My Epilepsy Story

Processing….

As I finally sit here to write for the first time since attending Baby Cece’s visitation, words cannot even begin to describe the pain I saw in her parents eyes……My heart aches for Lacey and Jim as they begin to somehow try to move forward with their lives.  While on my way over to the funeral home my husband and I were talking about how hard the next few months will be on our family as we begin this new journey in our lives.  Starting the nonprofit and beginning a new job for my husband will all be challenging. Yet when I walked out of that visitation I sat in the car with my family and said this is why we must keep going.

Our three year old, Hannah Kate kept asking questions about Cece and why she died…Samuel (8) kept telling her that she had a seizure in her brain and it is like a lighting storm.  As we listened to the two of them talk about epilepsy I heard Hannah Kate say “Mommy is going to have a seizure and die too”.  My heart sunk to think this could happen and my children would be standing there with others, as I stood there with Cece’s parents…. I tried to explain to them this is why mommy went to Washington, DC to talk about epilepsy.  Hannah Kate piped up and said we need to be a doctor to find out why babies have seizures.

I am so eager to see where our journey will lead our family…..When people talk about how epilepsy has affected our family we realize that our family needs to work to further the cause of epilepsy…….

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Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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