Then and Now for Chapter 20: Drug Changes Change Rose

This period of time will always come back vividly due to the fear I felt every minute of every day. “Things fell apart. Months were a blur.” this chapter says. We were panicked by Rose’s decline. All we had were strong seizures and horrible side effects. I did not want to take my eyes off of her, but I was cracking up inside. Something had to give.

I have had to ask myself some hard questions about this stretch of Rose’s epilepsy. Why did we go along for so long? I am trying to be honest and careful here because I know some of you may be going through similar experiences.

When do you bail water or bail out? I think we bailed water too long here. Why? Ignorance and insecurity. We did not know what to do to help…

Reposted Chapter 20: Drug Changes Change Rose

Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new homebound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless…

I don’t want accolades
or a standing ovation
I don’t want to be applauded to the very echo for being the best Mom but, Sometimes I ask myself if I’m doing it right
I ask myself if I’m not clutching you too tightly lest I squeeze you
I also ask myself if my grip is too firm because I don’t want you slipping away from my hands

I ask myself if I have fed you well enough or you still want some more
I’m scared to move away to do other things in fear that you open one eye and find an empty spot beside you
I’m afraid to even blink because I don’t want to miss a moment

I want to see you smile in your slumber
I want to see your toothless gums as you yawn
I want to see your face change every day as it takes…