My Epileptic Jesus-Loving Girl
Dena Johnson MartinDena Johnson is a former single mom to three amazing kids: Blake, Cole, and Cassie and wife to her high school friend, Roy. She strives to follow Christ each day and to lead her children to do the same. She delights in taking the every day experiences of life and turning them into biblical lessons for her children. Dena's daily prayer is simple: Lord, my life is yours. Live through me. Love through me. Parent through me. Let me decrease that you might increase. Dena is the founder of Dena Johnson Ministries, a non-profit organization dedicated to helping people find beauty through the brokenness of this life. Her heart's desire is to use her own pain to point others to the power of God who redeems every hurt, every pain. You can contact Dena at Dena@denajohnson.com. You can also find her blog at Dena Johnson Ministries.
- 2019 Mar 26
July 15, 2016. I was recovering from surgery, moving very slowly. It was around 7:00 am when my oldest son came to get me.
“Mom,” he began, “you need to come to Cassie’s room.”
“I’ll be there in a minute,” I replied.
“Mom, you need to come to Cassie’s room.”
“Just a minute. Let me finish what I’m doing.” Despite my words, I thought I could hear an urgency in his voice.
“Mom,” Blake said. “Cassie is having a seizure or something.”
With those words, I ran as quickly as my post-operative body could to my daughter’s room. There she was on her bed, her entire body convulsing. She was unresponsive. Her pillow was soaked from the drool running out of her mouth. She was making a strange gurgling sound.
And in that moment, I was mom...not Dena, RN. All of my training on the neuro floor working with brain injuries—including seizures—escaped my mind. I had no idea what to do other than to tell my son to go get my parents.
“Go get Grandma and Pa,” I told him as I sat by my daughter’s side, helpless as her body continued to convulse.
When my parents ran through the door, we called 911. We continued to sit helplessly by her side, crying out to God to stop the seizure. Just as the paramedics arrived, she began to pull out of it. Her speech was still slurred and she was confused, trying to figure out who was hurt and why there were strange men with a gurney in her room. We loaded her into the ambulance as the paramedics continued to monitor her condition. I sat by her side, holding her hand.
At the hospital, they ran tests looking for a source of infection. They did a CT of her brain to check for tumors or other reasons for a seizure in a previously healthy child. With no clear answers, we were sent home with the explanation that it was probably a one-time event, common in children.
Over the next couple of weeks, I was scared to leave her alone. Finally, after three weeks, I was confident it was over and I decided to leave for a couple of hours.
About 8:30 am, my younger son called.
“Mom,” he began, his voice trembling, “Cassie is having another seizure.”
“Call 911 and I’m on my way home,” came my immediate response.
As I drove like a mad-woman to my home 30 minutes away, I made phone call after phone call trying to find an adult to be with my children until I could get home. I finally reached a neighbor who ran across the street to be with my children as they waited for paramedics. I pulled in right behind the paramedics, and we loaded her into the ambulance for our second trip to the Emergency Room where they ran more tests.
Because it was her second seizure in a very short amount of time, they contacted the pediatric neurologist who wanted to start her on medication. We were instructed to follow up with the neurologist where my sweet daughter was eventually diagnosed with epilepsy. Our ordinary life suddenly was changed drastically, revolving around a medication regimen and regular doctor appointments and a baby monitor to listen for a seizure in the middle of the night. Cassie had limitations on swimming and heights and being a normal child. And me? I became a hovering mom, watching for signs of anything abnormal.
Cassie didn’t understand. So much pain. So much loss. She had just lost her dad a few months earlier, and now she was facing a life-altering illness. She became depressed, withdrawn. Every day—morning and night—I would hold her close and pray. “Lord, do an amazing work in her so you can do an amazing work through her.”
After three years, we have finally found a medication that seems to work. The side effects of this medication are minimal, and my girl has once again become an outgoing, vivacious young lady. She has made peace with her diagnosis while holding out hope that God will provide full and complete healing. Her light shines brightly as she clings to her Father, trusting Him with all of the pain and loss she has experienced. She is amazing!!
Why do I relive this story? Why do I tell you about my sweet girl?
For one thing, I am constantly inspired by her love of Jesus, by this amazing faith she exhibits at the age of 14. She no longer complains about her diagnosis; instead, she laughs about it (Proverbs 31:25). She has a sparkle in her eye and a spring in her step unmatched by others. She exudes confidence and hope. She bubbles up with words of encouragement. She constantly leads others into a closer walk with God. God is truly doing an amazing thing in her and I know He is also doing amazing things through her.
Second, Tuesday, March 26, is Epilepsy Awareness Day. I knew little to nothing about epilepsy (despite being a registered nurse) until we began this journey three years ago. While it is a manageable disorder for many (including Cassie), it does alter your life. Cassie simply wants to be a normal child, and no teen girl wants her parents listening to everything going on in her bedroom by way of a baby monitor. But, the baby monitor has been essential, waking us many times in the middle of the night as we rush to her side to administer medication to stop her seizure. No teenager wants to live in fear of the entire school seeing her collapse to the ground, convulsing, drooling, grunting as the teachers rush to her aid and administer a medication in a method that defies your dignity. No teenager wants to wonder if she will be able to get her drivers license like all of her friends. No teenager wants to face the life-changes that have resulted from the diagnosis. If you don’t know anything about epilepsy, I encourage you to read up on it. You might not even know it, but there are probably people around you who fight this battle in the silence.
Third, I just want you to know that once again I see God taking these things designed to rob us of the abundant life God intended for us and using them to mold us into His image. Cassie is a warrior!! She faces the unknown with such an amazing faith, a belief that God is simply using all of the pain she has experienced to prepare her for the future He has planned for her. He uses all things for our good and His glory (Romans 8:28). She has such a compassion for those who are hurting because she knows what it is to live in fear of the unknown disease that grips her life. She is a master at allowing God to use her pain and loss to make her more like Him.
And can I add one more thing? Roy has been such a support through this all. He was at the hospital for both of her first two seizures. He is always right by my side timing the length of the seizure so I know when to administer medication (I always forget that part in the middle of the crisis). He is always supporting and encouraging, both of us. I don’t know how we would have gotten through this battle without him by our side. And my sweet girl one day told me that much of her spiritual growth is attributed to finally understanding the unconditional love of a daddy. Thank you, my sweet knight in shining armor!
We pray daily that Cassie will be one of the 70% of children that outgrows her epilepsy and is able to go off her medication. We pray God will heal her fully and completely. But even if He doesn’t…
My girl is a rock star!
Or…in her words…an epileptic, strep throateptic, Jesus-lovin’ freak!!
I love that girl!!