The Good in the Bad and the Ugly of Epilepsy {Three Years In}, Part 1

"Bayley passed out at the Acteen sleepover at church this morning.   They think she may have had a seizure.  They've called an ambulance.  We're headed there now.  Please pray."

I typed those words three years ago this morning, having no idea at the time that we had just been thrust into another radically unexpected life change.

It took over three months, but we finally got a diagnosis: Juvenile Myoclonic Epilepsy. We learned that this type of epilepsy typically manifests during the early teen years, and that Bayley would have to be on seizure meds for the rest of her life.

We learned about the different types of seizures, particularly tonic-clonic (also known as grand mal), absence (also known as petit mal), and myoclonic (involuntary arm/leg jerk) seizures, as these are the types common to JME.

We learned that the major seizure trigger for most people with JME is sleep deprivation. Another major trigger is flashing lights. Over the last three years we've learned that in Bay's case, the most important things other than taking her meds regularly are giving her a long time to wake up in the morning and avoiding sleepovers. Adequate sleep is a must, and early mornings don't work well. And while emergency lights and Christmas lights haven't been the major triggers we expected them to be, flickering florescent bulbs and big screens at the movie theater present serious problems (as do camera flashes!)

I jokingly said the other day that one of the biggest lessons I've learned during our epilepsy journey has been how often lightbulbs flicker in public places, and how long it can take for them to be replaced! We've had to avoid the shower area at the gym and one whole side of our  most-used grocery store for weeks at a time due to bad florescent bulbs.

We've learned that sleep-deprived EEGs are really just a medically approved form of torture.

Btw...around here, EEGs are known as "Eggs". Peter coined that term back around Bay's first or second EEG to try to help her laugh about it, and the term stuck.

Speaking of EEGs, Peter would say one of the most important things we learned during Bay's very first EEG was that Bay does indeed have a brain. He seemed quite thankful to have his mind put at ease on that subject. Helpful brother, that one! ;-) Actually, he has been extremely helpful by keeping her laughing throughout the tougher parts of this journey.

I seriously don't know how we would have managed these years without all three of her siblings. Peter, Emlyn, and Ammah Grace have all been amazing in so many ways.

We've learned much more through this epilepsy journey, some of which I'll share in tomorrow's post. For now, if you'd like to read more, check out He Directs the Hearts of Kings (And Insurance Companies!) and Another Unexpected Path. I'll share more about this in tomorrow's post, but the most important thing we've learned (again!) through the unexpected path of epilepsy in our family has been God's overwhelming faithfulness and care for the smallest details of our lives.

And we know that all things work together for good to them that love God, to them who are the called according to His purpose. ~Romans 8:28

How have you seen the truth of Romans 8:28 worked out in your life? I'd love to hear about it in the comments!

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