This weekend marks an anniversary for our family. One year ago, my son Dylan’s PANDAS symptoms were at their most acute. It was a horrifying weekend in terms of his illness. Although Dylan had received an anxiety and OCD diagnosis from a neuropsychiatrist and had been in Cognitive Behavioral Therapy for almost two months, his symptoms were getting worse. May 5-7th2017 will forever be etched in my mind. My then 10-year-old son was overtaken by forces I didn’t understand. His emotional state was in complete breakdown, and it took its toll on my physical state. I knew the lump I felt growing in my right breast wasn’t good, and I had a mammogram scheduled for the end of May, but with Dylan in crisis mode I couldn’t yet face what lie ahead for me. My focus was on my child.
As painful as it is to remember back to that weekend, it’s an anniversary I will celebrate. That May weekend also brought clarity and started us down our path of healing. I KNEW that there was something we were missing regarding Dylan’s health diagnosis, and I kept saying so to my husband, I just didn’t know what it was. On the morning of May 7th,I read a blog entry on Facebook that a friend had tagged me in several weeks before. It filled in the blanks for me. I read through the symptoms and risk factors for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections) and I knew that was the demon that had overtaken Dylan. I sat down with our family doctor five days later, we started him on antibiotics immediately, and two weeks later I had the mammogram that began my cancer-healing odyssey. Oh, what a year.
Here we stand, one year later. This year has taught me that so much of life is about perspective. Dylan’s still on antibiotics. I’m still in treatment. I’ve got 21 radiation sessions to go, 11 more antibody infusions, 1 eyelash left. But we are here. Compared to a year ago, we are doing incredibly well. We know the demons we’re facing. We have so many healing tools at our disposal. We are on the path.
While clearing out some of the junk that has accumulated over the last 6 months, I came across some writing I did this past winter, when our world was dark.
No space for long words or extended notations.
Energy goes towards staying warm; staying sane; staying on top of some things and not others; waiting for time to pass.
These eyes seek signs of healing; they recognize early symptoms. They glaze over at the breadth of experience of the PANDAS parent, and the lack of understanding that governs this landscape.
We circle our wagons, identifying triggers, requesting more lab work, enduring horrifying blood draws. We see behaviors that both terrify and fascinate us. We become experts at studying our children.
How will we release them?
The healing path is their own to follow. We can help clear the way with our research and our blood tests—we can try to understand the biology behind the backslides.
But in the end we cannot protect them from the bacteria. We depend on this symbiotic relationship.
It is only through activating the divine intelligence of the body that we can tip the scales in our favor. We must give our children’s bodies the tools to fight their own battles.
We must release them, but…how do we let go?
You have an amazing way of turning your struggles into a beautiful journey. You are such an inspiration to me, and I am so blessed to have you in my life. So, so glad you are all on the road to recovery. Sending lots of love my dear friend.
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Thank you for these kind words and for all your support this past year! Love you!
Again…just wow, wow, wow! Much love….
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