(THEN and NOW for Chapter 22:Safety During the Seizure Cycle)

There is no other way to describe our parenting style during those terrible months. It is hard to act relaxed when you are constantly on high alert, but we tried. We endured puzzled looks from strangers. Sometimes we got unsolicited advice. We learned to tolerate all this. It was part of the over-protective parent package. We were protecting Rose from injury, not public opinion.

I know this is a hard pill to swallow. Most folks mean well and are truly trying to help. Some advice is so ridiculous that taking it would be harmful. Our worst treatment suggestion came from a loaned book. It stated that we should hook up the patient to a car battery and shock him/her to kill the Ascaris lumbricoides (worm)larva that were clustering at the base of the brain and cutting off the oxygen supply.

Some facts on recovery from trauma include:

1. We should never downplay the horror of trauma. Trauma is trauma, and its impact is profound … And life after trauma is absolutely awful.

2. Recovering from trauma is slow and difficult. Nothing works for everyone, or every type of trauma. There is no ‘one size fits all’.

3. It is worth trying different types of therapy. If the therapy you try doesn’t really seems to help, then try something else.

4. It is important that we have our story heard. We need to have our suffering witnessed and affirmed. We can’t suppress and hide that kind of intense pain forever.

5. Cognitive approaches are helpful on some level. They can help us to identify unhelpful false beliefs – like “I am worthless”; “I deserve to be rejected.” However, changing core beliefs is often very difficult.  

Thus…

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…