Who I Am Meant to Be

Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.

Bernice Johnson Reagon

When my son started having seizures, I was paralyzed. I was afraid. I was helpless. I was there physically but didn’t know how to be emotionally present for him or my wife. I had disassociated from the situation, leaning into my job and the mechanics of keeping a household running. My wife became the full-time caregiver in a new city without any family to support her through my son’s most challenging times medically, intellectually, and emotionally.

After years of therapy, I still struggle with the semantic debate about whether to say I was afraid or I felt afraid. But looking back, I think I was both because while those words described how I was feeling, they also described my actions. And inactions.

It was an impossible time, and I committed to doing better. Over the years, I became a better partner and father, but I had a lot of work to do to repair the damage those years did to the relationships in my life.

A few years ago, my wife had health challenges that limited her capacity for physical activity. Rather than distancing myself from the situation, I tried to lean in. In addition to going to work, I took on most of the responsibilities around the house. I thought showing her I could care for her would be enough. But the same lack of emotional connection persisted. She was cared for but wasn’t receiving what she needed and deserved most.

Being the parent of a child with special needs is challenging enough. Coming into the situation with trauma and fears makes the situation infinitely more complex, dangerous, and demanding. I know families who have been ripped apart by it. I also know families who have become stronger, and I wanted to be one of those families.

Rather than paralyzing me, I want these challenges to help me discover who I can be. I want to be the type of person who can show up and be present. I want to be a person who can be vulnerable when the vulnerability is needed. I want to be the type of person who makes a person feel seen who is struggling, or in pain, or needs to feel seen. I want to be the type of person who isn’t afraid to be seen.

I still have moments of doubt, of fear, of wanting to retreat into old patterns. But each time, I remind myself that being present, vulnerable, and truly showing up is a choice. And every time I make that choice, I get closer to the person I want to be.

On the Other Side of the Door

I could feel the tension and energy seeping under the door. I could hear the curse words through the door, some directed at the situation and others at me. I could hear pencils and books being pushed off the desk and onto the floor.

Moments before, I was on the other side of the door nudging my son to stay on task and finish his chores and homework. He had been home for about an hour and still hadn’t finished cleaning his room or completing his homework.

I pointed out the clothes, toys, and trash scattered across the floor. I showed him the overflowing trash and collection of empty soda cans that he had hidden behind the dresser in his closet and his yellow homework folder sat unopened on the edge of his desk.

It wasn’t the first time I checked in on him, and his sigh of frustration got louder each time. He would stand up and begin to clean as I left the room, only for me to return with no discernable difference in its cleanliness.

After the third time, he snapped. He sat on the edge of his bed, and every answer to my questions about his thoughts and feelings included an appropriately placed curse word.

“$*!&#! homework.”

“$*!&#! chores.”

I wanted him to have his feelings, but I knew he wasn’t in a place where he could hear me or talk about them. So, I used my years of therapy to acknowledge his anger and frustration. I offered a few pieces of advice to help him navigate and source his anger, and then I told him to come and find me if he needed help or when he was ready to talk.

That’s when I found myself on the other side of the door, listening to his sounds of anger.

Leaving the situation is often the hardest thing to do. I desperately wanted to make him feel better…to say the right thing to make his anger disappear. But I’ve learned (again, thanks to years of therapy after countless examples of trying to solve everyone else’s feelings) that it’s not how it works. I’ve also learned that staying in the situation and taking the anger, frustration, and attacks is not required in any relationship. It doesn’t serve me, and it establishes and persists a toxic pattern of behavior that will strain or ruin a relationship.

There are times when it is necessary to stay in the room, particularly if there is a fear of harm. We went through that a lot when our son was younger, especially after we got him out of status and went through the myriad of side effects from medications like Keppra. There was little regulation, little impulse control, and a lot of anger. Oftentimes, we would have to sit with him, hold him, and take his rage until it passed.

We have worked hard to get here individually and as a family. The skills we have learned allowed us to identify and process our feelings and to understand and maintain a sense of love, trust, and respect. They allowed me to leave the room.

Ultimately, the most challenging but essential lesson is this: I can’t fix every moment of anger, frustration, or struggle my son faces. What I can do is create a safe space for him to process those feelings, knowing that I’m always there on the other side of the door.

It’s not about being perfect or having all the answers—it’s about showing up, staying connected, and trusting the work we’ve done as a family to guide us through. Healing isn’t linear, and neither is parenting, but each moment like this reminds me of how far we’ve come and how much strength and love we’ve built together.

Guilt, Shame, and Fear

I recently stumbled upon a reference to how cultural anthropologists categorize societies based on how they control behavior in those societies as guild-shame-fear.

I pulled these descriptions from the always dependable Wikipedia:

Guilt Society

In a guilt society, control is maintained by creating and continually reinforcing the feeling of guilt (and the expectation of punishment now or in the afterlife) for certain condemned behaviors. The guilt worldview focuses on law and punishment. A person in this type of culture may ask, “Is my behavior fair or unfair?” This type of culture also emphasizes individual conscience.

Shame Society

In a shame society (sometimes called an honor–shame culture), the means of control is the inculcation of shame and the complementary threat of ostracism. The shame–honor worldview seeks an “honor balance” and can lead to revenge dynamics. A person in this type of culture may ask, “Shall I look ashamed if I do X?” or “How will people look at me if I do Y?” Shame cultures are typically based on the concepts of pride and honor. Often actions are all that count and matter.

Fear Society

In a fear society, control is kept by the fear of retribution. The fear worldview focuses on physical dominance. A person in this culture may ask, “Will someone hurt me if I do this?”

I was interested in the topic because I have lived at the intersection of all three.

Until sixth grade, I went to an old-school Catholic school and church, where the nuns still wielded rulers as weapons, and God was always watching and never approving. I can still picture one of the sisters with terrible arthritis, and her hand contorted perfectly to wrap around one of the long wooden chalk sticks. I remember feeling that everything I did was a sin, deserving of punishment, and wrong, deserving of exclusion.

I also grew up in a household with a single, frustrated, angry mother and an older, equally angry sister. I spent a lot of time trying to be and keep everything perfect to avoid getting punished, always fearful of the hand and the wooden spoon.

I thought this was normal. As I got older, the voice inside my head would take over for the nuns, my mother, and my sister, reinforcing the messages of guilt, shame, and fear.

It wasn’t until after I was married and we had our son (and a lot of therapy) that I started to see and understand that my childhood was traumatic and how it affected me as an adult.

Guilt is what kept me feeling wrong.

Shame is what kept me feeling alone.

Fear is what kept me feeling small.

The behaviors that I developed to help me survive in a state of guilt-shame-fear became toxic in my adult relationships, closing me off to the people I desperately wanted to be close to and spreading out to every aspect of my existence: relationships, love, intimacy, sexuality, self-esteem, friendships, goals, expectations, happiness, comfort, safety.

What got you here won’t get you there…

I am on a journey of recovery and untethering myself from my old patterns and beliefs. However, as I go through this process, I want to ensure that my son has a different experience. While we’re not religious, and there (probably) aren’t nuns waiting around the corner, the most likely transmitter of the guild-shame-fear burden is me.

I still wrestle with my lingering expectations of perfection and fear that I will disappoint the people around me. I still feel the grip of guilt and shame for my actions and who I am.

While I am very conscious of the words I use when I engage in these topics with my son, it’s not only the words that influence how he interprets these messages. It’s how he sees my relationship with these feelings that will demonstrate what his relationship with the feelings should be. Even when I think I successfully internalize or hide these feelings, I know I am not that good of an actor. Their effects are visible on my face, body, voice, and how I present myself to the world.

In many ways, the work my wife and I have done has created a very different environment for our son than either of us had. I can see that in how he interacts with the world. He isn’t fearful like I was and is one of the bravest people I know. He feels guilt when he does something wrong, not thinking everything he does is bad like I did. And his relationship with shame is much healthier than mine, and he can also feel dignity and positive self-esteem.

It’s not perfect, and we’re continuing to equip ourselves with the knowledge and tools we need to continue to develop a healthy relationship with these feelings in ourselves and him. But I see such a difference in him compared to what it was like for me growing up, and seeing that difference gives me hope that I can continue to make changes for myself, too.