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and we all fall down

Wednesday, December 27, 2017

We got lost some time in early November. I think the seeds were planted when she got a head cold in September. A virus that usually sends her spiraling downward, I fought back with all I had learned, and we won, and the beat went on, Health. Happiness. Freedom. Fighting back a PANS flare was like wielding a new found superpower! Powerful and power-filled. I would not let it erase 3 months of beautiful, profound, deepening, health.

Early November, her sister and I caught a mild stomach bug and although she didn't catch it, we started to see PANS symptoms. Once again, I threw everything I had at it to stop the flare from progressing. This time it wasn't as easy or as quick but I felt we were making progress. Sadly, a week and a half later she caught another head cold and all the health we had gained spiraled away from us.

PANS. How easy it was for me to intentionally forget. Blocked from my consciousness I erased the volatility we had been living with for years. We had found "it", figured it out, and she was better now. Three months of health that I could not have imagined, allowed me to erase the volatility of PANS and take comfort at last. My daughter was okay.

The brutality of PANS is monstrous. Months of healthy carefree happiness, stolen in the dark of night. This flare tip-toed around us for a while, creeping closer, slipping further away, and rushing back in to startle us aware. Like a slow motion horror film, dragging my daughter away from me, down in to a deep black hold that has no bottom. Clinging to her with one hand, while my other throws various supplements, medications, and treatments at it. Sighing with relief as she surfaces, if only for an afternoon, it means I have not lost this battle. I still have her in my grasp. I will not let go. It will not get her again.

It has been almost two months now and we are bumping along with good days and bad days. Good nights and not so good nights BUT no horrible nights so we are grateful. Grateful. (humpf)  We've tried a couple of new therapies to modulate the immune system; one created more extreme emotional lability so we've put it on hold, and one seems to be helping so we're stepping it up. Only time will tell.

What next? Where does this leave us? When she returns to full health again, which I confidently hope to see within the next two weeks (hope springs eternal), where will we be? Those three months were a gift of precious magnitude that we will likely never have again. The health may come, but the confidence and peace will likely never settle in my heart again. Perhaps when she is grown? Will I let my guard down then?

PANS has taught us fear but life teaches us resilience. Faith may be creeping back in to my heart. Long lost faith. Quieting the noise and the learning and the research, I am learning to trust my instinct even more when it comes to what she needs next. And I press on.

We all fall down...rest, recuperate, recover.  Such is life.

Strength. Hope. Love.