Childhood epilepsy

Dad, I love you so much…I think I’m dying.

The room is broken…my eyes aren’t working.

I’m scared dad, I am scared.

Grayson to me

I just held my son, Grayson, like a baby, a big long 8 year old baby with his legs wrapped around me, as he cried fearful tears into my shoulder. I stood with him in my arms swaying and talking softly into his ear, “I’m here, it will be okay. I’ll take care of you.”

Parenting.

I am lying on my son’s floor reading, scrolling, and learning what I can about current childhood epilepsy. He’s been asleep off and on for the past 4 hours. My back is sore, I’m kind of dirty from washing the car, and I’m hungry…yet I refuse to leave his side for more than a few minutes. Why? This was me as a kid, many many years ago. I remember being scared, exhausted, and confused. The person I remember always being by my side was my grandfather. He was my calm and caring rock when I would slip into an episode, lose control of my mind and body. My mom was there as well, but I remember him distinctly by my side reading and comforting me as I slept. I am now this calming and caring rock for my son as he sleeps.

I hesitated to write anything about this because I fear people seeing the imperfect sides of me, my relationship with Laura, or my kids. This is part of empathy, seeing all sides, right? Opportunity, whether taken or not, feels like it is given to those that appeared perfectly worthy to take them on. By perfectly worthy, growing up as a light skinned Black boy, I always felt othered and imperfect. Not because of my upbringing, I grew up in a loving and caring home, but because of how society frames worthiness. This means I could not show weakness or radical difference beyond my skin color if I wanted opportunity. I must be ready and almost perfect at all times. I still feel this way today and I know, it is not a good way to live. It’s fucking exhausting. I’m changing this by being more me, sharing more of me, and realizing that I will lose people as I unfold.

My son is deep into his sleep, recovery, and renewal. He’s resetting like I remember doing. The reset is difficult and takes time, which in our hyper productive and FOMO driven world, slowing down feels abnormal. As a kid I remember thinking that maybe I was running too fast or playing too much. Exhaustion then was defined by sweat and physical exertion. I remember thinking that I could control it by slowing down early and even playing a little less. I didn’t slow down, heck, I couldn’t…my speed was and still is fast. I know this will be G’s too…go go go, crash.

Eventually I had more control of my epilepsy through prescription drugs and watching my diet and sleep patterns. Episodes got worse, grand mal seizures, as I aged and felt a bit random at times. I remember trying to shower off the shakes and eventually crumpling into a ball on the bathtub floor because I couldn’t hold the wash cloth. I would be on the floor letting the water wash over me while I listened to the sounds of the water hitting my head, the glass, the bath floor…anything for a bit of calm focus. I’d sit there and loosely hug my legs as best I could. I’d call for my mom after drying off a bit and let her know, I’ve got to sleep right now. She knew what was going on and would calmly dress me and tuck me into bed for the rest and renewal I needed. We both didn’t want it to get worse because we’ve seen worse.

Sometimes I would wake up in a new day. Sometime I’d miss multiple meals and wake up extremely hungry. It was okay. Sleep was my fuel. Sleep in his fuel.

This is the start of a new chapter in my life with Grayson. I’ve been down a similar road before and will be here to care for him as he journeys down his path. I don’t wish this upon him and would take this burden upon my back instantly, but I know he’s strong, curious, and will find ways to make this reality his own. The one pattern I must break within myself and not put on him is this need to be perfect, to control, or to be ashamed of our reality. It’s best to gain opportunity, friends, and experiences by being our whole true selves.

Be your true self Gribble, but for now sleep. I’m here, I love ALL of you, and I won’t leave your side.