This topic will probably be the most vulnerable I get in the newsletter, but I feel it’s important to share. Important for me and possibly important for one of you. 

I decided at the end of 2023 that I was ready to share more about our journey with Epilepsy. My biggest goal is to share some of the lessons I learned about myself, life, and how strong you can be when you have no other choice.

I’m just going to start from the very beginning…

When our daughter Sailor was 2 years old, she had her first seizure. It happened right in front of me. It wasn’t a grand mal, which was the main type of seizure that we learned about in nursing school. It was different. She was standing upright and out of nowhere her eyes rolled back and she fell face first on the tile floor. She never reached out to catch herself. It was like she passed out cold.

Thankfully, she wasn’t hurt, just terrified and a little disoriented. I remember knowing immediately, in my gut, that it was a seizure. Even though I had never seen one like that, something in me just knew and I couldn’t shake the intuition. 

When I told my husband what happened and what I thought it was, he dismissed it. This moment turned into a big point of tension for us, at the time. Now, looking back I know he was just being overly optimistic and trying so hard to keep me from going into a spiral.

I couldn’t sleep for days. I held her hand everywhere she went. I went into full protection mode because something in me knew it was just a matter of time until it happened again. 

*LESSON #1:

Always trust your intuition, even when no one around you believes you.

If you’re a mother, you know the intuition you have about your children is unmatched to any other feeling.

The minor detail I haven’t mentioned yet is that at this same time we were in the middle of building a house and due to our rental lease being up we were living with friends for the last few months of the build. Stress was high. 

A little over a week later, on December 6, 2019, it happened again. 

This time was different. She didn’t fall like the first time. This time she was off balance. It started as soon as she woke up. We called them ‘wobbles’ a term we still use to this day. 

She couldn’t stand up straight. She couldn’t hold her head up straight and her left arm and hand kept jerking uncontrollably. I took her to the pediatrician immediately. The ‘wobbles’ and arm jerking never stopped, even in the doctor’s office.

When I saw his facial expression as he examined her, my heart sank. My intuition had been right. He couldn’t give us a diagnosis that day. A neurologist would have to do that, and Epilepsy is not usually diagnosed until you have more than one documented seizure, along with an EEG reading that confirms it.

This was our first day of testing. We had an EKG to rule out any heart related issues and then an EEG. For reference: An electroencephalogram (EEG) is a test that measures electrical activity in the brain using small, metal discs (electrodes) attached to the scalp. Brain cells communicate via electrical impulses and are active all the time, even during asleep. This activity shows up as wavy lines on an EEG recording.

*see photos below for pictures of our first EEG

Another detail I haven’t mentioned yet, this one is not so minor, this is the same day that my husband boarded an 8-hour international flight for work. He didn’t know anything until his flight landed. 

If it had not been for my friend Michelle, I would have been alone. As a side note, we started calling each other ‘sister-wife’ or ‘wifey’, as a fun nickname we gave each other when both of our families lived in the same house. She became like a sister to me and this day it was carved in stone. She held my hand and cried with me as we watched the technician place tiny electrodes all over my baby’s head. She pulled out coloring books and crayons from God knows where to keep her occupied while I found myself struggling to breathe.

*LESSON #2:

Not all angels have wings.

You never forget the people who were by your side in your hardest moments.

Friends who love your children like their own are some of life’s biggest gifts.

About an hour after our EEG, our pediatrician called us to tell us the findings and that we would start her on medication immediately. Our life would never be the same.

On December 6, 2019, after the most overwhelming day of news and testing, we started medication. That day feels like it’s cemented in my mind and at the same time so hazy. When I finally came up for air, I did what I always did when I was scared. I called my mom. She came immediately and stayed for several days. She pulled me back down to earth and back to reality. 

*Lesson #3:

No matter how old I get, I will always need my mom. 

Another detail I have not mentioned: Michelle and I had just started a business that month, and had just received our first big order that needed both of our time and attention. Thankfully her daughters were old enough and willing to step in and help her get the work done because I was so incapable of helping anyone with anything. 

*Lesson #4:

Life can never be put on hold because of your suffering, the work still must be done. 

I felt like I was literally drowning. Drowning in google searches. Drowning in pity. Drowning in the “why us?” Drowning in next steps…doctor’s appointments…on and on. I was going down such a dark road. I needed someone to pull me back in, back into the real world. There was so much to be grateful for. I just couldn’t see it through the darkness. 

*Lesson #5:

It could always be worse.

There is always something to be grateful for.

This took me so long. It was a daily struggle for years.

*Lesson #6:

Take everything day by day, and even sometimes moment by moment.

The next steps were finding a neurologist and meeting to get a diagnosis and more clarity.

Our first neurologist was in Montgomery, AL. I remember not liking her from the first moment she walked in the room. She was cold and had no bedside manner. Since I have a medical background, I came in hot with a long list of questions. Apparently, more questions than her average patient. She made me feel like I was overreacting and that I was taking too much of her time. 

The thing I remember most is her explanation of treating epilepsy with medication. She compared it to putting out a fire. If we kept the fire suffocated for long enough it would go out completely.

Translation: If we treated epilepsy with medication for long enough it ‘could’ go away one day.

Truth be told, I’ve never heard any confirmation of this theory from our current neurologist and epileptologist. Regardless, I’m thankful for her theory and that she shared it with us that day. It gave me hope when I needed it so desperately. 

*Lesson #7:

Never settle, especially with doctors.

There is a good chance that there is someone better suited out there to care for you or your child. 

I knew from the moment we walked out of her office that we would never be back. I immediately started trying to find someone who had been in a similar situation with their child. Luckily, a friend of a friend had a similar story. I reached out to her, and she shared their experience and recommended Children’s Hospital of Birmingham. 

I was thankful for her, a perfect stranger, who gave me her time, trying to give me as much hope as possible. I remember her story ending in a successful brain surgery for her son and at the time of us speaking, he had been medication free for over a year. I was filled with hope.

I called Children’s that day and made an appointment. Just a few weeks later we were sitting in Children’s hospital of Birmingham, in a department fully devoted to epilepsy. 

We met with our new doctor. She was young, friendly, and so great with Sailor. She sat with me and answered all my questions. I never felt rushed or like I was overeating in any way. She sat with me while I cried. I was filled with more hope. Someone was willing to listen to me. 

We scheduled the next 2 tests for the following month:

-A 24-hour

EEG, in the epilepsy monitoring unit in the hospital. This is where they hook her up to EEG monitors and she is monitored on cameras for a full 24 hours. 

-A MRI, which would mean Sailor would need to be put to sleep due to her age. 

These tests were important to determine the type of epilepsy we were dealing with. This was vital in choosing the appropriate medication to control her seizures. At this point she was still having multiple seizures a day because the medication was not working like we wanted. We could only base our treatment off our explanation since we were never able to get a good video of her seizures.

Our doctors needed to observe the activity at the same time as the EEG reading to give an accurate diagnosis. During a normal EEG, light stimulation (blinking light directly in their eyes) is used to try to induce seizure activity but Sailor was never sensitive to light so we could never induce activity in front of a doctor in the typical timeframe of a visit. 

Fun fact: Anyone could have what appears to be seizure activity on an EEG and not actually have epilepsy. You must have documented seizure activity to confirm the EEG reading.

Another detail I haven’t mentioned. This was in February 2020. The next month, the whole world shut down.

No tests could be done.

No medication changes could happen. 

We just had to wait….

We waited over 5 months, with no clarity and with multiple seizures happening a day. During this time, so many things came up for us. As parents, partners, and individuals. 

I feel like it’s important to clarify that I’m sharing my perspective and mine only, since my husband is not writing this with me. He has his own journey, and our perspectives are uniquely our own.

Relief was one of the emotions that I was the most surprised by. Sending her to school every day was so stressful for me. I was constantly worried that something bad would happen to her. When she was home with me, I was still stressed but I was in control. I’m sure at least one of you can understand the feeling. 

Something else I struggled with was finding community. I decided to look for Facebook groups and even looked for hashtags to follow for epilepsy information and stories. I found so many pages and I joined almost all of them. All my social media was soon flooded with photos, videos, and stories shared from people about epilepsy. 

I was so overwhelmed. Epilepsy was everywhere. 

*Lesson #8:

Support looks different for everyone and can change over time.

Distraction can be support too.

I started noticing big downward shifts in my mood and mental health, but it took some time to identify the problem. I removed myself from every epilepsy group and unfollowed every account and hashtag. This was one of the best things I did for myself.

I started looking for ways to distract my mind, as often as I could. I desperately needed a break from the gloom and doom thoughts. I also found myself struggling to be a wife.

My entire focus had become Sailor. When her last seizure was. Did she get enough sleep?Constantly watching her video monitor while she slept.

I felt so much tension with my husband. We have such different backgrounds. He’s a business entrepreneur with little to no medical knowledge and I am a registered nurse. I never questioned the need for medication, while he was on the fence about the need for medication at all. As a side note, my husband has never been a huge advocate of medication of any kind, even Tylenol. I, on the other hand, would never have entertained the idea of her not being on medication.

We also had tension about how much I was trying to protect her. I honestly would have put her in one of the baby carriers that you wear on your back, if she would have fit, so I could always protect her. I didn’t want to be away from her, for any reason. He knew it was important to not smother her and give her a chance to live as normal as possible. 

He was totally right. 

*Lesson #9:

Mom doesn’t always know best. 

There were so many moments that he pulled me off the ledge and talked sense into me. So Many Moments. 5 months later we were finally scheduled for our 24-hour EEG and MRI. 

A 24-hour EEG is conducted as an in-patient procedure on the Epilepsy Monitoring Unit (EMU) over a 24-hour period. The patient is hooked up to EEG monitoring leads and is continuously monitored and watched on camera to observe seizure activity. 

This was necessary for us since no seizure activity had been witnessed by her doctors. For this test, our neurologist wanted to stop all medication for the test. This would make it possible to see the full picture and to determine how effective the medication was. I was so nervous about stopping medication. 

We skipped her breakfast dose of medication and headed to Birmingham bright and early. Within 30 minutes of our car ride, Sailor started having back-to-back seizures. 

I want to clarify what Sailor’s seizures look like. They can vary but typically they present as eye fluttering, head falling to one side, left side of body jerking/twitching, and if she is walking, falling at any moment. At this time, she had never lost consciousness during a seizure. 

By the time we made it to the hospital, she couldn’t walk without falling over. It was abundantly clear that medication was necessary.

*Lesson #10:

Being ‘right’ doesn’t always feel good. 

The nurse instructed us to push a little remote button every time we observed seizure activity. The first time I pushed the button, just a few seconds after she left the room, an alarm went off, lights started flashing and an entire team of nurses stormed into the room. It reminded me of a code blue, which if you have ever witnessed, you know how unsettling that could be for the patient, especially if she is a 3-year-old who has no idea what’s happening. 

They started asking her questions to check her orientation and did a full neuro assessment. She had multiple seizures while they were completing their assessment. After pushing the button over 10 times in a span of 15 minutes, they finally told us we could stop pushing it, unless we observed something new. They had seen all they needed to see.

One piece of good news was that we could go home a little before the 24-hour mark, but we had to stay overnight to monitor seizure activity while she slept. This was the most nerve wracking for me. I had read so many stories of people dying in their sleep from a seizure. 

I would keep her video monitor on all night and would wake up by an alarm at specific intervals during the night just to go back and watch for any activity while I was sleeping. Sometimes I would just go watch her sleep in her room. I did that every night for months. I’m not sure my husband ever knew the full extent of what I was doing. 

*Lesson #11:

Stressing over the unknown won’t protect you from it but it will steal time and joy. 

The next morning our neurologist gave us the update. We could now give her a detailed diagnosis: Localization-related (focal) (partial) idiopathic epilepsy and epileptic syndromes with seizures of localized onset, intractable, without status epilepticus. Just rolls off the tongue.

A more appropriate medication could be started immediately. And…. She had no seizure activity while she slept. To say I was relieved would be a huge understatement.  

*Sailor’s 1st 24-hour EEG

Next up was the MRI.

I was nervous about my 3-year-old being put to sleep, but I was more worried about what the test might tell us.

There are 2 major types of seizures:

–Generalized seizures typically start from all over of the brain.

–Focal seizures start in one area and spread across the brain.

Sailor’s seizures are focal. This could be due to many different causes:

-concussion

-fever

-genetic abnormalities

-brain tumor

(these are just a few examples)

I was fixated on the last one…brain tumor. An MRI would show if there was one. The days we waited for results felt like they ticked by at a snail’s pace. I remember crying to my mom on the phone. My biggest fear, from the moment I knew she was having seizures, was that there would be a tumor of some kind causing them.

I remember saying how thankful I would be if it was ‘just’ epilepsy. Epilepsy I could deal with. I could deal with medication, every day, for the rest of our lives. A brain tumor felt like a mountain I didn’t think I could climb. When our doctor called with the results, she gave us the news that Sailor’s MRI was clear.

NO BRAIN TUMOR. I never imagined feeling grateful to have epilepsy.

Repeating lesson #5

*Lesson #5:

It could always be worse.

There is always something to be grateful for.

I experienced a defining moment when were in the hospital overnight for the 24-hour EEG. On my way back from the cafeteria, I shared the elevator with another parent. On our short elevator ride, he shared with me that they had been here for almost a week. His 5-year daughter had been diagnosed with type 1 diabetes. I saw the circles around his eyes, and I heard the exhaustion in his voice, but his attitude was positive and encouraging.

The feeling I had for this stranger was impossible to describe. He will never know what he did for me in that moment. Here I was thinking our situation was terrible. Drowning in my own pity and negativity. So much fear of the unknown and things that were out of my control. In that moment, I was reminded that perspective was everything. I still say that nothing can ever humble me like walking into that hospital. 

Over the next two years we had a lot of highs and lows. I couldn’t even tell you how many times we have changed medication. For the most part, once we determined what we were dealing with, we were able to keep her seizure free for long periods of time. Once, we made is up to 8 months seizure free. To this day, that is still our longest stretch.

Something that has been challenging for me is the on and off symptoms. Let me explain…

We would experience long periods with no activity and in those periods, it almost felt like everything was normal. Multiple medications, twice a day, was so normal to all of us. It felt so routine and honestly all Sailor has ever known. It’s almost like we would forget she even had epilepsy, as crazy as that may sound.

When activity would start back, it felt like starting over. I felt like I had to relearn how to process and deal with it all over again. Not to mention, as she got older and taller, her falls became much worse. The bigger the body, the harder it falls. We even talked about her wearing a helmet. I have been so grateful for the long periods of ‘normal’ but it has taken me a long time to be able to easily jump back into protection mode when activity starts back.

After two years of medication changes, our doctor started to talk to us about the potential of surgery. Sailor was maxed out on all the doses of her current medications, which meant that if she started to have activity again, we would have to add a 4th medication or completely change her treatment.The key issue with this was the other medications that we would have to change to have more severe side effects.

I remember at the beginning of this journey, our doctor talked to us about what the future could look like and that if medication stopped controlling her seizures, surgery might be an option down the road. It just all felt so far away and now it was here.

Were we really going to entertain brain surgery for our daughter?

We went back and forth and eventually decided to move forward with the testing. We didn’t even know if surgery would be an option and we wanted to know before we put any more thought into whether surgery was a good idea. 

Repeating Lesson 6

*Lesson #6:

Take everything day by day, and even sometimes, moment by moment.

In January 2023 we started what we called our’ year of testing’.

Our doctor told us it would take months to get all the tests scheduled and they had to happen in a specific order. So off we went, taking it one test at a time.

Our first test was a Neuro Psych Evaluation. This test was important to establish a baseline of neurological and psychological state. The test took place in a small room, with a doctor that sailor had never met. This was frustrating, for me as a parent, and even more for Sailor. This doctor was a stranger with little to no skills with kids her age and the questions were so over the top. I was in the room while they completed the test and often thought that I wouldn’t be able to answer some of the questions, much less a 5-year-old. I could honestly get on a soap box about this, but I’ll spare you. 

Next, we had another MRI with sedation. After that we had an EEG. Then we had a MEG test. This was a new one.

Magnetoencephalography (mag-NET-oh-en-seph-uh-LOG-gruff-ee), or MEG, is a test that uses sensors to form an image of magnetic fields produced within the brain. Doctors use these images to pinpoint areas of brain activity that indicate epilepsy.

The MEG test is used with EEG and MRI results to create a full picture of her brain activity. We needed to identify the part of the brain that was lighting up when seizures occurred. The technological advances in modern medicine are wild. 

For this test, it was important that sailor was sleep deprived so she could sleep for a long period of time during the test, without sedation.  We had a lot of fun keeping her up late the night before and filling her full of sugar so that she would be tired enough to sleep during the test. 

After the MEG test we needed a CT scan to see all the blood vessels in Sailor’s brain. The CT scan was the last test before we had to decide if we were going to move forward with the first brain surgery. 

The first surgery would be a Stereoelectroencephalography (SEEG). This surgery is essentially an internal EEG. The neurosurgeon surgically implants electrodes (8 in our case) into the brain matter to better locate the origin of any seizure activity. The electrodes are placed into the brain through multiple holes in the skull. Each electrode is help in place by a bolt attached to the skull. The surgery takes multiple hours.

After the electrodes are implanted, the patient comes to a hospital room with the electrodes placed in the brain and stays for multiple days to record seizure activity. After enough information is collected, the patient goes back into the operating room to have the electrodes removed. This surgery had to be done to determine if Sailor was a candidate for another surgery that could remove or greatly reduce her epilepsy. Like any surgery, an SEEG is not without risks. One of the biggest risks being they could hit a blood vessel and cause bleeding in her brain. We took a few weeks and finally decided to move forward with the first surgery. 

As you can imagine, we were terrified. I went to my doctor a few weeks before the surgery and asked for medication to calm my nerves on the day of the surgery. This was a decision I really struggled with. When I am in the room with doctors, I have always gone into nurse mode. I give report like it’s the end of the shift and I can recite all the medication and doses Sailor has ever taken, along with every detail of her medical history. The hard part, for me, is always the waiting room. Once I’m away from her, I lose it. 

In this case, I had to keep it together for my husband. I was the parent who was comfortable in a hospital and with medical details and abbreviations. He was so far out of his comfort zone. I needed to be strong for him. He has and will probably always look to me to determine how serious any medical situation is and how he should react. 

*Lesson #11:

Never be afraid to ask for help.

We scheduled our surgery for June 8, 2023.

Since my husband and I can work remotely, we decided to take almost the entire month of May and go on a long vacation. We went to the beach and enjoyed every second being together as a family. We knew there was a risk that something could go wrong in this surgery, and we wanted to spend as much time together as possible.

*Lesson #12:

Time is something you can never get back.

Our first surgery was successful. 

We were in the hospital for 4 days and we had zero complications. I’m going to keep this part brief. I haven’t fully processed everything that came up for me during this time before and during our hospital stay. Nothing can prepare you for your child to have brain surgery. The emotions that came up for me, during those hours where we had no idea the fate of our child, are almost impossible to articulate.

After our first surgery, all we could do was wait. 

We weren’t just waiting for results. We were also waiting for an entire team of neurologist, epileptologist, and neurosurgeons to meet and formulate a plan. At this hospital, no one doctor can decide to move forward with surgery. An entire team meets and must agree that it’s the best option. We knew we could potentially have one or two options.

1.      Laser Ablation – a surgical procedure where a heat generated laser is used to heat and destroy a target area.

2.     Resection – a surgical procedure in which a portion of the brain is removed.

*These are very generic descriptions of the two procedures, but one is much more invasive than the other. 

In August 2023, the day finally came for us to meet with our neurosurgeon and our neurologist. They informed us that there were two locations where Sailor’s seizures were starting. One is right next to her motor cord (the reason why her motor function on the left side is so affected) and another in a different location. Because of the location and depth at which the locations are in the brain, the resection was not the ideal option. They would have to move so much brain tissue to get to the portion they wanted to remove, that it could cause more problems. 

A laser ablation, however, was an option. Since there were two locations, we could decide to do one at a time. Their recommendation was to start with the area that was not close to her motor cord, therefore it was the least risky option. 

We decided we would take some time to think through our options. Our doctors said there was no rush to decide and at the time of our discussion Sailor was not having any seizure activity. They said it would be best to wait until there was activity present so we could determine if the surgery was successful, much sooner. 

By August, we decided, along with our team of doctors that we were ready to move forward and schedule Sailor’s laser ablation surgery. We scheduled it for the second week of October 2023.

*Lesson #13:

In moments you have no control, patience is crucial. 

In the middle of September, Sailor got sick with the flu. It eventually turned into pneumonia, and we spent 4 days in the hospital on oxygen.She handled it like a champ. I can’t say it enough, Sailor is an absolute badass.

Unfortunately, this meant we would need to reschedule our laser ablation. It is very risky to go under any kind of sedation too soon after having an illness like pneumonia. The anesthesia team wanted her to be at least 8 weeks post pneumonia before surgery. So, we rescheduled. This time for December 1, 2023. 

The day finally came, and oddly enough we felt somewhat prepared. We had just been in the same pre op room and waiting room just a few months before. This time our stay would be much shorter.

*Fun fact: If Sailor was an adult, she would have been able to go home right after this surgery. For adults, a laser ablation is an outpatient procedure. That’s right, brain surgery could be an outpatient procedure. So wild.

Since Sailor is young, they wanted to keep her over night to observe her. She never complained of pain, not once. No headache, no soreness on her scalp, hell, she still has no idea that a huge portion of her hair is shaved. 

As I write this, in January 2024, we are over a month post laser ablation. We will start lowering her medication in a few months. It’s protocol to wait a certain amount of time post-surgery to start changing medication.We are hopeful that at the very least, she can live at her current quality of life, with significantly less medication.

Sailor is thriving.

She is happy.

She is loved.

She is the most outgoing, loving, unashamed human I have ever met.

She is the first one on the dance floor. (Our favorite dance song is ‘I Wanna Dance with Somebody” by Whitney Houston and we have a dance party, every night, in our kitchen.)

She wants to be a DJ when she grows up.

She inspires me every single day.

She is completely oblivious that anything is different about her. Taking medicine twice a day is second nature to her, and she never thinks to question it. She doesn’t understand the word Epilepsy and she is still too young to fully understand even if she did. Every time we go to the doctor, we talk about getting pictures of her brain and every time we go home with a new picture. She typically takes a brain scan photo to school to show her friends. She thinks it’s awesome.

We are still on this journey, and we might always be but something about this moment made me ready to share our journey so far. I couldn’t have imagined sharing it a moment sooner. 

Lesson #14:

Your heart will always tell you when it’s time to make a move, you just need to listen. 

Before I close out, I want to give you some facts ab0ut Epilepsy:

-1 in 26 people will develop Epilepsy in their lifetime.

-Around the world, about 65 million people live with Epilepsy.

-1 in 10 people will have an unprovoked seizure in their lifetime.

-Most seizures are NOT medical emergencies

Thank you so much for being here and allowing me the space to share this story. I am so grateful for you all. Over time, I will share more about the lessons I’ve learned and the struggles I’ve faced as a mother.

For now, this feels complete.

With so much love,

Charli