Reposted Chapter 22: Safety During the Seizure Cycle

The drug roulette regimen made everything worse. Rose was not herself before a seizure nor after a seizure. She was lethargic, floppy, and dopey. She moved from her bed, to a chair, to another chair, and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in a big box store while shopping for a helmet, at a family reunion and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. For us every party was BYOC(bring your own chair), and of course the seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too…

“And then one morning it felt like the sun had suddenly risen.” – Kamilla Q

I hope one day you wake up – and just feel different.

I hope one day you feel the heavy burden’s gone.

I hope one day you feel happier and lighter.

I hope one day you can start to live again.

(THEN and NOW for Chapter 21: The Painful Appointment/Past Time for a Change)

Being proactive takes confidence. I had none at this point. I did not have a clue what to do.

But I did know what not to do, which is what we had been doing. We were poisoning Rose to try to stop her seizures. She was disappearing and they were still with us.

I remember the slaw and the spork. I remember Rose’s pale face and shaky hands. The day was painful, the appointment was excruciating.

I still had a tiny spark of fire deep inside my watered down and drowning mama-self. That spark flamed up as I watched Rose struggle to sit up and put food in her mouth. Something had to change. I had to do something.

It does not matter whether the fire lit was fear or love. What mattered was that it…