bring her downstairs, and was able to start getting her breakfast ready. About two minutes after I put her in her chair she had another episode. This one was different and lasted a very short time. She went into a blank stare and her right arm was shaking. I got her back quickly and CJ was there with me the entire time talking to her. When it was over, she ate breakfast and then fell asleep for an hour on the couch. I am going to reach out to her neurologist today and let her know. She seemed to be ok with the EEG timeline but will keep her posted on what’s going on to see if she wants to move it up.

Ella had a good day otherwise. She was laughing and happy most of the day and took another short afternoon nap. The family spent some time hanging out with her in her room and she got a kick out of watching CJ play fight with me. It’s always nice when we get to hear that, from the belly, Ella laugh. She thrives being around people, so as long as she is in a good place, we make sure she is around us and engage her in all our activities.

Because CJ was feeling sad, I thought it would be nice to take a trip over to my sisters today so he could see his cousins. It’s been months since they have spent significant time together and he’s been itching to play with someone outside the family. They rode their bikes and had a water fight. All seemed to be going great, until it wasn’t.

CJ told me he was bored and wanted to leave. Being bored was impossible because there was no shortage of things for him to do. I know he’s struggling and trying to make sense of all that is going on in his world. Covid, home schooling, not seeing his friends, Ella having these episodes, missing his extended family, and being home all day. I am feeling overwhelmed and stressed. I know, despite trying to not project it, he’s feeling it too.

We are ending the night on a good note. Jack went to sleep quickly and I got to spend some time hanging out with my Ella. We talked about her day and just laughed and laughed. I am exhausted but Steve is home tonight and we promised CJ some quality time.

Keep the prayers coming. They are so very much appreciated.

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