what epilepsy is teaching me

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

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10 responses to “what epilepsy is teaching me

  1. I am always both encouraged and challenged in my own daily walk as I watch you share your journeys with Mikisa. I hope one day when Im visiting Shannon, Linda or Marilyn that I will be able to meet you and Mikisa.
    Find strength for today sweet one.
    Karen

  2. We like to teach……..being taught is sometimes harder, eh? Thanks for the update, my friend…..xoxo

  3. God has given us all such a gift with our little Mikisa. Happy Mothers’s Day early my dear Christina.You are a great example of such a great Mom…We love you.

  4. Thanks so much for sharing, dear Christina. I love you guys so much! I continue to pray and rejoice in the miracle of you, Troy and Mikisa. You’re an amazing mother.

  5. Thanks for sharing, Christina. You are right, God wants us to be desperate for Him. That is the best place to be! He has ultimate control and nothing will happen unless He allows it. We have so much to enjoy and be thankful for each day and dwelling on those things can give us much blessing.

  6. This post reminds me of how God prepares us for every little thing. It brings me back to Glencraig when we spent precious time with all the very unique children. Glencraig and all your time with the children with special needs (including epilepsy) was just a small step in God’s plan to prepare you for your daughter. You are a shining example of what a mother should be and you inspire me. You are right where you are supposed to be. You are more than prepared to handle anything that comes your way.

  7. Love you, Christina. Such a wonderful thing to spend time with you three. You are often in my thoughts and prayers.

  8. Just beautiful Christina. You chose Mikisa however long before that God chose YOU to be Mikisa’s Mom. He prepared you for this job most all of your life…teaching you patience, and courage, and love…shaping your life to be ready for this precious miracle. God hand picked you for this job Christina, and how AWESOME is that!

  9. I strongly recommend you look into the ketogenic diet to treat Mikisa’s seizures. I work with children with special needs and have seen children treated effectively with this diet- ultimately seizure and medication free. Some MDs focus on medication treatment and may not fully consider this option. Medication can certainly be an option for some, but for others there are undesirable side effects and continued seizures. Just an FYI. Your daughter is beautiful (and FYI that you already know!).

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