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The Day I Met Epilepsy

I had no idea on June 6th 2014, that our lives were about to change forever.

It was 9:00 am. Zach, our 9-month-old baby girl Remy, and I were just waking up when Remy began acting very restless. Typically, when she was restless, nursing her would get her right back to sleep, but that wasn’t working. This time, Remy couldn’t settle down. She rolled back and forth as if she were having a nightmare, whimpering and whining almost like she was nauseous.  I asked Zach if he would rock her back to sleep while I got up to make coffee. Zach always has such a way with soothing babies. He has patience while they cry and a magic pat on their butt, that typically calms them down.  As I made my way to the kitchen, I heard silence and knew that Zach’s magical ‘pat’ did the trick.

A few minutes went by. Zach called out for me in a panic.

“Jody, something is wrong with Remy.”

The tone of his voice told me to run.

I dashed in to see Zach standing in the middle of the room holding Remy.

“She is really stiff. She isn’t breathing.”

Remy’s eyes were open, but she didn’t respond. The life inside of her seemed to be fading, and fast. Her lips were a grey-blue and spreading quickly to her nose and eyes.  She looked as if she were dying, or dead. We laid her on the bed and shook her as if to get her to snap out of it. She was so stiff and still that whatever we tried, did nothing. Then her right arm began shaking.

I started to pray as if I needed to let God know what was going on because surely if he were paying attention, He would never let this happen.

“Please God, show me what to do. Don’t let Remy die. Help! Help! Help!”

Calling for assistance

I picked up the phone and dialed 911.  Time started to slow down. Every second felt like forever because everything I was doing wasn’t fast enough. It was like a dream where you are running, but your feet won’t lift from the ground.

“My baby is nine months old, and she isn’t breathing, she is turning blue, she’s stiff, and we can’t get her to respond to us,” I said, as calmly as I could muster, but knew I must have sounded panicked.

“OK, I will guide you in performing mouth to mouth.”

I clicked my phone on speaker and placed it on the bed so Zach could hear and listen to the dispatcher’s directions.

“Lift up her chin and blow in her nose and mouth at the same time. Blow with the air that is in your mouth and not air from your lungs. Do this slowly and repetitively. Now, how is her color now?”

“It’s better, she is turning pink again, and she is waking up. She is starting to make noise and look around.”

“Ok great, the paramedics are on their way.”

“She is turning blue again” Zach chimes in “I will keep going.”

I heard the sirens of the firetruck and ambulance getting closer. I ran to the front door to let them in. As they rushed in, a sigh of relief came over me. ‘We weren’t alone anymore.’

About 12 people filled our room. Zach and I backed up and let them take over. One of the paramedics pulled me to the side while everyone was working on helping Remy.

“Your baby is having a seizure. We gave her medication in her nose that should have stopped it, but it isn’t working. We are going to take her to the hospital.”

“Absolutely,” I said, or thought, or nodded

As I ran to the front seat of the ambulance, Julian followed me and asked if Remy was ok

“I don’t know Julian, but now is the time to pray.”

To the hospital we went

I rode in the ambulance while Zach and the boys followed behind in the car. The ambulance driver tried to talk me through what was happening. He said that when they heard the call about a baby who wasn’t breathing, they moved ten times faster than they knew what to do. Each one of the responders had children, and they felt a deep need to save Remy’s life.

I felt like I was having an out of body experience. One minute we were laying in bed wondering what we would eat for breakfast and the next minute we were on our way to the hospital begging God to spare our daughter’s life. How could this be happening? Remy was healthy, happy, joyful and so full of life. She was as close to perfect as a human can get, and this all didn’t make the least bit of sense. But regardless, this was happening.

When we arrived at the hospital, we rushed right into a room. There, waiting for us was a room of ten or fifteen hospital staff ready to get into action. There were so many people helping. I couldn’t get a good look at Remy to see if she was ok. All I saw was that they had an oxygen mask over her face and that they had stripped her clothes off down to her diaper. The EMTs and medical staff were busy transferring information and care instructions when I found a seat in the corner of the room to stay out of their way. Even though I quietly and calmly sat there, I was anything but calm. ‘was this the last time I would see Remy alive?’ I hoped not, but wasn’t sure.

The doc goes to work

The doctor stood at the foot of the hospital bed. He was young. Maybe 30. It looked like one of those TV doctors you know wouldn’t pass for being a real doctor. I hoped my judgment was wrong because Remy’s life was in his hands. It wasn’t, but two or three minutes that I realized that my first judgment was off because he knew what he was doing, it was evident. He had his hands folded in front of him intensely thinking. He started to instruct everyone in the room while pointing his finger this way and that way.  It reminded me of a conductor at the symphony. The entire medical staff was like the orchestra with their instruments in hand waiting for permission to play their music.  It all was new to me, but I could see that the whole team were very well versed in their particular field.

There were stickers and wires and tubes and machines all doing different jobs and connected to various parts of Remy’s body. I couldn’t see her but I knew the medical staff was doing everything they could to keep her safe and that gave me a little reassurance. I looked at the clock and then my phone, I had made that 911 call 35 minutes prior. Was she still seizing? I had no idea at that point but knew that if she was, it must have been an unusually long seizure. Maybe it wasn’t. I had no idea. I just sat there and prayed and waited, About 10 minutes went by, and the doctor finally turned towards me.

“Remy is having back to back seizures. She will come out of it and then go right back into another seizure. The drugs that typically stop seizures aren’t working, and we will need to give her something much stronger through an IV.  We are going to put a tube down her throat, give her a paralytic, some sleepy medicine and something for the pain so that we can safely give her the medicine and force this seizure to stop. This medication we want to use will work, but it will also stop her ability to breathe on her own. Do you have any questions?”

Um, well, um, well. Wait, what? All I heard was tubes and paralytic.

“Is Remy going to live?” I muttered.

“Absolutely! We do still need to do some tests and will transfer her to a pediatric hospital, but the worst part is almost over.” He was confident, and that was soothing.  

“OK, then I don’t have any questions,”

“You are very calm. We don’t see that from parents very often.”

Apparently, my outsides weren’t matching up to my insides because I was freaking out. I just didn’t want to add any more stress by acting like a crazy person and take attention away from them helping Remy.

After a few minutes, the drugs worked.

The seizure was over

Zach walked in after getting the boys settled in the lobby. He assessed the room and got the scoop from the nurse. The tubes were in, the medication administered, Remy was asleep, and the room calmed down. Slowly people started to leave the room, and Remy was laying on the bed asleep. There were tubes in her mouth, wires and stickers were all over her body, and I had no idea what any of them did, but the sight looked scary.  Even with being hooked up to machines, seeing Remy sleeping was the best sight I had ever seen. Quietness, peace, rest.

The worst was over

Remy was alive!

Since everything had calmed and Zach was with Remy, I left to see the boys in the lobby.  

As I walked down the hall to the waiting room, I knew I needed to put on a brave face. I needed to be strong for my boys, so they weren’t terrified like I was.  

The boys were sitting on a bench in the lobby. They both stood up as I walked in and hugged me.

“How is Remy?” Julian quickly said. The look on his face was very concerned.

“She is stable and sleeping. They gave her some meds to stop the seizure, and she is doing much better” I was as reassuring as I possibly could be. “How are you doing Julian?”

“I’m ok, I was scared, but I am ok.”

“Good, bud. Tyson, how are you doing?”

“Not good at all!” Tyson said, partially whimpering and completely distressed.”

“Oh, I know buddy, you are just worried about Remy. That is normal.”

“No, it’s not that.  It’s just that I can’t get the Wi-Fi to work and I have asked the lady at the desk three times what the password is, and it’s still not working.”

I laughed hysterically. Inappropriate yet hilarious, this was the first familiar and ordinary thing I had heard all day. The boys were stronger than I gave them credit for and they weren’t picturing the worst outcome possible like I was. I knew right then that it wasn’t necessary for me to put on a brave face for them. They could handle way more than I thought. It was in that moment that I knew, everything was going to be ok.

I would love to hear from you.

Leave me a comment below and share a story that changed the trajectory of your life. How did you get through that event?

The biggest events in our lives are typically ones that we never saw coming. Those moments will always be so fresh in our minds.

Thanks for stopping by. I cant wait to get to know you more and walk this journey together. Subscribe to my blog so we can continue the conversation.

Live Well,

  • Jacqueline Ruff

    Thank you for sharing your story with us! I remember the day we first met Epilepsy too! Although it wasn’t quite as scary as yours, it was scary enough that I’ll never forget it!
    I’m glad I found your blog! 💕

    • Jody Williams Warshawsky

      Hi Jacqueline,
      Thank you for your comment. I am sorry to hear about your experience. Is it your daughter or son or family that had a seizure?
      I think that it could have been any seizure and I would have been scared and worried the same. i hadnt really ever seen a seizure before and there wasnt anything that told me that Remy would have one.
      What was your experience like?

      • Jacqueline Ruff

        Hi Jody!
        It is my eight year old son that has seizures. Prior to being diagnosed with Epilepsy, he had never given us any indication that he would have a seizure. Epilepsy aside, he has no other delays or sicknesses, so this came out
        of the blue for us.
        I actually didn’t see my sons first seizure because it happened at school. The doctors at the hospital were sure that this was an isolated incident, until 6 days later, that’s when I saw his first seizure.
        It’s been two months since that first seizure, and he’s had three tonic clonic since then, and a handful of Absence.
        He has actually been having the Absence seizures for years, I just thought he was staring into space. I never would have thought it was anything more than that.

        • Jody Williams Warshawsky

          I am so sorry for your son. I have heard so many times about people having absence seizures and not knowing because it does look like day dreaming. Please give yourself grace because you wouldn’t know or even think that daydreaming could mean seizures. Especially because the people who have those seizures don’t recognize them as such either.

          I imagine that you feel very scared right now. Seizures are so scary because you never know when they will come. My daughter loves doing things like climbing to the highest point on the playground and sitting on the edge of the counter. That is not good for already paranoyd mothers. I bet you get those same fears. This is when I really try and practice living life in the moment and not imagining anything in the future because that always leads to worry and anxiety.

          Do you have diastat? And is your son on seizure meds now?

  • Macy Colon

    my life changed 1 month ago, the Thanksgiving day I spent it with my family and everything was fine, I had an amazing time but I did not know that the next day my family’s life was going to change completely, the night of thankgiving when I came back house my baby for that then 2 months old did not want to drink the full milk but I thought it was because she was very tired from the trip that night she slept completely until 6am that she woke up I gave her milk she only drank 1onz and she fell asleep, Check the temperature and she had it in 100.3 then decided to call her pediatrician I did not like how my daughter was acting, I explained and they gave me an appointment for 4pm but I kept her in observation but 4 hours later she got up and tried to give her milk but not I check her temperature but it go down but she was getting purple and she did not answer I decided to call her pediatrician again and I told her they changed the appointment for 1pm it was already 11:30 am it was getting purple several times but I just thought it was because of fever I never thought about seizures, when I came to the pediatrician, I checked it and saw how it got purple, and it tells me that she has a snoring in her lungs, and her oxygen at that time was fine but it was better to go to the hospital and them do more tests and so I did, when we got to ER I explain what is happening and they take me to a room and while I’m sitting in bed with my daughter listening to the doctor tell me that I have to admit her for 3 days because She is premature and the fact that she is turning purple means something serious and she tells the nurse to notify her if she turns back in at 5 minutes from the doctor. I made my daughter turn purple and I told her the nurse quickly connects the monitor and sees how my daughter’s oxygen and heartbeat go down quickly call the doctor and the next scene I’m seeing in front of me is my daughter in the arms of the nurse and listening to all ER running and screaming at the same time, they take my daughter to another room and put her in an incubator, they take off all her clothes and I see the doctor saying they have to do it and I just crying while I saw how they were on my daughter. The doctor comes to me and says I have I had to wait in the Family room because there was nowhere to sit at that moment in the room and they had to find me a chair, I sat for 10 minutes and called my fiance and told him what was happening and then I walked to the room and everything looked calmer but she kept lowering her heartbeat and oxygen and they had to put the ventilator to help her breathe and I was just waiting for them to tell me what was happening with my daughter, she was admitted to PICU and she was made several tests like EGG and MRI, once again her oxygen went down to 28 and her beats to 80 I listened the noise to the machine and I wanted to die, the results came out and the EGG showed that she is having seizures in the front and right area of ​​her brain and the MRI with many other things including a 90% chance of cerebral palsy and it is still very hard for me to understand many things and I have a hard way to continue fighting with my daughter and I am very afraid of what may happen with she, I only live one day at a time .. my daughter is 4 months old now and she is taking 2 medicines for the seizures and only 1 week ago she went back to live a strong episode of seizures with her, when her oxygen was affected

    The last picture is her now

    • Jody Williams Warshawsky

      Thank you for sharing your story. I have a few things to say about it but first, want to thank you for opening up and telling me what you have gone through. I know you are devastated, scared, confused, alone and desperate for this to all be over. And by the way, adorable little baby you have. What a little angel.

      You are doing a great job even though you may not feel like it. You followed your gut instinct. As a mother and human being, we have our instincts, but not everyone is as in touch with their intuition to follow that. For that, good job because you saved your daughter’s life and that is why God gave that precious little girl to you.

      You have just been overloaded with a whole bunch of terrifying information and at the same time no tools to know what to do with that information. I have been there. Here is my advice to you

      1. Breathe. You don’t have to have everything figured out right now in this second. Take a breathe and give yourself some love. You have just gone through a traumatic experience, and you probably feel like you are not equipped or ready for something like this of this magnitude. You are! Even though you don’t feel like it. You have your intuition and a deep love for your daughter. Those two ingredients will fuel you in making the right decisions. Trust that; it was given to you for a reason.

      2. Learn and study the things that the doctors have told you about your daughter. This will be time-consuming, and you will have to be creative but the more you know, the better you will be equipped to handle what is coming your way. When Remy was first going through this, I just let the doctors tell me what came next and just agreed with everything they told me. I then realized that the more I learned, the more help I was in directing the doctors on what to try and what to test for. You will be much more respected by the medical community if you come with some knowledge.

      3.Enjoy your baby. You will spend about 99 percent of your time going forward in protection mode. You are going to go through a tough and difficult journey. I promise it will be OK. You will learn to navigate. Don’t forget to enjoy the amazing child you have in the process. She will grow up, and you will look back at this time, and while it isn’t the babyhood moments you always pictured it to be, one day it will be memories that you want back. I was just looking at Remy when she was just diagnosed with epilepsy; she was so small. She was so cute. Most of the time I was so consumed with all the chaos that I forgot to enjoy the incredible moments that babies bring and the joy that she gave to everyone around her.

      4.Take the help!!! Whatever help is offered, take it. You may feel like you are alone most of the time but sometimes if your neighbors, friends, and family are asking you if you need anything tell them this “I’m drowning and I need everything, please if you feel like you want to give me something, i will gladly take whatever you want to offer” I was overwhelmed with taking care of my baby that a lot of times I brushed off peoples help because I felt like I didn’t have the time to think about what I needed or have time to write a thank you note or reciprocate. I learned now that people feel good when they help. Let them help.

      5.One step at a time. You will get through this, I PROMISE!! I have been where you are right now, and I didn’t feel like I would come out alive or that Remy would either. Trust the step you are on and have faith that the next step will hold your weight when you step on it.

      Macy, thank you for sharing your story. I will keep you and your daughter in my prayers. I mean that. Please reach out any time you want to talk.

  • leslie Ponzo

    Thanks Jody for being a brave voice and sharing your life with Remy! You are blessed with a gift for writing and so thankful the Lord is allowing you to share it with yourself and all of us! 💜 Your story mimics our first seizure encounter and our last with Ellie. We too had no diagnosis at the time. Scarey, terrifying life, however incredibly thankful and grateful for our PCDH19 community… we all simply “get it” and are able to encourage and support one another. Thank YOU Jody! 💜

    • Jody Williams Warshawsky

      Thank you so much Leslie. I know you do get it. It is very bizarre that we all find ourselves in the same shoes yet have never met each other or have any blood relation. We are definitely family with a pretty amazing group of little girls.
      Thank you for your comment and encouragement. It means the world to me.

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