Our Epilepsy Journey

February 20, 2021 | ,

This picture pierces my heart. It’s one of my favorites, though, because I love how she’s looking up at my dad (her Lolo), and my mom (her Lola) is just radiating happiness holding her newest grandbaby. She had just turned 4 months old in this picture. If I were to create a timeline of Cece’s life so far, this picture would have a prominent spot because this is the last one I took of Cece pre-epilepsy. It would only be two short days after this picture was taken that Cece had her first seizure, although I didn’t even know it at the time.

It was a normal Saturday afternoon and Cece was just waking up from a nap. When I went to go pick her up, her eyes were kind of rolling to the back of her head and her tongue started flickering in and out. She wasn’t crying, so while it startled me because I had never seen that before (and she’s baby #5), I kind of just blew in her face and took her outside not thinking much of it (because she’s baby #5), and then it stopped. Thinking it was just some weird “new baby” movement, I took her back inside and she went back to sleep. 

An hour later, my sister and her family came over for dinner. Cece was just waking up again, so of course, my sister motioned for me to give Cece to her so she could hold her. She woke up and did the same strange movements...eye rolling back, tongue flickering. I remember my sister saying, “What is she doing?” And I very casually told her I wasn’t sure, but that she did the same thing just an hour before she came. And that’s where everything sped up. Very calmly, my sister (a nurse) told me to call my pediatrician because she thought Cece was having a seizure.

Within minutes, we packed her up in the car, sister in tow, and headed to the nearest children’s hospital. They say your mom instincts kick-in in times of crisis, but I can assure you mine did not. I was overwhelmed with fear, concern, worry...and highly annoyed at the people checking us in, asking so many questions, when all I wanted was for a doctor to see my baby. We didn’t have to wait long in the waiting room because when a nurse came out to check on her (given she was 4 months old with possible seizure activity), Cece had gone into a full blown seizure episode. Immediately, we were taken to the back and there must have been 10-12 medical professionals that quickly converged upon her, and all I could remember was seeing my 4-month old baby, somehow quickly stripped down to her diaper, and being lifted onto the table.

The next few minutes - though it felt like hours - was a blur. As they tried to stabilize her, my husband and I just stood there speechless and shocked, while my sister was doing her best to let me know what was going on without sending me into full hysterics. That seizure lasted for 10 long, agonizing minutes. That night, they did every possible test you could imagine - MRI, CAT scan, spinal tap, blood work - and every single one came back with nothing to conclude.

When we finally left the hospital a couple days later, we were hopeful that it might have just been a fluke seizure (it wasn’t). The days and weeks after that were no better. I thought that I was going to lose my baby girl that night, but then after we took her home, I was filled with a different kind of fear - I thought there was no possible way I could do this. I was not equipped and surely there was another mother that He could have given her to that could handle this challenge much better than me. What was He thinking?

I remember calling a friend of mine one night, desperate for some comfort and reassurance. She herself had just gone through a traumatic experience with her twins in utero, and I wanted to ask how she was able to get through each day, thinking perhaps she could give me some courage that I had very little to or none of at the time. She listened and cried with me as I spoke, and I remember towards the end of the conversation, she said something that will stay with me forever. She said that God CHOSE me to be her mother for a reason and because of that, I was already equipped for this journey. 

The months after that phone call didn’t get easier, but at least, I could find a little bit of footing in this new normal. It wasn’t that I gained superhuman courage in the process. What she did was point me back to God.

It wasn’t long after that when my family, alongside our dearest friends, brought Cece to a healing service at our parish. Our church is the birthplace of Life Teen and home to one of the most amazing murals of Saints and Angels I have ever seen. There, I remember standing, holding Cece in my arms looking at those Saints and begging for their intercession for my sweet Cece. It was at that moment the service started and “Oceans” began to play. And I just sobbed. Soon after, we were surrounded by our family, friends, and community as they laid hands on Cece and me, interceding for both us in our time of greatest need, and I’ve never felt the communion of Saints more alive than in that moment.

That song became me and Cece’s anthem.

A few days after the service, we found ourselves back in the hospital again. One morning, after my husband went home to check on our other kids, I was left alone in her room while she was under a 72-hour EEG to try and find answers, and I just broke down again. It had now been a couple of months into our journey and I was already weary. I didn’t know how much more my heart could take, watching my baby girl suffer and me not being able to do anything about it. It was the absolute lowest point in my life, and as I was crying, I was talking/screaming at God asking why. Why is this happening? Why won’t you heal her? I can’t do this. Where are you? And then I heard Him; a soft voice, yet so clear, “Keep going. I’m already where you’re going.”

Today, we still don’t have an official diagnosis and a reason for her epilepsy. We take things one day at a time because the journey ahead is unknown to us, which is just as well. We know that more testing needs to be done, but we also know that no test can change the way we love our sweet Cece. While her future may look uncertain, deep down we know that her future is already secure because God has made sure of that. And while I will never understand (at least on this side of heaven) why this is the cross we get to carry, in some ways I already know the answer. Heaven is our goal and it seems this is our path to get there.

hifriend@tulipsandgrace.com
with love from Gilbert, Arizona
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