Scariness Over Selfishness

Surgery. 

Not a fun word. No matter what kind, it is scary. Surgery on your child? Well, that just makes it a million times worse. Surgery. Not just any kind, BRAIN surgery! I still can’t believe it as I type it. My child. My sweet, perfect, vibrant, resilient, amazing, smart as a whip child is a candidate for brain surgery. 

Why? 

Well, most of you know by now Ellie Mae was diagnosed with Complex Partial Epilepsy when she was 5 months old. She is now three years old and thriving! She is developmentally normal, so smart, talking, potty trained, and all the things. There is just one abnormality: she has seizures. 

These started when she was born, I’m pretty sure (even though I had no idea at the time)! She has been a champ with multiple hospital stays, EEGs, EKGs, Video monitoring, medicine changes, countless lab visits for blood work, and more. 

It’s been a long road and, oddly enough, I feel as if I see a light at the end. This week, we had a video conference with (who will be) Ellie’s Nuero surgeon. He walked us through all the details, percentages, statistics, and overall stay of what this surgery will entail. 

It’s a lot. I’m not going to lie. We have been very overwhelmed after speaking with them knowing this is an elective operation. There is more pressure on us than ever. 

Should she have this surgery? Should she have more that will inevitably come? Should we try to completely heal her with a 60-70% chance of no seizures ever again? Should we be scared and lean on each other and friends to deal with this moment in our lives? Or, should we be selfish and let her continue to live her life the way she is just because we are scared? 

She may not ever be able to drive. She may not ever be able to swim without us right next to her. She may be on medicine for the rest of her life, but her seizures could stop or be drastically reduced. 

There are so many things that come into play. I joined a Facebook group for parents who support other parents whose child is having some kind of epilepsy surgery. I posted about Ellie and introduced us to the page. The comments were flooded by parents who have success story after success story. It was truly amazing to see the stories of people all over the nation who deal with the same things we do daily. Epilepsy is a very ostracizing ordeal (or, at least feels that way most days). 

One precious parent said it best. She said, “Fear the seizures, not the surgery”. I think that’s going to be my motto from here on out. I will not fear the future. I know God has a plan and is holding our hands. I will not fear for Ellie. She is perfect in every way. I will not fear of making wrong choices. I know what is best for my daughter. I’ll take scariness over selfishness any day! ❤️