I really wanted to come on with Ella and record a video for you guys but these last two days have kicked my ass. My body looks and feels tired. Plus today marks four months since dads been gone and I have been a basket case. No one wants to see my swollen face.

These last two days I legit felt like I am living the movie Inside Out. For those of you who know the movie, you know. For those of you who don’t it’s a movie about five major emotions (joy, sadness, fear, anger, and disgust) inhabiting the mind of a preteen girl named Riley. I was Riley and like any preteen girl, I was all over the map.

Yesterday was going well. Jack did not want to nap but things were quiet at home. Not a lot of texts and or calls came in during the morning. I had a decent amount of time to shower in peace. There were actually clean and folded clothes that I had no trouble locating. By all accounts in my simpleton life, it was a shaping up to be a glorious day.

We had Ella’s virtual visit with the new neurologist at 2 pm so I had to go and pick her up from school. When I arrived her amazing speech teacher was waiting with her to show me all the fun things they have been doing during her assistive communication device trial. The Tobii is a magnificent machine and Ella has been responding well to it. My only hope is that she keeps up the good work and we are able to get her one for the fall. I really do enjoy the enthusiasm of her speech teacher and I know Ella enjoys her as well. Little sassy pants didn’t want to wait though. She was kicking me from her stroller, and laughing, the entire time.

The ride was going well until we were about half way home. Every time I ask Ella a question in the car, I turn around to see her reaction. This particular time, I don’t know what the question was but I do know that when I turned around Ella was having an episode and was right in the middle of it. All I could see were the whites of her eyes and her body was limp. I grabbed her leg, with one hand still on the wheel, and started screaming her name. I wasn’t in a spot that was safe to pull over and knew if I tried, I would be putting us both in danger. I found a pizza place quickly and whipped in to the parking lot. There was a man in a car a few spots down who must have thought I was on fire the way I jumped out of the car. Ella’s seat is on the passenger side so I ran over to her and grabbed her head. It was bad and it felt like she was “gone” for an eternity.

When she finally came back to me I looked at the clock. From the time I had jumped out to the time I had her back only a minute had passed. One minute. The episode didn’t start too far before I turned around and saw her because I had been asking questions or checking her in the rear view mirror. Most times it is turned toward her. After her last episode in the car, I got extremely nervous and like to have my eyes on her.

She was shaking when it was over and I just stood there holding her hand, watching her, and talking to her. It must have been close to five minutes. When I knew she was okay and one single tear ran down my cheek. I took the deepest breath I could, gave her a kiss on the cheek, and got back in the drivers seat. I called Steve because I needed him to calm me down. He has and always will be the one to tell me that everything is going to be okay. Even if he is unsure himself, he makes me believe that it will be and carries that worry for both of us so I don’t have to.

As soon as the car started moving Ella fell asleep and asleep is how she remained for all but five minutes of the next hour and a half. We made it home and got through her neurologist appointment, having to wake her up once for the doctor to check a few things, and right before Mara came she was up and ready to go. Funny thing is that despite that exhausting episode and the sheer lethargy she has after it, her session with Mara was one of her best. I will never quite understand the magnificence of the human body.

I was scared and as a mom of a special needs child I feel like being scared could potentially be a daily occurrence. Sure Ella’s unknowns make me fearful but this was a whole new level. I wasn’t sure Ella was breathing in that car seat and until I could get out and get my hands on her, my mind went to the darkest of places.

After speaking with the new neurologist we have a slightly different plan than before and we feel like it is the best plan that we have had in a long time. We will do what needs to be done to carry out said plan and hope it yields some answers. We can only hope. I will say that this new doctor provided a different perspective and addressed every single concern I had regarding Ella’s treatment plan thus far. I promise to write a post about it once I finish unpacking it in my brain. It was a lot to process and is still evolving.

Today I was welcomed back to crazy town the second I woke up. Ella’s bus nurse showed up late to the garage and the bus left without him. Not mad about that at all. They had other kids to get to school. After a slightly colorful conversation with the agency I was told there would be a nurse on the return ride home. Only after what happened yesterday in the car there was no way I was driving her to school alone. Steve had a doctors appointment and wasn’t home. The silver lining was that a plan was put in place and hopefully this won’t be something that happens again.

Multiple calls, emails, therapies, scheduling of appointments, texts regarding nursing, and several loads of laundry later, life at the Zurlnick homestead has returned to its normal chaotic self. One more day until the weekend. My favorite two days, where calls, emails, and messages decrease dramatically.

So many of you have reached out in the last few days. It’s like you knew I needed to be lifted and your kind words and thoughts have done just that. Only one of you came in hot with a pool fundraising idea though. Let’s put our heads together. 🙂 #ellaneedsapool

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