Being a Parent to a Child With Epilepsy

Life's journey is filled with unexpected twists and turns, challenges that push us to grow, and moments of pure joy. When you're raising a child with epilepsy, the path you tread becomes even more complex, but it's also enriched with invaluable lessons and a deeper appreciation for all that life has to offer. In this blog post, we'll delve into what it's like to raise a child with epilepsy and the unique experiences that come with it.

Thoughts About Parenthood

I have always wanted kids but also wondered if it was a good idea. I struggle with managing time and staying organized, I’m pursuing a new career path in radiology and had countless thoughts of “what if.” What if I can’t handle it? What if my child has “this” what if my child has “that?” What if I mess up and something happens to him? What if I can’t do school and raise a child at the same time? I am happy that I have him and wouldn’t change that for the world. All I can do is my best. I don’t mean to brag but I’m pretty much the greatest dad in the world. Ask my son. He will agree.

The Diagnosis

While I was in radiology, I got a phone call. It was during clinical rotations. That week I was in CT. I did not have my phone on me at the time so I couldn’t answer. I few minutes later I saw a text message on my watch. My wife had told me that Xavier is having a seizure. It wasn’t just the seizure that was scary. What was scary was how long it lasted. His first seizure lasted about 80 minutes and he wasn’t breathing. I got up immediately, let everyone know that I had to leave, and rushed to the hospital. It is never easy seeing your child being intubated in the ICU. Months later he had another one, and then he had a third on January 1st. I would have rather not had the new year start off with my son being hospitalized. His seizures had become a monthly occurrence but they seem to be under control. I hope it stays that way. His medicine seems to be working quite well.

Seizure Management: A Constant Concern

One of the main concerns when raising an epileptic child is managing the seizures. This usually involves observing triggers, tracking seizure patterns, and adjusting medications. You always have to be prepared for a seizure. They can happen at any time. Sometimes you can take every precaution imaginable and it can still happen. It’s impossible to tell how long it will last.

Adaptation

Flexibility becomes a way of life. You have to be able to adapt to the unexpected - from canceling plans due to an episode to changing routines to accommodations. This can be very challenging but it also teaches you to embrace the moment and enjoy the little things in life.

Educating Others

Despite being one of the most common neurological conditions in the world, little awareness is raised of epilepsy. You have to take it upon yourself to advocate and raise awareness. As you share your child's journey with friends, family, and the community, you shed light on the condition and break down misconceptions. Educating others helps create a more inclusive and understanding environment for your child.

Celebrating Resilience

Your child's journey becomes a testament to their strength and resilience. Every seizure they overcome, every obstacle they conquer, and every milestone they reach is a triumph of their spirit. Witnessing their courage fosters a deep sense of pride and admiration.

Finding a Support System

Handling the challenges of raising an epileptic child can be emotionally draining. Building a support system with friends, family, and other parents who have had similar experiences can provide a much-needed lifeline. Support groups and online communities can off advice, encouragement, and a safe space to express yourself to others who would understand.

Conclusion

Raising a child is no walk in the park. When your child has epilepsy it makes things that much harder. You have to take more precautions and certain activities become off-limits because there’s always a chance of a seizure. It also means they can’t pursue certain career paths, and may never drive a car, among other things. You worry that your child won’t be able to be independent. You have to learn to be patient and adaptable. Seize every moment (excuse the pun), and do everything you can to see your child grow up and succeed.