Epilepsy.....The Struggle is real

in #family7 years ago

Me again!!
One of the greatest things in my life is being a father to two amazing boys. However, being a father has also been one of the greatest challenges I've faced.

Always smiling
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My youngest son Keagan (9) was born on my 1 year wedding anniversary July 16th. What a happy time it is to bring a life into this world. You have this amazing opportunity to take this fresh life and help shape and guide them to be the best that they can be.

Fast forward 3 months. This is one of the most difficult topics for me to discuss because it makes me replay moments that I will have burned in my memory until the day I die.

One day while I was at work, at this time I was a manager for a company called Walgreens, I received a frantic phone call from my wife that Keagan had a seizure. My wife told me that paramedics were taking him to a nearby hospital. Let me tell you, I have never driven so fast in my LIFE. Doctors got Keagan hooked up to some monitors and let us know that they were not suited for properly helping a newborn so we were to be transferred to a hospital 30 minutes away where he would get the attention he needed. While we waited for him to be transported he had another seizure. UGGH!!! Heartbreaking. It is such a horrible thing to witness this little child have a seizure. Completely helpless, there is nothing you can do but watch and pray.

Once we arrived at the University of Michigan hospital they ran some tests on Keagan. Thankfully he didn't have any more seizure that day. The next day we were able to talk to a neurologist who informed us that Keagan had an epileptic seizure and would need to be given medication that would be able to keep his seizures under control.

This was such a scary time in our life. There were so many questions I had that only time would answer.

Would he grow up with developmental issues?
Would he have learning disabilities?
Would he ever grow up and be able to drive?
Will he have these the rest of his life?
What does this all mean for him and will he be able to have a normal and happy life?

All the doctors we spoke with felt pretty optimistic that he would eventually grow out of the seizures. He went another 11 months without a seizure. After he had another seizure the doctors re-evaluated his medication levels and determined he out grew his dose and needed to be given a larger dose. This seemed to work but after increasing the dose he always seemed to be very irritable almost angry.

Fast forward to now
Keagan is now 9. He still has seizures, his last one was just over a year ago. In a way it is harder for me to go through his seizures now because he is to the age where he understands that he has them. He knows why he has to take medication twice a day. Why he can't swim alone or walk to school by himself. His last seizure was really tough because we were so close to being able to take him off his medication and he was SO excited about the idea he had outgrew his seizures. The day after he had his seizure he really wasn't aware that he had it. He only knew he was exhausted and didn't feel quite right. We told him he had a seizure and this news just broke his heart. He said "does this mean I'm not going to be normal?" :'( No amount of comfort or explaining is going to help him understand that he is normal and everyone is just a little different in their own way, but I tried my best to let him know that he is normal even if he does have a seizure once in a while.

Through all of this though, I still feel very blessed because his seizures are very well controlled. It most certainly could be worse. My heart goes out to the families that have multiple children with seizures and some kids that have multiple seizures a day EVERY Day. I am a very lucky father and couldn't be more proud of the great kid he is turning out to be.

Looking back to the beginning of it all there are still some questions that remain unanswered, such as "Will he ever be able to drive?", "Will he have these the rest of his life?" Only time will answer these difficult questions. Some questions have been answered. He does not have any learning disabilities or developmental issues. Keagan is currently in the 4th grade and scores in the 98th percentile in Reading and Math and has consistently been above grade level since 1st grade. Developmentally he is active in sports he just finished his 4th year of baseball and is about to start his 4th year of basketball. Very active and so smart. I am very blessed indeed.

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If anyone reading this has gone through similar situations or is currently struggling, please know I'm here for you, my heart goes out to you. Remember life is short and you need to make every moment a memory. One day at a time

Until next time, hold on loosely but don't let go because love isn't always on time ;)

Chris
"When life puts you in a tough situation don't say "Why me?" say "Try me!"

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