Life As We Know It

If you were to look into the windows in our house of life, we would appear to be a “normal” family, but the reality is, we don’t feel normal. Most days are spent figuring out what will help Kyle on that day; how can that brain of his be calmed. A lot of days, we fall back on others to give our kids the attention they need because I’m burned out from trying to help Kyle, and he’s in complete overwhelm mode with all the chaos kids bring.

I met Kyle through a set of mutual friends in May of 2014. We quickly hit it off and started dating almost immediately. When I met Kyle, he was quirky. He had little twitches, made silly sounds when he would scratch his nose, and out of nowhere would say things like, “boom-shwing.” At the time, I didn’t know there was a reason for this behavior—I just laughed and thought how silly this guy was. 

As things got more serious, I was told that Kyle had a traumatic brain injury. Brain injury? What did that mean? 

On July 6, 2009, a truck that ran a stop sign struck Kyle. When Kyle was hit, his vehicle spun which caused Kyle’s brain to spin. When his brain spun, it disconnected the neuroreceptors in his brain and injured the frontal cortex of his brain. Kyle had to relearn how to walk, talk, and feed himself again. Due to his injury, he lacks the ability to empathize and be compassionate. I was told that Kyle is a completely different person than he was before his brain injury. To this day, I still believe I have an advantage in that I didn’t know Kyle before his injury because I cannot compare him to who he used to be. 

I can remember his family sitting me down and talking to me about what life with Kyle would be like, and asking if I was prepared for what that looked like. Me, being the determined woman I am, said yes. 

We married in May of 2015 and had our first child in August the same year. We were doing what was thought to be impossible—living a married life with a child. In November 2018, we welcomed our second child into the world. 

To tell you that being married to Kyle is a walk in the park would be a lie. Being married with kids creates its own challenges, but add a brain injury in the mix, and it’s even more challenging. Being married to someone with a brain injury is incredibly challenging. There are days when it would sometimes be easier to walk away because it’s so draining, frustrating, empty, and unpredictable. There are days when Kyle literally runs away from home because our busy life is too much for his brain to process. There are days where I feel like I’m walking on eggshells because I don’t know if what I say or do will set him off and put him in a negative place (I should clarify at this point that Kyle is NEVER EVER aggressive to our children or me).

The past couple of months have been hard. We knew that bringing a second baby into the world was going to cause Kyle to regress, but we never expected it to be this severe. I’ve never seen Kyle in such a bad state. Some days, Kyle cannot be around our kids at all, because they are noisy and in his space, while other days he can be present so strongly for them. Kyle can be so good brain-wise one minute and the next he’s smashing his cellphone because something didn’t work right, and the smallest thing can trigger a negative response in his brain.

Now that our oldest son is getting older, he’s starting to clue in on Kyle’s behavior when he’s had enough. He’s three-years-old, and I tell him, “Daddy’s head doesn’t feel good right now” because that’s all his brain can comprehend at this age. And honestly, in those moments, Kyle’s head really doesn’t feel good. I imagine Kyle’s brain to be like a box of cords that have become more tangled over time when more cords are added; they quickly become tangled and take time to untangle.

Being married to Kyle has taught me a lot. It’s taught me that it’s okay to ask for help. It’s taught me that in the moment, it’s okay to ask for some space to gather thoughts to prevent blowups, it’s taught me to have grace when Kyle can’t help with something, and most of all, it’s given me plenty of opportunities to practice patience. And while I’m still learning how to be patient, I’m so proud of how far I’ve come compared to when we were first married.

It’s hard watching Kyle go through this knowing I cannot take his brain injury away from him. It’s hard watching your spouse struggle so much to cope with life when you know that it’s his brain injury that’s taken over and in those exact moments, you cannot help him.

I’ve been married to Kyle for almost four years now, and while they’ve been the most difficult years, they’ve also been the best years. And while I feel like I know so much about Kyle and his brain injury, I’m constantly continuing to learn more and more about it. I’ve learned more about TBIs in the past month than I have in the whole five years of being with Kyle. 

We rely heavily on our parents to help us whether it’s with the kids or to help Kyle process his thoughts. They also take Kyle to appointments and give me breaks. I cannot stress enough how incredibly important their support has been because without them our life would fall apart. 

We all have a story being written here. And while there are good days and bad days, we continue on this crazy journey of life as we struggle with TBI. This is our “normal,” and it’s uniquely ours. Every story is different, and we can all learn from each other.