To my Declan (Raquel Brown)

“To my Declan

I used to love laying next to you while you slept. I still love the contact but the fear is profound. Are you just adjusting or are you seizing? People tell me the anxiety will get better each day seizure free that goes by. How do I tell them each day it multiplies? Every day I watch you play but I remember the little boy in the hospital bed. I remember the beeping of your monitors or the sounds of nurses rushing in. I see you sleeping next to me. Peaceful and calm but my mind rushes back to the fearful 2 am drives to a hospital an hour away. I know you still have epilepsy even if it’s managed. I’m waiting. Waiting for the inevitable seizure that starts your clock back to zero. Waiting for your medication to stop working and more emergency room trips, ambulance/helicopter rides, and hospital stays. My fear is eating me alive. Fear that is spiraling and shattering that I am unable to sleep or eat.

But then I remember God was there. God held your hand in every operating room. God sat with you under anesthesia. God waited with me. God chose your treatment plan when I couldn’t.

I’ll never forget when they told us your seizures weren’t where they thought. It wasn’t starting in a safe place of your brain. It was dangerously close to the part that affected your motor skills. The choice that could leave you free of seizures forever could also damage you beyond repair. The safer option was months and months away from being available but could cause so much harm waiting for it. Then there He was; providing. On the same day as your dangerous surgery, there was an opening for the safe option. Once felt so out of reach that it was impossible became available at the same time on the same day all for you. Here we are, a week later and you’re seizure free.

I know God was there. I know God provided you this life. While you still have weakness in your arm and face that has not slowed you down once. God has and always will provide. I may still have crippling anxiety over when your next seizure will be but God was there then and He is here with us now. He is up at night with me watching over you. When I remember that God was there, I feel the peace only He can provide. I feel the serenity that everything is exactly the way it is meant to be. I know that when you seize next, everything will be okay. God didn’t make you have epilepsy but God definitely provides what we need to get through it.

It will take a long time to be able to move through the debilitating fear. I know it will take longer to trust that you might not seize anymore. I also know that I’m not alone and neither are you. We have our friends, family, and most importantly God. As long as we remember that, we will make it through this.

Thank you, God. “

Raquel A. Brown