On April 24, 2019 as I was getting ready for work, I sat on the couch across from my 15-year-old son who was putting on his socks, when all of a sudden he just stared at me and his upper body started shaking—almost like someone had put his finger in a socket. It was all over in about 10 seconds and when I asked him what was wrong, he told me that he just needed to wake up. When my oldest daughter walked into the room, I told her what had happened.
Of course she made a joke about the situation. Not knowing what I saw until he stood up and it happened again. We tried calling his name, but his face had a blank stare and he wouldn’t respond to us. And again, after about 10 to 15 seconds it was over and he was finishing the smart a** reply he had started for his sister before the jerks started.
I looked at my daughter and she looked at me, both of us silently saying what we were thinking through our eyes. Something is wrong. This isn’t normal. As I was texting my husband, telling him to call me so one of us could take him to the hospital, it happened yet again.
Now I was scared and upset because the prior November, my son came home with a big scar on his elbow. He told us that he had a muscle spasm and fell. We took him to the doctor and she told us that he needed to work his core out, but this didn’t seem like weak core muscles.
On the way to the emergency room he had one more. I knew that something wasn’t right. I could feel in my soul that this was going to be a life-changing moment for our family and more importantly my sweet, wonderful boy.
After an emergency room visit where no tests were run, I made an appointment with the same doctor who originally told us to do core exercises. I swore to my husband that if she didn’t listen to me when I told her something was wrong, that we were changing doctors.
This time, she listened and we had an appointment for an EEG that next week. We made sure that we were there on time and followed the instructions to-the-letter. We were told that we would hear the results in one week.
That was on a Friday. Monday afternoon the doctor called.
Juvenile Myoclonic Epilepsy. My son had a lifelong condition that only 10-20% of people can grow out of. The doctor started talking about medication doses, the possibility of him having grand mal seizures, MRIs and instructions on what to do in emergencies. In the span of a phone call, I felt like my son’s life was changing.
Would he be able to drive? Could he be a normal college kid in a few years and stay up all night partying? Could it become fatal?
I called my husband and told him, the questions and worry unspoken between us. Both of us were trying not to tear up. Since my husband works nights and was home, he and my oldest daughter would tell our son and I would answer any questions he had.
The only thing I received was a text from my son, asking how to spell the condition he was diagnosed with. I asked if he had any questions and he texted back, “No.”
Then he texted me, “I Googled it. I’m not going to let this bog me down.”
And without going into detail, because he has always been a person of few words, I knew that he was telling me that he was bigger than this condition. That it was just something that he had and not something that defined him.
He was saying, “Don’t worry Mom. I will take this on and win”. And with those simple words, I knew that he would handle this just like he does everything else in life—with a go-with-the-flow attitude.
My son inspires me to accept that things will be okay and to know that he is the young man that I am raising him to be. He doesn’t let life or situations get him down. He faces them head on.
Even though as his mom I wish that I can protect him and make things all better, I can’t. But what I can do is love him like I always have and let him determine how we handle his care.
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