Kids, Live

A new normal with epilepsy

The sun rises from the hospital window providing light into our lives after 5 days filled with uncertainty. A new morning brings peace and stillness. Everything comes into perspective, and we understand our daughter better.

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Suddenly, a storm came into our lives, and we were not quite ready for it.

Benign Rolandic Epilepsy (BRE). That was the diagnosis after days of multiple daytime seizures, one trip on the ambulance rushing to the ER from school, calling teachers to know their side of the story, many questions from hospital staff, calling family members to dig into medical history, neurological tests, and two nights in the hospital. Suddenly, a storm came into our lives, and we were not quite ready for it.

I am not hiding that, in the beginning, I cried a river. I questioned my motherhood in this whole process. Why didn’t I notice this earlier? What could I have done better? What? How? Why us? Many things indicated that for our daughter, this situation started a long time ago. I was in shock and feeling powerless. However, there is some truth when people say: “Después de la tormenta llega la calma” (After the storm comes calm). How was I able to find calmness?

Reach out for strength. The first thing I did when the school called was reaching out to my husband, then my mom, then my boss, and finally my best friend. I am grateful to be surrounded by amazing and smart people. My husband did all the calling to the rest of the family and stayed with us the whole entire time. We acted as a team. My mom and my step-father took care of my son who was still at school. They made sure that I had my Puerto Rican coffee, some board games, and a change of clothes. My boss gave me the reassurance that my family comes first. My best friend gave me composure and sisterhood.

Overall, I am grateful for all the family members and friends that were not afraid to call, text, or visit. Family and friends that were not fearful of listening to my story over and over, while I coped with it. Thank you for letting me cry without judgment. Thank you for not forcing me to believe that everything was ok when it wasn’t.  Thank you, I needed your kind words to be strong for my little girl. Because I reached out, I became emotionally stronger for my family.

My husband and I are thankful that 90% of the kids having BRE will outgrow the disorder. May the odds be in our favor.

Read, ask questions and educate yourself. Certainty, BRE seems like the best scenario from the many possibilities of what could have happened. In less than a week, my whole family became aware of epilepsy and began to understand the full spectrum of this neurological disorder. I am grateful that this is not a tumor and it is treatable. My husband and I are thankful that 90% of the kids having BRE will outgrow the disorder. May the odds be in our favor.

I am grateful to live in a college town with one of the best Children’s Hospital in the state of Florida. I am appreciative that doctors, nurses, and hospital staff answered our questions with kindness. They treated me with empathy while I was trying to learn in the middle of uncertainty and sleep deprivation. Many of our friends and colleagues were there to help weed out the facts from the noise of the internet googling frenzy. After understanding better what epilepsy meant, I was able to shut down any other story besides my daughter’s. Epilepsy is diverse, complex, and manifest differently in each patient. No epilepsy story is alike. In my opinion, there is peace when you understand the facts.

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There was serenity in my voice because I honestly believed what I was saying to my little girl.

A new “normal”. While in the hospital, I remember my daughter crying because she wanted to be “normal” again. She was asking why this was happening to her and why she was always in the hospital. Her tears broke my heart, but I knew that this was my moment to be strong. After a deep breath, I told her: “Mi amor, normal is what we have now. People have problems all the time, and that is normal. Normal is you now, being here with mom and dad, no matter the place. Normal is hugging and kissing you right now. Normal is that your family love for who you are.” There was serenity in my voice because I honestly believed what I was saying to my little girl. After a small pause, she stopped crying and started smiling again.

I know it will take some time for all of us to redefine what will be our new normal. Right now, our new routine includes checking if she is okay without her noticing and having alarms twice a day for her pills.  I started a journal to record her daily activities. Like a scientist, I want to collect data to make informed decisions when we talk with the doctor.

For the time being, my daughter’s “new normal” will not include horseback riding, swimming alone in the pool, or being alone in the bathtub. Everything else is pretty much the same: eat, play, run, gymnastics, Netflix, video games, and sleep. If you are one of the lucky people to know my daughter, just remember, epilepsy is under control, and it is part of our life now.

 

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1 thought on “A new normal with epilepsy”

  1. Oh, that is so scary! Your poor baby. I’m so glad you have a diagnosis and such a great support system. Your daughter is also so so lucky to have a mom like you who is able to ground her (new normal) and also be positive. Love love love love love to you.

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