In Nikki's Blog

Life has a funny way of catching you off guard when you least expect it. This saying is so cliche and to be completely honest cliche sayings annoy me. I think they are cheesy and unoriginal and I am generally someone that can formulate my feelings into words fairly well. Typically when I am going through something, I go to my computer and just write. I express it best through words and there is something so ridiculously theraputic about this process for me. Last week was mentally and emotionally challenging to put it lightly. And the words, well, they just weren’t there. I had nothing. I would sit down to write and for the first time in my role as a mother, I had nothing that I could put into words. It’s no secret that our family has had its fair share of trials and that we have been put to the test numerous times. We are an open book with our story and feel that by doing this is where you can reach people walking a similar journey or simply by providing education to those who haven’t been subjected to people with different abilities. Last week, I felt pressure and that was simply because I always share updates regarding our family, the highs and lows and I felt an obligation to myself and others to share our most recent news about Chase Michael.

Here goes, for the last couple of months, we have noticed Chase having these “episodes” that have progressively become more evident and longer in duration. When we first noticed an issue going on, it was that he would go cross-eyed and we were able to correct it right away by re-directing his attention elsewhere. After a couple of months and waiting on an eye appointment (thanks COVID) we noticed that the problem wasn’t happening anymore. It was honestly like the problem had just gone away. It wasn’t long after this that we noticed that Chase would be staring off into space, almost like he was day-dreaming. And most recently, it has turned into his eyes rolling upwards for 10-15 seconds where he is blinking but unresponsive to his name, sounds, and touch. He is basically paralyzed for the time period and then he goes back to exactly what he was doing prior to the episode occuring.

With all that being said, you have to understand Chase and the type of personality that he has. He is a very, very bright and intelligent 5-year-old, with an imagination as big as the sky. He loves attention, pushes boundaries, a comedian without effort as I’m currently watching him shake his butt in the mirror and laughing at himself. With all of the positives that he has, it is no secret that for months now, Chase has been having an increasingly hard time focusing, following directions, and staying on task. He also has Autism and I’m sure somewhere in there ADHD that has not been formally diagnosed. There is just a lot going on in his brain, all the time. So while all of this was going on originally, we truly felt like some of the things that were happening directly linked back to Autism. Turns out, we were completely wrong. We totally missed the major red flags that Chase could potentially be experiencing Abscence Seizures. I was able to get a video of Chase having an episode and send it to his doctor, where she confirmed that she was concerned that it was in fact a seizure.

Typing out that last sentence is still extremely hard to come to terms with, let alone say out loud. I have read all about Abscence Seizures and there is so much hope that if this is in fact what is going on, that Chase can outgrow this. Huge, huge relief to my momma heart. But the thing that is truly bothering me is that, I totally and utterly missed the red flags. I was aware that something was going on and I missed it. I am honestly just sick to myself over this, especially when I go back and watch how obvious it is in the video recording I have. Brett tells me over and over that we both missed it, not just me. He continually tries to convey that this is something that has gotten worse over time and that if it were as evident a couple months ago as it is now, that we wouldn’t have missed it.

I can’t help but having this feeling of guilt. Guilt because I would get so frustrated with him when he wasn’t listening and lose my patience multiple times a day. All I keep thinking about was how he knew I was upset with him and what if he was having an episode during those times? I know that I am going to drive myself crazy by playing out all of these situations in my head. I know that I have to stop because the most important thing right now is to focus on what we do know and move forward. I know that the only good I am to Chase is by pulling myself out of the funk and saddness that this news has brought and suck it up to ensure that we get the best quality care possible. There is nothing that I can accomplish by being sad and slightly depressed because of something that has already happened. But man guys, I am struggling to let go of the guilt I am carrying. I am struggling pretty bad.

We have a week to go until we see Neurology. One week until we have some definitive answers and hopefully an action plan to move forward. I know that our story is messy, it’s tough and sometimes it’s easy to sit back and ask, “why me, why do my kids continually get the shit end of the stick?” But a long time ago I promised myself to never become victim to a circumstance. Never let something hard steal your joy and happiness. It doesn’t mean it’s not hard and it sure as hell doesn’t mean that it doesn’t flat out suck. It just means that you have to be brave and walk forward as best as you can. Pain is where growth takes place and I have grown so much through grueling situations that made me into the person I am today. This part of the story is not something I wanted to walk through, I never want to see my child have one more struggle added to the list of things that he already deals with daily. But I can tell you that we are tough and tough times don’t last, tough people do.

Jeremiah 29:11

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