Have you ever felt a deep fear that reaches down into your core?
Does that fear have a sound?
Mine does.
The sound is a deep guttural yell that starts like a night terror and culminates into a convulsion. When I hear it I’m filled with dread because I know there are more to come. It’s like a monster coming for me.
Dane’s seizures started 18 years ago. They have become a sick twisted friend. They center me and bring me to my knees. They put my priorities in perspective. They make me rest, pray, sit, hope and most of all be thankful in ALL things. All while living with this lingering fear.
The fear started when the doctors first said if we didn’t give him this drug and that drug he would go into Status epilepticus, which means he would go into one big long seizure and NEVER stop. They also said if we didn’t get the seizures under control he would end up retarded.
They said these horrible things when I was all of 25, not understanding most of what was being thrown at me.
Here I sit on the couch 18 years later still not being able to get the shrillness of his scream out of my head. They come with every seizure and once I hear it's all I can hear. All day long I think I hear it. The doctors never mentioned that.
Here is something else the doctors didn’t tell me.
We’re given a highly addictive drug to use “as needed” when Dane starts seizing. It’s to be given twice a day in a hefty dose. Because Dane clusters for days he gets quite a bit of this drug. Over the years it has been Ativan, Valium and most recently Klonopin. The doctors didn’t tell me once he stops having these clusters of seizures he has to be weaned off these drug because he could end up having “withdrawal” seizures. So as of Wednesday we were done with the first type of seizures but by Friday we were having withdrawal seizures. This leaves me feeling like an inadequate mother. I should know these things! I’m sleep deprived, sad and overwhelmed. I thought Dane had out grown this. I thought we were going to just deal with the autism from here on out. Now the battle is all about the seizures and the autism is like a side kick.
My takeaway from this part of my journey is that God is REAL. When I lie down next to Dane seizing, I can still find comfort and hope that God has not given me more that I can handle, and that He has a purpose for Dane’s life and He loves him. I find comfort. My fears subside and I rest.