Sunday, October 25, 2009

November is Epilepsy Awareness Month

I can remember the day, like it was yesterday. Although it was nearly 17 years ago. It was the day I was told that what I was witnessing, was my 6 month old baby having seizures. And that he has been having them since he was 4 months old.

Are you kidding me??? When did I get run over by this MAC truck? When did the room start spinning? How did this happen?

You know when I was growing up, our family, and I mean my extended family, really did enjoy good health. And relative good fortune. I think if you were to ask all of my cousins..... we would all say we had a grand time with each other growing up. We were all overall healthy kids. Playing sports, hanging out with friends, and basically living care free lives.

When we thought about having a family, I never in my wildest dreams thought one of my children, let alone 4 of them, would struggle with any health problems.

The Lord had a way of preparing me, although at the time I did not realize it. I remember seeing a segment on one of the news magazine shows, about having a neo natal unit in the hospital where you deliver raises your child chance at survival if there were to be an emergency. We did choose a hospital with a neo natal unit. We did not need, but we wanted to be sure our child would have all that he or she would need.

Enter our oldest child.... he was a healthy baby boy, no complications or signs of distress. The first four months were wonderful. He was meeting all his developmental milestones. And then we started noticing something strange.

The doctor assumed we were the 'typical' first time parents, over cautious. He was wrong! What we were seeing were seizures. It took 2 months to get a diagnosis. It was not until he was having a status epilepticus event (prolonged seizure) that we received a diagnosis.

Our lives, and his, would never be the same. Our dear boy has struggled with seizures his whole life. In his 17  years, he has probably had a total of 3 seizure free years. 2 while on the ketogenic diet, and one last year. In spite of the many years he has been plagued with seizures, he is one happy boy, who loves the Lord.

I know that the Lord has had His hand on our boy, on our family all of these 17 years. Helping us, by placing things in our path that we needed. I am so thankful.

I am thankful for the lessons that I have learned from my son. I have learned the true meaning of unconditional love. I have learned to live in the moment. To be present in whatever it is we are doing... whether it is good or bad... Living that way allows you to experience the purest joy... the joy of a child... the joy that my boy experiences.

 And above all we have learned to lean solely on the Lord. Leaning on the Lord through our rough years have made the burden light. For that I am thankful. I am thankful for the love my son has for the Lord. I love to listen to him tell me about his Sunday School Lessons. Or how his heart was stirred in preaching. Or to watch him be so moved, that he goes forward at the end of a service, to have time with the Lord in prayer.

If the Lord did not bless us with a son with these specific needs, I am not sure what kind of parent I would be. I fear that I would be one of those keeping up with the Joneses types.  Trials of any kind, especially long term health trials have a way of putting that into perspective.

On a side note-4 of our 5 children have had to deal with epilepsy. Currently only our oldest is still battling seizures. We are thankful that 3 of our children have been able to receive treatment (the ketogenic diet) and have been able to resume life...with seizures being nothing more than a bump in the road for them.  Our oldest is still in the throws of epilepsy. I am thankful to have the arms of our Lord to lean on.

November is Epilepsy Awareness Month. Take some time and learn about Epilepsy.

Here are some facts most people don't know about Epilepsy;

Epilepsy Facts

  • Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

  • In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

  • Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

  • In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

  • The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

  • It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

  • The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.


If you would like to help further research for a cure for epilepsy, please visit Citizen's United for Research in Epilepsy for information on how to help!


Thank you for taking the time to learn more about epilepsy!


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