Alexis' Story...

A little about my beautiful daughter and our experience with epilepsy.  Alexis, Lexi as I call her, was born on May 2, 1995.  This was almost 2 months after my 17th birthday.  Since I was only 17 at the time many people had already written us off as people "the system" would have to take care of.  Lexi was the most beautiful baby I had ever seen.  Everyone that saw her, even after she was born when most babies really aren't very cute, said she was gorgeous.  She had a head full of dark brown, soft curls that you just wanted to play with.  She also had the most beautiful eyes!  Those eyes have not changed at all.  She had a perfect olive complexion, but she had a red mark on her cheek that the doctors assured me would go away after a few days.  A few days passed and the mark was still there.  I took her to her pediatrician and she said she didn't think it was a birth mark but to not worry about it because she also felt it would go away after a little while.  Time passed and it was still there but we began to not even notice it, as it was just a part of Lexi and it didn't take away from her beauty. 
 
As time passed and she began to walk and do the things kids do I always knew she was special.  Of course, being her mom, I would obviously think that.  Lexi and I actually began to grow up together, since I was a teen mother. Taking care of Lexi was my number one priority and I loved, and still love, every minute of it.  I did get married when Lexi was a little over a year old to the man who although is not her biological father, soon became "daddy".  Lexi was as normal as could be and then on December 23rd, 1996 everything changed.  Lexi was laying in bed with us and she had her first seizure.  At the time neither of us had any idea of what was going on.  Neither her dad, or myself, had ever witnessed a seizure.  After about a minute it stopped.  I thought she had maybe choked on something and she was ok afterwards.  The next morning, which was Christmas Eve, she was standing next to the bathtub talking to me in her cute 19 month old way.  All of a sudden, she fell back on the floor and began to have another seizure.  Her dad called 911 and she was rushed to the hospital.  I rode with her and when I began to explain what happened the EMT asked if she was epileptic.  I said no and they said it sounded as if she had a seizure.  She was admitted into the hospital and test, after test was ran.  She also became sick while she was in the hospital and they had to control her fever.  She continued to have, what we were at that point told were seizures, while in the hospital.  As a parent, I have never felt so much fear.  The doctors said they needed to test for multiple things, to determine why she was having seizures.  Finally, we were told that the "birth mark" on her face mirrored what could be a pattern on her brain.  Finally, after about a week of testing it was determined that she has epilepsy.  She also had a virus that caused her temp to rise and bring out the seizures.  Lexi had spent her second Christmas in the hospital but we finally had a diagnosis and had to now understand how to live with that.  She had a wonderful physician at Children's Hospital.  She began taking tegratol and had seizures from time to time for a couple of years.  We had to watch her extra closely when she was sick because when she had a high temperature it would cause seizures sometimes.  For a while my life revolved around making sure she had her medicine and that we had the emergency valium with us at all times, just in case she had a seizure that lasted more than three minutes.  At one point after an emergency room visit she was given a medication that caused her tegratol levels to double.  So, we had another stay in the hospital to test her liver, etc.  Epilepsy has made us think of life differently in that we have to be cautious of things that others do not.  A simple fever could cause her seizures to come back and life change for us all over again.  I pray that she remains seizure free.
 
In dealing with all of this, I made a point to make everyone in our lives realize that epilepsy would not keep Lexi from doing anything that every other child did.  This was not always easy as many family members wanted to baby her and do everything for her.  Lexi has now been seizure free for ten years.  However, we are fully aware that at any time they could start again.  Due to this I still watch her very closely.  She has never let this fear hold her back.  We have treated her epilepsy as just another part of what makes Lexi so special.  We have, as a family had many life changes since she was diagnosed.  Lexi now has a little sister, Alyson, who she loves to fight with yet they adore each other.  We have dealt with going through the divorce of their father and myself as well.  Through it all I have been blessed with the love of wonderful daughters and it has made us all stronger and better people.  Lexi is at the very least, an over achiever.  She is my track star.  She was the high points athlete at last years district track meet.  She is beautiful on the outside but more importantly on the inside.  Her dream is to be a model/actor/singer.  She is a great sister, daughter and strives to be a role model for other girls.  Last but by far not least, she is a Christian and extremely proud of it.  She has not let epilepsy or any other obstacle get in her way of being the best she can be.  I am so proud to say she is my daughter.  I am so thankful to the PEACE organization for making her dream of going to New York come true.  Being a single mom of two wonderful daughters, it would not have happened without you!