adjustment , one drug added , another weaned . She seized and seized , uncontrolled .
Four months of seizures lurched by . A week before her fifth birthday , Tarica had a new kind of seizure . It knocked her over , lasted twice as long , and temporarily paralyzed her left side . That morning at an appointment in Pittsburgh , we discussed brain surgery . We had a decision to make .
The new seizures became normal . She collapsed every time she seized . No more stairs or standing on chairs , unless she had someone beside her .
The violent seizures should have upset me , but I saw in them a sign . Something had to be done to give Tarica her life back . We had been asking God what to do . Brain surgery looked like her best option .
Tarica was admitted for Phase One of surgery . This involved extensive testing to see if tests could locate the seizure focus ( source ) within her brain . If the tests found the focus , then she qualified for Phase Two , brain surgery . Phase One usually took ten days to record all the necessary seizures . Tarica ’ s tests took six days , the shortest Phase One in the hospital ’ s records . The tests found the seizure focus .
After Phase One , Tarica stopped seizing , but we scheduled Phase Two . With Tarica ’ s history , the doctors didn ’ t believe she ’ d remain seizure-free . Besides , a young , resilient brain responds better to surgery .
I could see where our story was going . God was showering His grace on us and revealing His power . Surgery would heal Tarica , and we ’ d have a miraculous story to tell . No more drugs . The real Tarica would return .
Oh , I rejoiced to see God at work . Some of the work had happened in my own heart . Our epilepsy detour taught me that I don ’ t get to map my journey — or my daughter ’ s . Epilepsy was a detour only because I had other plans , ones not involving drugs , hospitals , and seizures . I wanted the gentle road winding through the shady foothills , not this pock-marked path plunging through thorns and staggering beside black canyons that threatened to swallow me .
I learned I don ’ t appreciate God ’ s grace until it ’ s all I have left — and then I reach out , desperate , and grace seizes me . By grace , I am borne through the darkest nights and hardest questions . Like manna , grace cannot be hoarded . There ’ s always enough to sustain me , but never so much that I forget to depend on God . Grace made me feel as helpless as epilepsy did , because I couldn ’ t control it . Epilepsy seized Tarica ; grace seized me .
I learned I made epilepsy harder by believing that God didn ’ t intend this path for us . Not for a lifetime , certainly . He gave us a detour long enough to teach us a few lessons , and then He ’ d guide us back to the gentle road .
I learned that when I try to plan a detour ’ s route , I end up lost . And lost is where I found myself in the next part of our story .
Tarica was weaned off her medication and admitted for Phase Two . The surgeon implanted a temporary grid in her brain over the seizure focus . She had to seize at least twice while the grid was in so the doctors could zero in on the precise location of the focus . After that , if all went well , the surgeon would remove the seizure focus . We waited ten days . No seizures . All kinds of abnormal brain activity , typical of epilepsy , yes , plenty of that , but not one seizure . The doctors were baffled . Is this the same girl who had a six-day Phase One ?
On day ten , Tarica was wheeled to the OR for the grid removal surgery . I stood beside her as she slid onto the operating table and accepted the anesthesia mask . When the drugs overpowered her , I released her hand and stepped back . A nurse led me out of the OR , and as the doors swung shut behind us , I bent at the waist as if I had been kicked in the stomach and wept into my hands .
The nurse laid her hand on my shoulder . “ She ’ ll be okay . She ’ s in good hands .”
“ No , no , it ’ s not that ,” I choked . “ It ’ s that we went through all this for nothing .”
In the last ten days , I had learned brutal lessons about faith and trust and grace , but at what cost ? Tarica wasn ’ t healed .
We took her home , brain intact , back on medication . We feared she ’ d seize soon after surgery , but she ’ s been seizure-free for eight months . Does this mean she ’ s healed , not by surgeon ’ s blade , but by God ’ s power ? I don ’ t know . Her latest EEG revealed the same abnormal brain activity that ’ s been present since her first EEG . The doctors say she could seize at any moment . They don ’ t offer much hope , outside of a miracle , that she ’ ll live her life without seizures . But right now she ’ s not seizing . What does this mean ?
I don ’ t know . I ’ m done trying to map our route . Because epilepsy taught me a lesson I ’ ll never forget : It doesn ’ t matter what road conditions lie ahead because the same God who led me through the thorns , who fished me out of a few canyons , who seized me with His grace — that same God , He will be there .
He will be there beside us on the road that isn ’ t a detour after all . |
ABOUT THE AUTHOR
Wife . Mother . Daughter of God . Writer . Stephanie pursues these callings from her 1930s home in Pennsylvania ’ s Allegheny Mountains . She wrote Light My Candle , Prayers in the Darkness of Miscarriage and is working on an epilepsy memoir . Contact Stephanie at stephaniejleinbach @ gmail . com or visit www . stephaniejleinbach . com to subscribe to her email list , where she tells honest stories about relationships , birds , raw emotions , and the grace she finds in the grit of her imperfect life .
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