And here we go again.
I sat and stared at the blank page wondering to myself “Where do I begin…. again?” Do I start at present time with the latest ambulance rides and hospital stays or do I go back in time to symptom onset?
Common sense tells me the best place to start is always the beginning.
It was my daughter’s summer vacation between first and second grade. She had an energy and vibrancy that was hard to keep up with and could light up any room. She had more friends than she knew how to fit into a summer calendar. None of whom she knows any longer. Strange symptoms make estranged friends.
We had some time off and decided to pack up the car and head to Ocean City, Maryland. All we wanted was family time, ocean waves, and memories. Well, we certainly got the memories.
One rainy afternoon, while driving away from the beach, a sudden and rapid movement caught my eye from the backseat. “Something is wrong Momma”, my son said. I looked back and saw my daughter, buckled safely into her car seat violently whipping her head. I reached to her and she grabbed my hand as we made eye contact. All I could see was the fear in her eyes. I found myself speechless and all this sweet baby could muster was “I can’t stop.”
We immediately pulled over and I grabbed my little angel out of her car seat and I held her tightly to me. She wrapped her little arms and legs around me like a scared baby koala and as we stood on side of the road in the rain, I could feel her warm little breath on my neck start to relax. I could feel her soften in my arms and could feel her heartbeat slow. She settled down while we stood there and I started to think maybe what I thought I saw wasn’t what I saw. Any mother knows what I am talking about; that chronic second guessing we do to ourselves. Until we know better.
Sitting here writing this, remembering that moment that changed our lives almost two decades ago has made me break out into that familiar cold sweat that I have experienced hundreds of times over the years since then. That sick feeling in the pit of my stomach and the wave of chills that reaches my soul. The tears that fill my eyes uncontrollably. It is a fear of the unknown. A fear of lack of control. It is a fear of sickness and disease in my child. It is navigating a storm without a compass. It is eventually learning this will be a lifelong battle of searching and advocating and asking for things that the medical community denies exists and I will stand beside my daughter and wield a sword until my dying breath.
She never deserved this. We never deserved this. Yet here we are. Still fighting the fight. Again and again.
Life with Borrelia 