‘We were in a state of shock, but Drew was all smiles with the doctor. ‘Momma, I will be alright.’: Mom open’s up about son’s journey with epilepsy

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“December 14, 2006, we welcomed our son Drew Parker into the world at 1:10 p.m. He was perfect…8 pounds 7 ounces 21 inches long.  He was a beautiful baby with the bluest eyes. Our family was complete. I had a normal pregnancy. Fun little fact, Drew was born on his older brother’s due date! We brought him home and life with 2 littles began! It was a little hard to adjust at first. An almost 2-year-old and a newborn, both in diapers, and my husband had to return to work right away. I felt like I struggled. How was I going to give my oldest the attention that he needed while tending to a newborn all by myself? Well, we managed and before we knew it, Drew was 10 months old, and the story of who he is really began.family photo in hospital

At around 10 months old, we discovered that Drew was not passing any sound through his ears. He wasn’t cooing as much as he should have been nor was he crawling or even attempting to. I just thought that he wasn’t ready to be mobile yet and really didn’t think about the cooing as something I needed to worry about right away. We ended up having tubes put in his ears when he was 14 months old. It’s really hard to say when he may have actually started to hear us, as not much really changed right away.

We did start to notice, maybe about 2-3 months after the tubes were placed, that he was hearing things. Or so we thought. One night, we were eating dinner, and Drew had a body shudder…like when you get a chill. We thought that something startled him, but the house was quiet. We paid no attention to it and continued thinking that he was finally hearing. Little did we know his journey was just starting. Because he was lacking in all fine motor skills, could not speak well, and was considered developmentally delayed, Drew went through speech therapy and occupational therapy weekly at our house.

He learned sign language to help him get past some language barriers. He also used picture charts so he knew what steps to take during the course of the day. We adjusted and continued with life. Fast forward to age 3. Drew was enrolled in the local head start program as he was still needing therapy services. He didn’t like going at first. He was starting to have balance issues and the body shudders were happening quite often now. When I say quite often, I mean multiple times a day since we first noticed it happening at age 16-18 months.

baby phoyo
Courtesy of Amy Ramme

Drew had a wonderful teacher in head start. Halfway through the school year, she noticed he was starting to stare and he was also wetting his pants. It got to a point where he was not able to be aroused out of his staring. So, she invited her husband, who is a doctor, in to observe Drew. It didn’t take long for him to have a diagnosis and letter written to his pediatrician about what he observed. His teacher met with us and discussed what her husband thought was going on…that Drew may be having seizures. So, we met with our pediatrician, who got us scheduled for an EEG rather quickly.

Now, we had never had to have one, nor did I really understand the type of environment needed to have a successful EEG. We went to our local hospital and had the EEG in a small room. It lasted 30 minutes. I and my oldest son were also in the room with Drew. I was tasked with keeping them both quiet enough to get good results while listening to people pass in the hallway outside of the ‘quiet’ room. We finished after felt like an hour-long test and the results were sent out to a bigger city hospital with specialists to be read.

We got the result maybe two weeks later, and it came back clear. Our son was fine. A few more months go by, and his symptoms are still present, and he doesn’t seem to be progressing as he should be. So, we were referred to a pediatric neurologist in another big city about 2 hours away. This time, the EEG was a sleep-deprived EEG, lasting almost 2-3 hours. We had to travel back the following week to meet with the neurologist and get our results…which came back as epilepsy.

baby smiling
Courtesy of Amy Ramme

We didn’t know how to react in the office. I don’t think I cried right away. We were both in a state of shock. We were there but not there. We looked at our Drew…who was all smiles as he interacted with the doctor. We looked at each other very confused as to what we just heard. How could this be? The only thing that I can honestly remember about that day is Drew telling us in the car, ‘Momma, I will be alright.’ I just lost it then.

He was only 3 1/2 years old. How was this fair to this perfect little boy? How was I going to be able to care for him? What did I do wrong during my pregnancy? I had so many questions that I felt I had no answers to. We had to return to Green Bay, WI, for a sedated MRI of his brain. I work in a hospital. I’m pretty used to seeing people being put to sleep and getting IVs started. But when it was my own child, my experience really didn’t seem to matter.

The nurse warned us that it happens quickly and with the little dose of meds that he was given, they only had a certain amount of time to get the scan done. I did cry and I did try to hug him one last time before they wheeled him away from me. That 30-minute scan seemed to take all day. They wheeled him back, and when he woke up, he looked around the room and stated, ‘I did it!’

kid riding bike
Courtesy of Amy Ramme

After the MRI, we needed to have a 24-hour video monitoring admission to the hospital. When all was said and done, Drew was diagnosed with Absence and Myoclonic seizures. The staring or Absence seizure is when he would pee his pants and could not be brought out of them. Those ones didn’t last long, maybe a minute. The body shudder, aka the chills, would usually happen about 10 times a day.

We were started on meds right away. This went on for almost 7-8 more years. We had many EEGs, a few 3-4 day EEG home studies done, and lots of lab work. He also continued with speech and occupational therapy. School was hard. He was never learning at the age that he was. Everything was modified for him, and he spent a lot of time in the special education room.

He would go to summer school to try to keep up some of what he learned during the school year. I would have words and math problems up around our kitchen island to help him. We even got him a tutor for the summer. No matter what we did, he was never learning at the age and grade level that he was. This still holds true to this day, and he is now 15. We tried to let life go on as normally as we could have.

son with stuffed animal
Courtesy of Amy Ramme

Drew learned to ride a bike and a push scooter.  He absolutely loves the water and has no fear of it. He would just jump in a pool and never worry that he didn’t know how to swim. He loves to camp as he had people to play with. Drew was loved and liked by many, and the kids in his class were his ‘friends.’ But he was never invited to play or to birthday parties.

How do you react when your child asks you why no one will play with him? Drew didn’t play rough and tumble like the boys in his class. He would try, but it was very short-lived. He would end up playing with his brother and his friends, and he was so delighted when they included him. In the 4th grade, Drew was due for his evaluation from the school psychologist.

Let me just tell you, the meeting didn’t go well. The principal had to end it quicker than planned. Sitting across from me, was this 20 something with no kids and what seemed like no compassion or knowledge of kids. She was trying to tell me Drew was two words that I cannot say. I was crying, Drew’s teacher was crying. The situation was a hot mess, and I wanted no part in it.

mom and son
Courtesy of Amy Ramme

After speaking to my husband and our pediatrician, we decided to have Drew evaluated by a neuropsychologist. After all, this professional would be more accurate than a school psychologist, right?  After 2 long days and many hours of observations and questioning, we had an answer and our son now has a label attached to him and his medical chart.

I didn’t know how to handle that information other than anger. As we listened to the doctor, my husband and I both took something different away from the meeting. We also have a 16-page report should we need reminding of what was actually said. Drew’s IQ is very low; he will most likely not go to college and earn a 4-year degree, he may get married, and he will hold a job, blah blah blah.

For one thing, I didn’t graduate college with a 4-year degree. Many people don’t. I’m okay with that. He’s also so much more than a number, and I feel like I’ve spent so much time defending that, trying to get others to see he’s also a human being who’s very in touch with his feelings and those of others. As for a job when he’s an adult, whatever makes him happy is what we want for him.

mom and dad selfie
Courtesy of Amy Ramme

We know there will be challenges…we didn’t need a huge report to solidify that. Although, I guess I did ask for it as I couldn’t accept what the school psychologist said, and it turns out that the 20 something with no kids and compassion was 100% correct. We know that he won’t graduate high school with a diploma…he will receive a certificate of completion. And that’s okay! There are now tools and resources made available to him that will only help in the long run.

At the same time that we were getting this news, we also finished a one-year normal EEG pattern for Drew! That meant that Drew was able to come off the meds and was discharged from his neurologist’s care. What a moment for all of us! Our family of 4, sat in the doctors’ office as he said, ‘GO HAVE FUN DREW!’ We all looked at each other and smiled, but we were bursting inside! We had waited so long for this day!

Of course, we celebrated by taking him to Chuck E Cheese before we traveled home. Before we knew it, summer was over and life with epilepsy was behind us. This was in 2018. Fast forward to 2022. Thursday, January 27, 2022, to be exact. Our lives were flipped upside down as we watched our son be put into the back of an ambulance after school. Drew had what I now know was a Grand Mal seizure in the hallway of our home.

professional photo of son
Modern Image Photography

This happened out of the blue. This is something that we have never experienced before and the image of him on the floor will forever be burned in my mind, as will the sound of him gasping for air. My husband was in the ambulance with him, and I actually beat them to the hospital. I probably should not have been driving considering my state of mind. We got to the hospital a little before 4 p.m., and he had another Grand Mal seizure at around 5 p.m. Again, more images burned forever in my head.

He dislocated his right shoulder during this one. We have been an emotional wreck since then. We are constantly asking him ‘Are you okay?’ We had a bunch of appointments in the days following the seizures. We switched back to his pediatrician and also started physical therapy to help strengthen his shoulder.  We tried to move forward as normally as we could. Getting to a place where I can once again let him out of my sight and be a kid again will be hard. I’m not sure if I will ever be able to do it or even talk about this without crying. I’ll get there. We had almost 5 wonderful years of no meds and ‘normalcy.’ He grew so much, as did we.

Let’s fast forward to March 7, 2022. The day we had the EEG. It was a long day. He could only sleep for 4 hours during the night, so we went to bed at midnight and back up at 4 a.m. We had to be on the road at 5:30 a.m., and we also had to keep him (and me) awake until we arrived at the clinic. In true Drew fashion, he was all smiles, charming and polite.

son in hospital
Courtesy of Amy Ramme

He amazes us to no end. He never questions the WHYs of this situation…he never says, ‘Why me?’ He just goes along with steps, rules, and directions for a good test outcome. The WHYs are always left up to us, the parents…as we are always asking it over and over…’Why Drew?’ ‘Why us?’ This isn’t fair to him, to us. How are we supposed to let him do ‘normal’ things now, without watching him like a hawk? Constantly asking him ‘Are you okay?’

Truthfully, Drew doesn’t really know any different. If you know Drew and have ever held a conversation with him, just listen to him. He’s wise beyond his years. He’s been teaching us about acceptance, love, and kindness without us really knowing it. He truly cares for all around him and wants to give to others more than receive. He’s an exceptional boy with a huge heart of gold.

And, as I sit here and question what I may have done wrong during my pregnancy, I’m also sitting here looking at a child who is just perfect the way he is and seeing all of the things we have done right as his parents, which far outweighs the guilt of the latter. We are now going back for the results and hopefully getting answers as to why this happened. I know that we will get through this. It’s a familiar path. We will carry on as if nothing has changed. Drew will be confirmed this year, he’s attended 2 school dances with his special ‘friend,’ he was able to finish the basketball season as the manager (a ‘job’ which he loves dearly), and this was going to be the year that he also started to learn how to drive.

If I have learned anything during this journey, it’s not about epilepsy. It’s about slowing down and letting your child help you see the world through his eyes. That he is perfect in every sense of the word.  He has taught us that even though he has different, maybe even special needs, it’s okay to be different, unique. This is who he is meant to be. He will change the world and do great things! I just know it!”

kid on jumbotron
Courtesy of Amy Ramme

This story was submitted to Love What Matters by Amy Ramme from Iron Mountian, MI. You can follow her journey on Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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