That moment came for me ten months ago. I’d love to tell you it was over after that, but that’s not the story I’m going to share with you today.
This moment in my life changed everything. It made me realize there will be times as a mother that I can’t help my child. There aren’t enough words to describe the feeling.
I’m a mother. I’m supposed to be able to make everything better for my kids. Now, I find myself staring my child in the eye, saying over and over again…
You’re almost done.
I’m here baby.
Don’t be scared.
The Moment It All Changed
Ten months ago, my husband and I decided to take our kids to surprise my mother in law for her birthday. She lives about three hours from us and it sounded like the perfect weekend getaway. It was perfect timing too. Our youngest had been sick the week before, but he was going on two days without a fever.
We loaded up the car, set the kids up with their iPads, and put a blanket on the baby. After a quick kiss for each of them and a trip to Starbucks, we were off. Our road trip went smoothly (or as smoothly as it can with two toddlers that need to pee every twenty minutes) and we were about ten minutes away.
Then I heard Baby Luke. It was a cry, but a silent shriek. My stomach immediately started to turn because I knew that wasn’t a normal sound he makes.
I unbuckled and jumped into the back seat. I expected to see my baby had pinched a finger, but no. I’ll never forget his face. He wasn’t peacefully resting… He wasn’t crying…. He was looking to one side and jerking his entire body.
Baby, look at momma.
Baby, what’s wrong?
Can you look at momma?
Please! Look at me!
At this point, I know. Something is seriously wrong with my baby. I immediately tell my husband to pull over and call an ambulance.
I started praying he was ok. I didn’t know what was happening. I kept asking myself why he wouldn’t look at me. Why wasn’t he looking to me to help him? Why is he still jerking? Why won’t it stop? Please, just stop. After we pull over, I immediately unbuckle him and that’s when I notice his skin. He’s burning up.
My husband is the man that holds in all of his emotions in the moment to be strong for his family. He stands strong to help me stay strong. This is one of the only times I looked to him for reassurance and saw he was as scared as I was.
I’ll never forget how helpless I felt the moment I held my convulsing child, unsure of what was happening to him or if he would be ok.
I faintly heard my husband in the background, telling them where we are. All I could do is stare at my baby. Then the convulsing stopped. Nothing happened. Silence. My husband and I stared at him waiting for him to look at us, reach out to us, need us. Nothing.
He didn’t move. He looked off to the left, but wouldn’t respond to anything.
Just then an EMT put his hand on my shoulder and grabbed my baby. He went straight to the ambulance and laid him on a stretcher. He started asking my husband and I questions and checking my baby’s vitals.
It took about an hour for my baby to move and give me the most welcomed hug I’ve ever given my children. It was the scariest hour of my life.
It turns out he wasn’t over his virus. His fever had spiked while driving and it caused a febrile seizure. I’ll never forget how the ER doctor explained the seizure to me.
It’s normal for some kids to have febrile seizures. Some kids are more prone to them, but they’re normal.
How was that normal? How can something so terrifying be normal?
Fast forward 9 months and one more febrile seizure later….
At this point, I knew what febrile seizures were. I understand my baby is prone to them and that he will most likely get them in the future. I feel prepared for another one.
Baby Luke was sick again. He has been taking Tylenol and Ibuprofen back and forth, every three hours (as our neurologist directed) and my stomach starts to turn. He starts to have a look and I know he’s about to have another seizure.
It happens. His entire body starts to contort.
Wait. This isn’t supposed to happen. He’s supposed to shake. What’s happening?
His eyes go to the side of his head, his arm goes above his head, and he’s still.
I yell for my brother in law to come downstairs. Then my worst nightmare comes true. He’s on the phone and tells them Baby Luke’s lips are blue.
I look down and he’s right. His lips are dark blue. He’s still not moving. My heart begins to sink.
Please be ok.
For a moment, I didn’t know if my child was alive. It was probably only a few seconds, but it felt like a lifetime. I didn’t think he was breathing.
After what felt like an eternity, his body relaxed. His lips turned pink and he started crying. Just then the EMTs and a Police Officer walked in my front door.
Fast-Forward Three Weeks And One MORE Seizure Later
At this point, Baby Luke has had four seizures. The neurologist and the ER doctors tell us the same thing. It’s normal. The seizures aren’t hurting his brain. It’s a brain misfire that happens when he spikes a fever. There’s nothing you can do to prevent them, not even fever medication.
Baby Luke woke up with a low-grade fever. Due to his previous seizures, a fever for him is 99 degrees. I immediately gave him meds and scheduled a pediatrician appointment. We go and they tell us it’s just a virus and to load him up on fluids.
As soon as the appointment is over, I run to the store for Pedialyte. As soon as I leave the store and turn into an intersection, I look back and see my baby. He’s seizing. I pull over immediately. I’m right in the middle of traffic, but it’s as good as I can do because I need to get my baby on his side so he doesn’t suffocate.
I grab him and walk over to the grass. I start talking to him and let him know I’m there. While I’m waiting out the seizure, three moms pull over and ask if they can help. They call 911 and an ambulance and a Police Officer (the same Officer that came to my house before) arrive. After the seizure, we move over to the ambulance.
After the seizure, we move over to the ambulance. They tell us we have to go to the ER because he still wasn’t acting like himself. I had to follow behind them because I had our only vehicle with all of my kid’s car seats.
I speed the entire way to the hospital, run inside, lose a shoe, and ask where my baby is. When they lead me to him, he’s naked. He had spiked another fever in the ambulance and went into another seizure. They’re trying to cool him down.
About an hour later, they try to put an IV in my baby. He starts crying. I look at him and my husband notices the look. He starts to seize again.
The room fills with doctors, nurses, and they put an oxygen mask on him. My baby.
I grab my husband’s shirt and he holds me as tight as he can. Our baby.
I hear a doctor mention intubating him and then they give him anti-seizure medication. His body finally starts to relax. I immediately go next to him and start rubbing his head. I looked at my baby and he looked so fragile. So little. So broken.
I lost it. I started sobbing. I’ve never felt so helpless in my life. That was our seventh seizure and each time I have to stand there, watch my baby, and do nothing. There’s nothing I can do to help him.
I’m his mom. I’m supposed to protect him. I’m supposed to fix it. I can’t.
There are a few reasons I wanted to share this with all of you. Part of me needed to write and cry it all out. It’s been such a hard year with Baby Luke. I hate hearing doctors tell us it’s normal. This doesn’t feel normal. It doesn’t feel normal to watch my baby convulse, see his lips turn blue, and pray it stops. It’s not normal.
The other reason I shared my story is to tell every parent out there, you can’t always fix it. You can’t always fix your baby’s problems. You can’t always protect them from things that could hurt or scare them. What you can do is be there.
I can’t prevent my baby’s seizures, but I can be there. I can hold his hand and tell him I’m right there. I can hug him, kiss him, and tell him how much I love him.
To be honest… This is where I am in this journey. I don’t know what I can do. The doctors say it’s normal, but it’s a nightmare. I’m trying to figure out what to do as I write this. It’s a horrible feeling not knowing.
The only comfort I have is knowing I can be there for my baby. I will always be there for him. It’s the most I can offer and it’s enough. He will always know how much I love him and I can take rest in that.