Monday, March 26, 2012

Seizure Monster

Today is Epilepsy Awareness Day.  With all of Anabelle's diagnoses, it is hard to keep track of everything she has, but yes, epilepsy is yet another thing we struggle with.  Almost every kid with lissencephaly does, and many with microcephaly, as well.  In fact, most of the medical care we give our kids has to do with two main health issues: keeping the Big P (pneumonia) at bay and controlling seizures.  We often miserably fail at both.  In the cephaly world, when we are having a bad seizure day, we say the seizure monster has come to visit.  We chase him off with pitchforks and rope in the form of emergency meds such as diastat and ativan.  I'm not sure if there are much worse things than watching helplessly as your child seizes.  Anabelle's most notable seizure is of the dacrystic form.  This is a crying seizure.  As those of you who know her know, my angel baby NEVER cries.  I think that's what makes it extra heartbreaking when she has one of these seizures.  Her face crumples up, then her eyes get real wide.  She looks terrified, then she lets out a horrible wail, like a newborn getting their first vaccinations, and breathes heavily.  I hope none of you ever have to witness it.

That is reality of life with lissencephaly.  Luckily, the awareness color of Epilepsy is the ever-lovely purple, which comprises half of Anabelle's closet.  All of Anabelle's friends had better make sure it have at least one shirt in every color in their closet, so they can continue to support all of the different ailments that plague her and her precious friends.  Here are some of her good buddies who shared the purple glow of love today...

Love to you all!  Thanks for spreading the good word!

1 comment:

  1. Kate, I just started reading your blog a few days ago. I have shed many tears, and absolutely love your writing style. Straight from the heart.

    I have recently started putting together my own blog, as my daughter Amalie also has LISS, and find your words to be inspirational and comforting.