Today was a hard day! I tried to fill it doing as much as I could to avoid dealing with the reality of what this day brings. Second to Ella being rushed to the NICU two days after she born, today marks the anniversary of the second scariest day of my life.

Three hundred and sixty five days ago tonight, I was on my way home from the hospital after Ella was admitted. Steve is the stronger parent, by far, when it comes to rational behavior during the most stressful of times. He stayed with our baby girl that night to make sure that she was okay and to be there if anything else happened. Plus, he was used to working nights and I wanted someone awake keeping an eye on her.

For awhile my most vivid memory of today was walking into Ella’s room, seeing foam come out of her mouth, and watching her little body shake in ways that I have never seen a body shake before. If I close my eyes and really think about it I can replay the entire first moments I saw her, as if I were standing right there in that moment again. It was terrifying, and every medical (and non medical) mama who has witnessed their child go through something so traumatic will tell you that medical PTSD is a real thing.

About six months after Ella had her horrifying seizure, more memories from that day came flooding back. I remember CJ walking into Ella’s room behind me and standing over her as I went into a sheer panic. I could hear the panic in his voice when he asked me, “mommy, is Ella breathing?” I screamed, “I don’t know.” He then asked me, “mommy, is Ella alive?” I immediately responded, “yes”. I knew she was breathing at that point but I did not know what would happen next. I yelled her name over and over again as I turned her to her side and prayed for my baby to look at me and smile. It never happened.

She was shaking something fierce and I knew I needed to get Steve. He was my person. I knew he would know what to do. I had pillows behind her so she couldn’t roll on her back and I told CJ that we needed to get daddy. He said he wanted to stay with Ella. He held her and called her name while I ran in and got Steve. He had worked the overnight and he was sleeping. For whatever reason Jack was still sleeping too. I ran in and told him that something had happened with Ella and he needed to come to her room. I said no more and ran back to her. Within seconds he was behind me.

After Steve assessed the situation and Ella was starting to come around I called a friend, who was a nurse, and told her what I had seen and the current state she was in. She calmed me down and explained that what I was seeing was the aftermath of the seizure and warned me that it could last for awhile. Once she knew I felt better about how Ella was doing, she told me to call the police station and tell them I need an ambulance to come. Ella needed to be evaluated. I called from Steve’s phone and she stayed on the line until they arrived. It was minutes from the time we called. I know I thanked her multiple times for all she did that day but she will never truly know how much her calming voice meant to me. I can only imagine how I must have sounded on the other end.

It was decided by the medical team that Ella would be taken to the closest hospital with a pediatric unit in the ER. Before she was loaded in the ambulance the paramedic asked me if I was going to ride with Ella. I matter of factly told him that Steve needed to be the one to go. There was no way I was going to remember, or process, anything they were telling me and if something happened on the way I would lose it. I know he thought I was crazy, a mother not riding with her child. The fact was, I had two other children I needed to be there for and Steve was in a better mindset at the time. I don’t regret that decision but I have since been questioned by many why it wasn’t me riding with her.

I made multiple calls after Steve and Ella left. To family, to friends, to Dani. I was doing okay until I called my sister-in-law. I just couldn’t get through the conversation and abruptly ended the call. After I hung up, I sat outside and cried. Jack was eating and CJ was watching tv. I finally was able to take a breath and process what was happening. It felt like I was choking on air. Thankfully Steve knew enough to give me minute by minute updates. Dani came over right away to watch the boys, and I rushed to see Ella.

Due to COVID restrictions I had to wait to go in but I sat outside in the parking lot with my mother-in-law for hours until it was my turn. I was itching to get in and finally went and talked to the security guard at the ER entrance. He said he would get a nurse and we could do a “swap”. Steve finally came out and I ran to be by Ella’s side. I sat with her as late as I could and Steve took over the night shift.

Ella was discharged on May 22nd. A year later we are still seeing seizures but don’t know much more than we did then. Multiple EEGS and testing have shown no concrete answers as to what is causing them and we have been unable to find the right combination/dosage of medicine to completely control them. It’s been a year of ups and downs for Ella. However, the love and support we have continued to receive has been consistent and unwavering.

I share these memories in hopes that talking about them helps me heal. I woke up this morning feeling uneasy and anxious. I laughed with Ella before school and hugged her tight, remaining so thankful. Even though just over a year ago her life was different, our love for her today is stronger than ever. I know she knows we would do anything in this world to make her struggles disappear. Steve and I continue to search for answers every single day.

I also hugged CJ a little tighter this morning, wondering how seeing Ella (and me) in that moment affected him. We don’t talk about it a lot but when we do, his memories are just as vivid as mine. He was seven. He should have never had to have seen what he saw. They say children are resilient, and I truly do believe that, but I also know that it’s a memory that will stay with him forever. He saw Ella at her worst and because of that he has become more conscience and understanding of her medical struggles.

May 19, 2020 was life changing for us all.

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