The first month of our epilepsy journey.

I'm pretty sure I read too much.  As soon as I found out Lily had epilepsy, I researched every possible treatment available (for her particular type of epilepsy).  Surprisingly, the diagnosis did not hit me until I dove into the literature and studied the possibilities for those suffering from epilepsy - its potential effects on family dynamics, the self-confidence issues many suffer from, the horrific side effects some patients experience.  I could go on and on.  The more I read, the more downtrodden I felt.

Fortunately, I balance my research with my faith and my study of the scriptures and am truly blessed to have the perspective they bring.  The gospel is such a grounding influence, one that brings immense hope amid life's challenges.  Epilepsy is a big deal.  And it isn't.  It's just one of the many things that people experience that can be translated for good.  Having grown up in a family with a disabled brother, I can testify to the blessings that come with special needs children. 

Lily had a rough week after starting her medication.  Her seizures ceased within 48 hours.  However, she was absolutely miserable, burying her head in a pillow and wearing a heating pad on her upset stomach for days to alleviate her round-the-clock discomfort.  I sent her to school several of these days, encouraging her to "push through" as much as she could, only to get a call (within hours) from the nurses office requesting that I come pick her up.  I prayed fervently, asking for her pain to subside so that she could get on with life, knowing that, for many patients, the adjustment to medication takes months.  Some have to try several different kinds before finding the most effective one with the least side effects.  In Lily's own words, she'd "rather have the seizures".  It was bad - I didn't know if I could watch my 8-year-old go through that kind of pain indefinitely and I spent hours finding ways to alleviate her suffering.  After five days of misery, I called the neurologist, who lowered the dose (she was already on the "minimum" dose for her weight) temporarily.

She requested that we up the dose after a week or two, but I can't bring myself to do it.  She is seizure-free (by all appearances) and still complains of a headache and tummy ache every single day.  (Although the complaints appear to be the worst when she's asked to practice piano or clean her room - she's still Lily, all right. )  She's much more functional now, though, so I'm in no hurry to increase the dosage.

It's tough to watch your child go through something difficult.  Tim and I are both grateful for the opportunity to exercise compassion, though, and have noticed an increase in patience and love for this child of ours who used to evoke our tempers so easily.  She is learning and growing(the hard way - which I'm beginning to realize is really the only way), and so are we.  One month down.