What I was going to say

Someone asked me what I was going to say that I didn't say on Sunday at the Epilepsy Walk, so here's the text of what I planned to say:

Good morning!  I’m so excited to see all of you here today.  You’re probably here because epilepsy has affected your life or the life of someone you know.  I’m here this morning with some of my family and friends to walk in honor of my youngest daughter, Elizabeth. We call her Lizzie. 

On  Saturday, September 10, 2011, our family was at a neighborhood festival being held at our church.  Lizzie was three months old and was strapped into the baby carrier on my chest, asleep.  I was helping at one of the booths, doing face painting, when all of a sudden I felt Lizzie stiffen and jerk.  I looked down and her eyes were rolled back in her head and her little body jerking rhythmically.  It only lasted a few seconds, but it was terrifying.  One of my friends noticed the look on my face and asked what was wrong.  I said, “I think Lizzie just had a seizure.”  I quickly got up from the table and began to walk inside the building.  My friend went to try to find my husband, and then Lizzie had another seizure.  We left our three other daughters with friends at the church and quickly drove to the nearest hospital.  There, in the emergency room, they checked Lizzie out, drew some blood, and started an IV.  She had a CAT scan, and when that was finished, she was loaded into a Children’s Mercy ambulance and taken downtown. 

At Children’s Mercy, Lizzie was admitted.  She continued to have seizures.  This will sound strange, but I was glad when she had two seizures in the presence of the neurologists, because then they could see exactly what we were talking about. Over the course of the next three days, Lizzie had numerous blood draws, two spinal taps, two EEGs, and an MRI.  They wanted to rule out infection or anything else that might be causing the seizures.  I still remember the grave look of concern on the doctor’s face after the first EEG.  He said, “Her EEG was not good” and proceeded to tell us that Lizzie was showing a lot of seizure activity.  He said that the kind of seizure activity she was showing was consistent with severe cognitive and other developmental delays. He said that the brain waves shown on her EEG looked more like those of a premature infant instead of a three and a half month old.  He said it was likely her seizures would not be able to be completely controlled by medication.  The doctor even mentioned some specific epileptic syndromes, some of which may limit a patient’s life expectancy. He repeatedly told us we were facing a long road ahead.    Needless to say, when Lizzie was discharged from the hospital, I was full of worries and concerns.  However, we were blessed to have the support of many, many people in the form of prayers, cards, meals, child care, and financial assistance with medical bills and prescriptions.

Today, although the worry is still there in the back of my mind, it has lessened somewhat because Lizzie is doing very well.  We still don’t know why she has epilepsy.  All her genetic tests have come back normal, and her MRI was normal as well.  It frustrates me a little that they haven’t been able to pinpoint a cause, I guess because I think if they could nail down the cause then they would know what they’re dealing with and have a more specific plan of treatment.  However, Lizzie’s medications are keeping her seizures under control, and she has only shown a few minor delays in her development.  Her therapist from Infant/Toddler Services thinks she’s looking good, and her neurologist is also very pleased with her progress.  For the most part, Lizzie is a lot like other ten-month-old babies.  Although of course I don't know what her future looks like, right now I am just grateful for who she is and all she can do.

This Walk is a great way to bring awareness about epilepsy. The money raised helps the Foundation provide services for people living with epilepsy, provide awareness programs for proper seizure recognition and first aid, provide a voice to make sure health care options for people living with seizures remain strong, and provide much needed research funding toward better treatment options and ultimately a cure.  Thank you for being a part of such an important cause!