Hanging on

I want to hang on to hope. I really do. We had a pretty good week---four evenings with no seizures whatever, one with three and another with seven. Then...Monday night. Twenty-plus seizures requiring a significant amount of Ativan to slow things down. It did.

Barry, Meaghan and I were running around to get the medication, the water, note the time of the seizures and wait for the moment of clarity in-between to give Michael the Ativan. Meaghan was muttering "PTSD" under her breath. She's right. The falls, the emergency calls, the ICUs, the intubation, the realization that no matter what we have done, we have been unable to stop so many seizure episodes during  this most heinous year. Yes, we are traumatized. I can hear it  in my voice, see it in their eyes. We are scared, we are scarred. We simply haven't had the time to regroup after one disaster before another occurs.

Most recently, we've had an eight week break from ambulances, ERs and hospitalizations. That's good and I'm grateful. But the dynamics around the kitchen table each evening illustrate the fragility of our psyches. Every dropped utensil, quick movement, bent head or even a throaty, hearty laugh results in high alert mode. When we realize it's not a seizure, conversation resumes but the fight or flight feeling lingers. It lingers and hangs over us, a storm cloud taunting above our heads.

We're a pretty tough group. We really are. We've learned a lot from Michael. He has persevered in so many situations, with so many obstacles. He remains hopeful, even adamant, that he will overcome this setback year as well.  And so....we too are hopeful. Always, all days-there is hope.