Two Steps Forward, One Giant Leap Back

Some days I feel like we’re living that old adage, “Two steps forward, one step back,” except that we seem to move backward by leaps and bounds.

A few months ago Jenna developed narcolepsy and seizures. In trying to figure out the “why?” we tried eliminating and altering medications. Nothing changed. So, to give her body a chance to rebuild and to see if a different seizure medication would work, she hasn’t had IV antibiotic treatment for over a month.

One of the “to-do’s” during this off month was for Jenna to have a sleep study. She complains often of “not being able to turn off her brain” and “dreams that just go around and around” so that she never feels rested after sleeping.

Luckily, someone cancelled and we were able to get the study done this week. Jenna had had a really rough day, with lots of seizures and narc-outs that I was actually hoping would continue so we could get them recorded on her report. After getting all the electrodes hooked up (we had to take a picture – she called herself “FrankenJenna”) we settled in for the night. I thought she’d have a really rough time getting to sleep, hooked up to all those wires and knowing she was being recorded, but she drifted right off and actually slept pretty well. We left the hospital at 5:30 and by the time we got home she was miserable and the violent shaking just kept rolling through.

The last month has been hard on her…it seems like she’s back to fighting the Lyme, instead of dealing with the herxes that come as a result of the bacteria die-off. A thicker brain fog has rolled back in, her language and speech are affected more often and more unpredictably, and last night, for the first time in months, I could see some of the behavioral issues that we experienced before she ever started treatment. The worst though, is the pain. We had to take her off Neurontin and Lyrica, and she reacts to anything with Codeine, so her choices for pain medications are limited and to reduce the effect of any one medication on her kidneys and liver, we have to constantly rotate them.

I can’t begin to fathom the deep, intense pain that this hateful disease causes. I’m beginning to thing that her brain gives her the gift of narc-ing out, just so she gets a break from it.

A week ago our bubbly 17 year old senior was so incredibly determined to attend her final homecoming dance that she rested up for days before, took extra pain meds and put on a mask that only those of us who really know her could see through. Dressed in her ‘40’s garb with her charming boyfriend at her side, she told me the next morning that she had had the “perfect night.”

Unfortunately, the “perfect night” cost her a week of school and she still isn’t herself. The feelings of being lost and left behind are creeping in again. She says she doesn’t think people would even notice if she weren’t at school; they only notice her now because when she’s there I’m pushing her around in her wheelchair.

Getting ready for bed last night she told me that the night before “I told God that it would be okay if I didn’t wake up again because it just hurts too bad.” She’s also slipped back into not telling me good night – she says good-bye – and when I gently correct her, she says “No, I might not be here when you wake up.” How does a mom respond to that?


2 Responses so far »

  1. 1

    Janice said,

    With prayer…because I’m not sure there’s any other way.

  2. 2

    Sue said,

    Nothing but encouragement can come to us as we dwell upon the faithful dealing of our Heavenly Father in centuries gone by. Faith in God has not saved people from hardships and trials, but it has enabled them to bear tribulations courageously and to emerge victoriously.
    Author: Lee Roberson

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