Strength In The Storm: A Year In My Son’s Epilepsy Journey
As I sit and reflect on the last year, my heart has many mixtures of emotions. One year ago, our world was rocked when Jordan suffered a seizure while we were in Charlotte, North Carolina for a cheer competition.
Epilepsy is a word that I had heard before but I never realized it was a word that would become a part of our family’s vocabulary but it has made us stronger, more resilient and more grateful for the little things we have learned along the way.
In this post, I will be sharing an interview I had with Jordan and his first hand point of view along with some of the challenges we experienced this past year. This is only for informational purposes and should not be taken for medical advice.
Interview With Jordan
Taken November 30, 2024
Opening Questions
Can you share a little about yourself and when you first started experiencing symptoms of epilepsy?
“In high school, there were symptoms now that I look back, waking up in the morning for school and having facial jerks as well as feeling awake but sleeping but awake when I was extremely tired.”
What led to your diagnosis?
“A seizure in January 2024.”
How did you feel when you were first diagnosed with epilepsy?
“Annoyed, questioning why do I have to go through this with so many changes in the normal day to day routine.”
Impact of Diagnosis
How has epilepsy affected your daily life, both physically and emotionally?
“Physically there is not much of a change outside of having to consider myself in certain circumstances more often than not. Emotionally it has changed my perspective on life and caused me to appreciate every moment and every good day.”
What changes have you had to make in your routine, if any, since your diagnosis?
“Taking pills everyday and having to try to take care of myself better which is hard while being at school.”
Has your diagnosis impacted your relationships with family, friends, or coworkers?
“Meds had me upset at everyone, just very irritable but since the meds have changed, it’s much better and caused my relationships to be better. Having epilepsy made me realize it was important to be my true self, being more genuine and authentic.”
Coping and Management
What treatments or strategies have you found helpful in managing your condition?
“At first, taking meds will seem and feel pointless until you wake up in a stretcher.” Jordan did not follow the suggested treatment plan initially and experienced a breakthrough seizure in July 2024 after months of managing the seizures. “Don’t take keppra if you have any form of depression and try to be aware of your patterns emotionally so you can manage your schedule effectively. Just because you have epilepsy it doesn’t mean your life is over I just chose to stop mine. I had a lot to focus on rather than life in general. Just have fun in a safe way and be wise on the decisions you make.”
Are there specific challenges you’ve faced in accessing treatment or understanding your condition?
“Yes, I experienced a lot of depression with my first medication. As far as understanding epilepsy, I feel everything is online as of why things are happening. You just have to take care of yourself and be aware of your triggers.”
Have you found support from others, such as support groups, family members, or online communities?
“Support from family, they have always been nice taking care of me after the seizures and emotionally reassuring me.”
Raising Awareness
What are some misconceptions about epilepsy that you’d like to correct or address?
“That we can’t go to movies or other fun activities, we’re still able to have fun like everyone else.”
What advice would you give to someone who has just been diagnosed with epilepsy?
“Take life slow, ease back into the process you had before, take advice from your doctor and don’t take keppra, it’s rough.”
How can others be more supportive and understanding of individuals living with epilepsy?
“Everyone is affected differently but be patient with them and listen to the person who has it when they are speaking about having it.”
Looking Forward
What are your hopes for the future in terms of your health and epilepsy research?
“My future hope is to not have epilepsy and be completely healthy again. I hope there is a cure for epilepsy soon.”
How has this experience changed your perspective on life or personal goals?
“It has caused me to live life in a way that I am comfortable but also aware of triggers so I can avoid them and stay healthy.”
Is there anything else you’d like to share to help raise awareness about epilepsy?
“Jesus Christ is the answer and more understanding of your circumstances, he will be there to help you throughout it all.”
As a mother, hearing the news that my son had epilepsy was hard. While I have heard the term before, I was not familiar with it and did not know anyone who had experienced it so honestly I was scared. It is easy to be scared of the unknown but that lit a fire in me. If there is something I don’t know about and need to know about it, I go into research mode and educate myself to full capacity. I looked up various studies, medications, support groups along with first aid training for individuals who have family members living with epilepsy. There are great resources available and making sure to get connected with other parents who are going through similar situations can be helpful.
One of the hardest parts as a parent to a child with epilepsy was watching him wrestle with the emotional toll, the fear of another seizure, when or where it could happen, the frustration of feeling different as well as the courage it took to face everyday. All of these things were heavy burdens for someone so young to adjust to along with being in a new environment as a freshman on a college campus. Through it all however, Jordan showed resilience that kept me inspired each and every day.
The Challenges
This year had many challenges. Many sleepless nights spent watching and praying. Moments of hopelessness and fear for when the next seizure would be. Tears shed from the loss of normalcy and uncertainty for what was to come. With the challenges also came new strength, hope and the power of community as we gained longer periods of time between seizures while embracing the love and support of our friends and loved ones while walking this new journey together.
Finding Support and Gratitude
One of the greatest blessings of this journey has been the support we’ve found. Family, friends and even strangers who have rallied around us in many ways. Friends who stepped in and took care of the kids to student accessibility service counselors who helped with classroom and housing accommodations to help Jordan feel safe while on campus, all of these things helped us see the best of humanity.
Looking Ahead
While epilepsy remains a part of our story, it does not define us. Jordan has shown me what true bravery looks like. He has faced many challenges with the strength I could only aspire to. As a family, we have grown closer learning to cherish good days, celebrate the small victories and face the hard moments together.
To any parent walking a path similar to ours, you are not alone. This journey is not easy but lean upon your community, educate yourself and never stop advocating for your child.
The past year has been a testament to the power of faith, hope and unwavering love. As we move to the future, we do so with determination to make each day count. Here’s to a future filled with courage, connection and hope.
