The last week or so I have not been getting much sleep. My mind has been racing worrying about Ella and CJ has been fighting me more and more with his school work and google meets. Suddenly he is a boy genius and is telling me he knows it all. Jack is non stop. He is into almost everything he can get his hands on, and has amazingly discovered how to open one of the gates intended to keep him confined.
Minutes run into hours, hours run into days and I constantly think of all the things that need to get done. Somehow sleep or rest don’t come close to the top of that list. I have never been one to follow a schedule and I am sure most of you can attest to the fact that I am always late. Now I just blame my kids, but truthfully I have never been on time or early for anything. Oh, I lied. I was early to my wedding.
Even with the best intentions, life gets in the way of my best laid plans. An ideal day would be spending time with my children, while still completing some much needed household chores. The day started out wonderful. Jack slept until 8 am, Ella woke up smiling and laughing, and CJ actually did something without being asked. Two of those three are miracles on their own. It seemed like the groundwork for a pretty decent day. I even managed to wash, fold, and put away three loads of laundry by 11 am. I was on a roll.
Around 2:30 pm I decided it was time to shower so I brought Ella up to relax, put Jack down for a nap, and went upstairs as CJ and Steve prepared to play Minecraft. Dani arrived at 3 pm and brought Ella down for a snack. In a span of ten minutes time, Ella had two episodes. Dani managed to record them and my heart shattered watching the video. The second one was long, and Ella really struggled to work her way through it. I am certain she is having seizures. I can’t imagine what else it could be.
Thankfully, those were the only two she had today, and despite scaring the crap out of me, and I am trying to focus on the positive. Dani was finally able to record them and I was able to immediately email the neurologist. I have been checking my inbox every thirty seconds since to see if she got back to me. Still, nothing.
The rest of the day ended on a high note for Ella. We sat on the couch after dinner and just laughed and laughed and laughed. We got her laughing so hard that she started hiccuping. Her laugh is the kind of laugh that almost forces you to laugh with her. It was what we all needed to end the night on a high note. She was getting a little fussy as the night progressed but Dani was able to bathe her and put her to bed without any further meltdowns. These episodes make Ella so tired yet she fought her way through tonight to hang out and let us know she was ok. I keep telling myself that this will forever affect me more than her. I am happy to carry that weight on my shoulders if it means she doesn’t have to. I am not even sure she realizing what is going on.
As I sit here, I feel this weeks stress everywhere. My head is pounding, my body is sore, and my eyes are so sleepy. Steve keeps reassuring me that Ella is going to be okay. I have no doubt about that. There has been nothing that Ella has gone though that she hasn’t handled with perseverance and grace. She truly is a warrior.
Today I was short with CJ and know I didn’t get to spend as much time with him as he deserved. He made it clear in a number of different ways that he didn’t feel as loved as Jack and Ella today. That breaks my heart. I know he also needs me to be there during these uncertain and confusing times and I know that he is scared. Before he went to bed we talked a little and I made sure he knew how much I love him. I also told him I will try harder to work on balance and make sure everyone gets equal mommy time.
For now, I need to sleep. Tomorrow I will try harder to find that balance and pray for brighter days. Today wasn’t the best, but we made it through.
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