If you really knew me you would know my mom has epilepsy, and her having epilepsy has made me the person I am today.
My mom got epilepsy when she was five years old. She got very sick from a virus that traveled into her brain, and she had to be put into a coma to stop her brain from swelling, this leads to scar tissue damage on her brain and gave her epilepsy. The doctors at the hospital told my grandparents that she was supposed to have brain damage, and not be able to walk, even told them she may come out of the coma as a paraplegic. So, my mom woke up with none of that except epilepsy, she was considered extremely lucky.
Growing up with a mother with epilepsy was basically a normal childhood, with playing outside with friends, fighting with my brothers, and thinking second grade was “hard”. Although I had to be more mature and understand what was happening to my mom at a young age.
My older brother, Michael, and I had to take on responsibility and be there for her. We had to know what to do when my mom had a seizure and how to help her afterward. My dad usually works until later in the evening, so if she was to have a seizure during the day it is me or my two brothers home to help.
Seeing a seizure for the first time
The first time I remember seeing my mom have a seizure was when I was six years old. My dad went into the store to pick something up and my brothers, mom, and I was waiting in the car. I remember sitting in the car when Anthony starts asking my mom a question but she was not responding.
We all look at each other confused when my mom begins to convulse. My brothers and I are all two years apart so we all were very young at the time. My little brother Anthony wasn’t too scared because he had no understanding of what was really going on.
Watching my mom have seizures will never be something I got used to. It always and always will be a scary thing to see. Simply because I can’t do much to help in a minute or two she is having one. You’re not supposed to touch or try to move a person when they are in this state as it could harm them. The only thing you can do is make sure the person is safe from falling over or hurting themselves.
Advocating for a cure
When my brothers and I got a little older, my mom wanted to get more involved with the Epilepsy Foundation. We started going to yearly Epilepsy walks to raise money for the cause. My whole family would come and support my mom and it made the walks a lot of fun. Going on these walks and seeing all the people who are going through the same thing as my mom was really amazing to see.
My mom has even joined the board of the Epilepsy Foundation, helping with fundraisers, bringing awareness to the cause, and setting up the walks at Point Pleasant. Over this past weekend, she received an award from the Epilepsy foundation for her work with the organization.
Epilepsy strengthens you not weakens you
My mom having epilepsy made me into a very responsible person. I always look out for her and make sure she is feeling okay. I had to be there for her when she didn’t feel good or hurt herself. My mom has broken bones and even had a hematoma in her brain from her seizures. Now, my mom having epilepsy is something that drove her to become an incredibly strong person.
Epilepsy brings obstacles but there’s always a way to make a new path for yourself
My mom used to work at NBC in New York until she had a seizure and they had to fire her because of it. She got her license taken away for many years from epilepsy having to rely on others to go places or not go anywhere at all.
My mom had to grow up with a disorder that can be triggered at any time or happen anywhere, with no control over it. These are just some examples of the many challenges she faced. But throughout all her obstacles she never gave up and just kept pushing forward. My mom didn’t let her disorder hold her back or stop her from reaching her goals.
After being let go from NBC, she started writing books and since has written over sixteen published books which are even sold in stores.
One of the first books she wrote included me and my brother in it, it was the book that started her writing journey. It’s called “My Mommy Has Epilepsy,” She wrote this book to help parents with this disorder, who have younger kids understand it and know a little bit about it.
The part of the book I am in is the part where she tells a true story about an experience with having a seizure with us around. I was two years old and Michael was four, the story goes, we were all taking a walk outside with our dog around our development when my mom falls over and has a seizure.
At the time my mom’s epilepsy wasn’t as controlled as it is now so she did not have as much of a warning about when she was gonna go unconscious. Anyway, she falls over and ends up cracking her head open on the concrete and my dog Princess starts barking and her barking brought someone’s attention outside, which saved my mom’s life. They called the ambulance and she ended up being okay. This part wasn’t included in the book but I figured to tell the whole story.
Good things come with patience
Now, once she got her seizures controlled, she got her license back. She went fifteen years without having one. My mom showed me that you should always keep your head up, and always be positive when life gets you down. It’s the reason I have grown up to be such a positive person myself. My mom taught me you can’t dwell on the bad things in life, but only find a way to make them better.
Feeling guilty
With my mom having epilepsy there were many times I felt guilty. Guilty for not being there when she had a seizure because there have been many times this has happened when no one was home. Not being able to be there for her to make sure she is in a safe spot, and guilt for not being next to her when she woke up.
Being alone after a seizure must be a scary thing, not knowing what happened or if you were hurt, or not being able to remember the little details about your life for a short time. How someone feels after a seizure is scary too, one minute you feel fine but then the next your body is drained, and you feel completely out of it. There was one time I came home from being at a friend's house, no one else was home but me and my mom.
I walked into the kitchen and there was glass all over the floor. I immediately knew what happened, so this wasn’t something shocking. But I go upstairs to my mom’s room first to make sure she didn’t hurt herself badly, I ask her if she remembers anything or if her head hurts, or if she remembers where she woke up, to try to piece together how she fell over. My mom luckily wasn’t hurt besides some cuts, but she easily could’ve been badly injured.
Seeing the world with a different pair of eyes
Growing up around my mom having epilepsy made me see other people differently. I am a very understanding person about this. My mom having this disorder made me see you really don’t know what others are going through until you get to know them.
Everyone has different challenges they deal with in their everyday life. My mom taught me to always be nice to others. Seeing her have her days where she’s upset about her disorder, she's told me that it's been just random people who give her a compliment or say something nice to her that really change her day.
My mom is the reason I chose to go into speech pathology in college and pursue it as a career. Growing up caring for her when she got hurt, and helping her when I could inspire me to go down this path.
I realized I want to continue to help people when I got older. Being there for my mom my whole life made me become passionate about wanting to help people when I got older.
#Epilepsy #Caretaker