“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…

Reposted Chapter 21: The Painful Appointment

We had felt good about the first neurologist in the beginning. The doctor was observant and thoughtful. We had previously left each of our appointments with several written plans of action in case the first option did not bring the results we hoped for. If plan ‘A’ did not work, we also had plans ‘B’ and ‘C’ if needed. Now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office and wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead I was scolded for the numerous calls I had made to the nurses. The doctor mentioned wanting another EEG(electroencephalogram) and mentioned the possibility of VNS(vagus nerve stimulator) placement.
We…