I actually had a point in time, where the seizures took over. Where zane started having seizures closer and closer together. And so much so, we were admitted to the hospital where time stood still. Zane was having seizures every 5 min then down to every 2 minutes. We were trying test after test and drug after drug to try to get answers and calm his brain. As different specialist brought their opinions, diagnosis, and options to us… one in particular is something no parent wants to hear. The doctor says “we feel the only option, is to open the skull and remove the half of the brain affected by the seizures.” As I am sitting there feeling like I am at the end of a dark tunnel and the doctor feels a world away…. The words continued to echo. Remove half of the brain.
Remove half of the brain…. I felt then like I was floating in the air looking down at all of us sitting in the room. Zane wrapped in blankets in my lap, me looking down at him with tears in my eyes, my husband in the chair next to me, looking at the doctor. The doctor standing above us with hands folded in front of him waiting patiently for our response.
I love his brain. I love his brain. I love his brain. I don’t want to change him. I love exactly who he is. Don’t take my sons brain.
Over and over I said this until finally I was back in my body and said it out loud. My husband and the doctor both looked at me. My husband took my hand and said not to worry that he wouldn’t let them do anything of the sort.
In that moment, I realized. No matter how hard the road we travel is, I would never change the path we are on. Zane brings so much to my life and teaches me so much. He has given me strength i didn’t know i had and love that i didn’t know was possible.
From that moment on, I fully accepted my responsibility as an autism parent. A tiger mom, an advocate, a leader, a follower, a beacon, a resource, a sponge for knowledge. A shoulder to lean on, a listener. A mom who understands. A friend.
Now you know. Well, kind of. Now you know what lit the fire within me. The fire that burns bright and took me into this chapter of life with all my cards on the table.