i hadn’t had Mikisa a week when she had her first grand mal seizure. her little body was burning up with a fever, so we assumed it was just the result of her sickness. i didn’t think much of it after that. through the hot summer months, her body continued to get stronger, and i breathed a sigh of relief thinking that epilepsy was one disability we would not have to deal with.
i was wrong. so, so wrong.
in october, just two weeks after our beautiful wedding in the woods, we heard a grunting sound coming from Mikisa’s room. it was 1am and we were late going to bed, as we had guests that evening at our house. i rushed into Mikisa’s room, to find her thrashing violently on her bed, eyes rolled back and foam coming out of her mouth. terrified, i told troy to call 911, which he did with shaking hands. i kept calling out, “mikisa, wake up. i need you to wake up right now.” as the seconds turned to minutes, and there was no sign of the seizure coming to an end, i started getting panicky, “oh God, it’s going on too long. please help us.” and then i really lost it, thinking she was dying, “no, no, no, no, this can’t be happening.” as the fire truck and ambulance pulled into our driveway, i started sobbing.
the seizure lasted 40 minutes and then, in the hospital ER, she was in post-ictal stage for another 20. that means that she was unconscious for over an hour. it was the scariest night of our lives. we really thought she could die.
since that horrible october night, i have struggled with my fear of epilepsy. the first few weeks after her seizure, i slept fitfully, waking every time she moved. we have a video monitor, which gives us peace of mind, but it’s taken some time to get used to.
with her misdiagnosis of lennox gastaut syndrome, i went into another tailspin of worry. it was just three days before christmas, and i felt so crushed and weighted down by the news. i just couldn’t stop thinking that life was going to become too much for me to handle, and that my whole world would revolve around Mikisa’s seizures, which apparently would get worse with each passing month.
in january, we got a different diagnosis after our 24-hour EEG in the hospital. Mikisa has ESES, which is still a very severe and rare seizure disorder. However, i was somewhat relieved to find out it was not what we initially feared. with ESES, it is more likely that the abnormal brain pattern will eventually normalize (usually when the child hits puberty). since learning of her diagnosis, i have journeyed through some very dark shadows. i have felt despair like never before. i have tasted the bitter cup of grief and felt the stab of heartache. i have been angry and confused and hurt. and i have gone through moments tainted with worry.
but now, i am slowly emerging from the fog. epilepsy is teaching me to trust more. i know that i can’t spend my life in fear of seizures. i know that Mikisa, while she is affected by this seizure activity every.single.night does not seem to mind. she is happy and continues on with her life despite the frequent assaults on her already damaged brain. she lives with her epilepsy. she is not fearful. she does not worry. it does not consume her. she might not like her epilepsy…it makes her hyperactive, confused, uncoordinated, forgetful, and it prevents her from getting a good night’s sleep. but it doesn’t change who she is. she is a beloved daughter. a beautiful soul. and epilepsy can’t take that from her.
when i made the decision to adopt Mikisa, i didn’t know about all her disabilities, although there were some obvious ones. epilepsy [her invisible disability] has turned into the one that has given us the most challenge. but it is also part of who she is. and when i chose Mikisa, i chose all of her. i don’t know if i can say that epilepsy is a gift…it is so complex and unpredictable. but, it also allows us perspective. makes us pray harder for the kingdom to come sooner. makes us more desperate for God. we don’t know what tomorrow will bring, so we live in today. with gratitude and joy and hope.
“God is looking for people through whom He can do the impossible.
What a pity when we plan only the things we can do by ourselves.” -A.W. Tozer