Crazy outfits of a crazy girl!
On Monday we met with Pickle's neurologist. After watching a few video clips of the seizure, the doctor termed her event as an occipital lobe seizure. This part of the brain is located in the back and acts as the processing center for visual stimuli. The next medical step is to have a 24 hour ambulatory EEG. The hope is that if there is unusual brain activity particularly during sleep it will be recorded. Based on the results of the EEG we will then make a decision if Pickle needs daily seizure prevention medicine.
As we are learning, epilepsy- having a seizure- has many classifications and an individual can have multiple types of seizures during one event. However, a seizure in and of itself is generally not harmful- despite how horrific they are to witness. What makes a seizure dangerous is the length.
Pickle has now had two epileptic events 6 months apart that fall under the category of status epilepticus. Status epilepticus is a medical emergency. Neither time did Pickle receive what was medically needed to help her seizures stop. Yet they did stop and without injury to her body. God protected her when we, her parents, could not.
Fear can so easily overwhelm. As we learn more, we realize how severe her most recent seizure events have been. It's easy to blame oneself. It's easy to become over protective or hypersensitive to nighttime noises- especially since she tends to seize early in the morning. Keeping the "what if's" at bay is a battle.
Sweet Potato was recently jutting out her bottom lip, shuffling her feet, and slumping her shoulders as she made her way through the dining room. I stood in her way, lifted her troubled chin so our eyes would meet, "Choose to be cheerful," I said.
Choose to be cheerful. It can be hard to square my shoulders, to lift my head, and to face the unknown with determined joy. This week as I've been reading, processing, notifying those who teach Pickle about her health change and still keeping the house afloat, plus school day routines, I have plunked down every afternoon feeling exhausted. I just want to space out, listen to a book without listening to it, mindlessly flip playing cards for another game of solitaire (or solitude as Sweet Potato refers to it!). And I have. I have slumped into the couch daily not defeated necessarily but certainly not cheerful.
A distant relative who is also seeking answers to seizures for her own children and I connected yesterday. We swapped stories and details about our kids seizures. We weren't competing for scariest moment (she'd win). No, we were trying to put puzzle pieces together. Looking for a rhyme, a reason for why we both unexpectedly have joined the club of families who carry a rescue drug with them at all times.
Rescue- the act of being saved from danger. My daughter needs rescued when having a seizure. She doesn't know it, but during a seizure her future depends on our ability to administer the care she needs. When her brain gets overwhelmed by misfiring electrical impulses, the result is the inability to function, to move, to think. She is helpless. The reality is so am I. Without Jesus rescuing me from my guilty heart, my mind would be constantly seized. I would be hopeless.
But I am an heir of salvation, the purchase of God. Born of His Spirit, washed in His blood. This is my story, and this will be my song. I will choose to be cheerful. I will praise my Savior all the day long. Because when I am lost in His love of me and for me, oh, what a foretaste of glory divine!
Our journey continues. We did not choose this road. However, He goes before. Dispelling fear. Making a way. Protecting. What a blessed assurance!
Resources we have found helpful-
Children with Seizures by Martin Kutscher
epilepsy.com - The Epilepsy Foundation website