The Oxford English Dictionary defines courage as:
The ability to do something that frightens one; bravery; strength in the face of pain or grief.
I define bravery as this girl:
About six months ago, Libby started having daily migraines. She's had migraines for years and years - she was diagnosed with them at the same time she was diagnosed with epilepsy - right before she started kindergarten. But suddenly, they were daily and she was miserable, plus missing a lot of school. We have always shied away from giving her prescription migraine meds because it's very tricky to manage other meds on top of the daily anticonvulsants that she takes.
But we had to do something. So we tried two different migraine prescriptions over the next couple of months. But they either made her very dizzy or increased the severity of her headaches. So much so that she couldn't go to school for more than half a day at a time or not at all. So we stopped taking both of those meds and were back to square one.
And then about three months ago, on top of the migraines, she started having severe side effects to her epilepsy meds. So then the goal changed all together. Her body was no longer coping with the med that has been a life-saver for the past 4 1/2 years and we had to find a new one. The new goal was to find an anticonvsulant that would help with the migraines as well as eliminating the side effects of the one she had been on for nearly five years.
But she couldn't just stop taking anticonvulsants and switch to a new med. Anticonvulsants have to be titrated over a six-week schedule so that she wouldn't have break-through seizures. So the first step was to start adding low doses of the new med to the current med. And it was a disaster. We never got past that first step because her side effects intensified tremendously and it became an emergency situation that required us to get her off of all meds as fast as it was safe to do so.
Which brought a lot more problems - more migraines, dizziness, and a lot of general weakness. And through it all, we held our breath waiting to see if she was going to start having seizures. And she didn't. For close to a month. She wasn't at school every day but she was keeping up with her school work and managing the headaches and weakness.
Until a month ago when I got a call from her school saying that the right side of her face was drooping. I raced to school and we ended up calling 911 as the numbness extended down her entire right side. After recovering and then having it happen again while still in the ER, she was admitted to the hospital for two days. The good news is that the MRI, EEG, and CT scan were all normal. The bad news is that we weren't any closer to figuring out what had caused the entire right side of her body to become numb and weak. At this point, we were guessing that she was having partial seizures or complex migraines and decided to increase her meds slowly. We were hoping to find a sweet spot - that perfect dosage of meds that would stop the seizures and migraines but not cause side effects.
And that's where we're still at today - looking for that sweet spot. It's been a month and she's experiencing loss of feeling and numbness on her right side 2 - 4 times a day, sometimes so much so that she can't walk well because she can't feel her right leg. Her right eyelid and the right side of her mouth droop at times. The current theory is that these are simple partial seizures. She's also had two grand mal seizures and I know it seems crazy, but we're used to those and can handle them. But these partial seizures every single day are rendering her incapable of getting through school and are stopping her from doing many things that she'd like to do and going many places that she'd like to go.
We don't have any answers yet but we at least have a plan. She's currently in the middle of a 24-hour EEG in hopes that we'll catch some of the seizures and determine whether they really are simple partial seizures or whether they are a type of migraine. And then this summer, we'll head down to Indianapolis to the children's hospital to meet with pediatric neurologists who will work with her regular neurologist to find a way to treat her.
I wrote all of this out today partially to update all the family members and friends who have emailed and sent messages and I haven't replied to. It's overwhelming to talk about. And I hate talking about it in front of her all the time. Plus, writing it all out helps me remember it all. So much has happened that my memory and the order of events becomes hazier each day.
But the real reason that I decided to write it all out is because I am awed by Libby's strength. If courage is really defined as "the ability to do something that frightens one; bravery; strength in the face of pain or grief," then Libby is the poster child of courage. She never tries to get out of going to school. She gets up every morning and gets ready to go. Some days she makes it and some days she doesn't. But she tries to go to school every single day knowing that she'll have seizures, knowing that she'll endure the funny looks and the questions from catty middle-school girls, and knowing that she may have to physically hold her face up in class through weakness and migraine pain. She just keeps going. I can't imagine the kind of strength she has that allows her to do that. She humbles me every single day. She is the definition of courage.
