I hate speaking about this. I’ve tried to suppress it because it takes me back to a place of trauma. But, if I speak about it, more people will learn about it and maybe then it will help others that may deal with the same thing and are searching for answers.

My 4 year old Ryker was born on September 22, 2015. I had the easiest pregnancy and delivery with him. After my pregnancy with my daughter, Harmony, I had no idea that pregnancies could be that easy. I think that was God being easy on me because of what was about to come. With Harmony, I was sick for 6 straight months. Vomiting daily. And I was living in Dallas, TX at the time. Away from all my family and friends. It was AWFUL. I was sick one time with Ryker, and that was after I had to chug that drink loaded with sugar for the diabetes test at the doctor. All mothers know what I’m talking about.

When he arrived, he had the most perfect little round head. The prettiest little pink, full lips. Is it weird to think your baby has a perfectly, round little head? Lol, I’m not sure, but he did and it’s one of the first things I noticed. The next few days after he was born was a blur of baby cuddles, colic, and late night feedings. On day 4 after he was born, my whole world completely came crashing down…

I was holding Ryker and he was starting to fall asleep. His head turned to the side and he starting seizing. It was so subtle that I questioned myself and wondered if I was imagining things. It lasted maybe 30 seconds and he let out the worst shriek of a cry that made my stomach turn in knots. I yelled for Ryan. “I think Ryker just had a seizure?!” He ran downstairs. “Maybe I’m wrong but it’s what it looked like for sure.” So we loaded him up and went to the Emergency room. The doctor saw him and then told me, ‘Babies do weird things, it’s just acid reflux.’ I knew that was wrong. I knew within my gut it wasn’t acid reflux. But, I wanted to believe it was nothing. I convinced myself that doctors knew more than me and we walked out.

The next day rolled around and I was snuggling and kissing on Ryker as he was just waking up from a nap. The next seizure came, and it was not subtle. It was a full body, violent seizure on a tiny baby. I will never be able to get these images out of my head. I immediately went in to panic mode and started screaming. We rushed to the hospital. They saw the fear in my eyes and on my face and immediately took Ryker by ambulance to the children’s hospital in Vanderbilt. They performed so many tests on my tiny little boy. Blood work, MRI, EEG, spinal tap. He had it all done. And every single thing came back normal.

Not a single neurologist/doctor could tell me why my son was having seizures. So they started to believe he wasn’t even having seizures that I was just imagining things. Insert big eye roll here. So they hooked him up to a monitor to try to catch a seizure on camera. 2 am rolled around and I had just fallen asleep. I woke up to the same spine chilling, painful shriek that Ryker let out when he had a seizure before. I knew he had another one. I called the doctor in and they watched the video recording. It was finally confirmed that he did in fact have a seizure. Imagine that. A mother knows what is going on with her child. Never let a doctor silence you if you know something is wrong.

But we still had zero answers..

We stayed in the hospital for a few days and they gave Ryker a medication that stopped the seizures in their tracks. They chalked it up to him just having epilepsy, but I was NOT convinced.

3 months seizure free. I never slept. I watched Ryker constantly. Worrying. Sick. Then the next seizure came. At 4 am. I was watching him and saw his body twitching. I turned him over and he was blue. I immediately screamed and cried. I screamed at God. “WHY are you letting this happen to my baby?! Take it from him and put it on me!” I was so angry and so sad. Just writing this has my tears flowing. We immediately loaded him up and decided to go to kosairs in Louisville this time. My son had seizure after seizure on the drive there. He ended up having a total of 13 seizures that day. The doctors and nurses rushed in working on my son, like he was dying in front of my eyes. The seizures could not be controlled. I could not BREATHE. I couldn’t eat. I was dying. I couldn’t take a shower. I would not leave his side. I slept in the little crib with him.

The doctors would come in and try to talk to me and I remember I couldn’t even form a complete sentence from the lack of sleep. I couldn’t form a thought in my mind. I was hallucinating from the complete and total exhaustion. It is so true that we, as mothers, feel our child’s pain, maybe even more than they do.

We spent our Christmas and New Year’s Eve in the hospital that year. We’ve never been out of town for NYE and always wanted to go somewhere, but this wasn’t what I had in mind at all. It was a nightmare. Ryan and I slept on little couches together. I cried to him. He held me, telling me it was all okay, but I know he was just as scared as I was. I thought, Is this going to be our life forever? Living in constant worry? Never sleeping. Never leaving his side?

This is when I started reading. Researching. Hours upon hours I never stopped trying to find an answer. And then one day, I found one. I immediately told the doctors what I had found. They ran a genetics blood test and we got our answer. KCNQ2 mutation, benign familial neonatal seizures. A genetic mutation in the brain that causes the neurological wiring to go haywire for the first few months of life. I was ecstatic to have an answer. And even more ecstatic to learn it’s BENIGN and that the seizures stop after a few months of age and the child develops normally.

I could finally breathe. All my prayers were answered. My son was safe.

Ryker was on a seizure medication for two years and was finally weaned off of it. He is 4 now and hasn’t had a seizure since he was 3 months old. Thank you God.

In conclusion, this was by far the toughest time of my life. The silver lining was that it made me stronger than I ever knew I could be. It brought Ryan and I closer than we’d ever been before. He was and still is my rock. He held me up when I felt like I could not go on another day. But we made it through and learned to not take a single second in life for granted.