Living with Epilepsy

Nine years ago, I awoke on a Tuesday and prepared to go to work.  I had just started a new job as the Children's minister at our home church.  As part of my responsibilities, I was the Mother's Day Out director as well, and I was preparing for the day ahead.  Reagan and I had made the decision for Caleb to stay home with him that day since Reagan was off as well as letting him get some additional rest since he had been overly tired the night before.  About seven a.m. I heard a thud coming from Caleb's room and I waited to see if he came out of his room.  However, he didn't and I left to go to work.  About 30 minutes later, I received a call that changed my life forever.  It was Reagan and he was in a panic as he had found Caleb in the middle of a seizure.  We agreed that he had to call '911' and I quickly prepared to go home.  On the drive back home, I calmly called family to let them know what was happening.  I honestly thought that we would go to the hospital, have some tests done, and be back home before that evening. 

When I arrived at our house, my heart sunk as I saw two ambulances outside our house as well as other emergency vehicles.  Reagan met me at the door to let me know that Caleb had quit breathing as a result of the medication they had to give him to stop the seizure.  I fell apart.... two people were working on Caleb getting him stable and ready to be flown to Cook Children's Hospital in Fort Worth.  We began calling family back to let them know things were more serious than first anticipated and that we needed them to come.  They left with Caleb and we made the longest drive of our lives.  We arrived and began a several day stay in ICU as test after test was run on Caleb to find out what happened to our son.  Several weeks later, it was determined that Caleb had epilepsy.

Caleb's seizures are hard to define.  Originally, he was diagnosed as having complex partial seizures, but over time his have progressed to more generalized tonic-clonic (grand mal) seizures.  The other frightening aspect of his condition is that he rarely comes out of the seizures without medical assistance.   I have a medication that goes everywhere with us to help him stop if the need arises. His recovery (after an episode) can take hours as he battles a migraine-type headache, nausea, and a desperate need for sleep.  Thankfully, Caleb has seizures only rarely and that makes his condition manageable.  However, there is nothing that prepares my heart to see my son in that state- I even shared that in a previous post.

Epilepsy is frightening and it does affect our day to day life as medication and sleep are key factors for our son's health.  It has affected his emotional, physical and mental health because he is so small for his age.  We have had many discussions regarding his size, his self-esteem, and living on constant medication.  At one time, Caleb was having to take close to 50 pills a week, but thankfully that has changed.  We still have hope that he will outgrow it and be able to live a life free of medication, but only God knows what is ahead for Caleb.  The main thing I have come to accept is that this part of Caleb's life is not an accident- it is part of God's plan for him, and for us- as a family.  I have also learned that sharing our story helps others who deal with this illness as well.

I ask you to please join me in praying for those you know that deal with this illness as well as participating in benefits to help fund Epilepsy research.  Also, being understanding and supportive of families -like ours- that deal with this illness is more helpful than you could ever imagine.  Several friends have offered meals, prayers, and hugs of support on particularly hard days- especially on days that he has had a seizure. More than anything, my hope is to inform and help others to have a greater understanding about this disease.  Please "share" this with others!  We appreciate your love, prayers and support!