Everyone keeps telling me how strong I am. But I don’t feel strong. I feel weak and tired. I feel overwhelmed and unsure. I have no idea how to manage my life as it currently stands.
I’m well aware it will all fall into place. This isn’t my first time dealing with diagnoses and doubts. I have two daughters with Epilepsy and now it’s possible that my son has it too. I know from my life with my daughters that this is only a season and before long it will be routine and balanced again, as much as it can be when you live daily with Epilepsy.
This is normal for us. The ups and downs. The shifts and swings in life. It’s our daily normal.
My girls have never had a “normal” life. All they’ve known is Epilepsy. Winston, my oldest, briefly had normalcy. I cherish those days and I miss them greatly. I realize now I had hoped for the same with Jackson because surely my boys wouldn’t inherit this dreadful monster. I mourn the loss of that “normalcy”.
I remember being naive when Laycie was born. I remember thinking “ok I have my daughter with “E”. Laycie can’t have it too.” I remember enjoying those days with her thinking this monster would never rear it’s god-awful head. But then it did and here we are fighting daily.
I guess I thought the same with Jackson, though I wasn’t quite as naive this time. I have watched for it in him for months. As we passed the four month mark, I breathed a little easier. I let my guard down, even when I knew better.
When I got the call the other night, I just remember thinking “my heart knew it was coming” and “not my baby too”. But my instincts, my Momma heart, my sixth sense have all screamed at me to “be aware” for months.
Yesterday was Jackson’s neurology appointment. The doctor went through the usual questions. We answered them as best we could. He wonders if there is a possibility of Apnea. I tell him, “I don’t know”.
He asks me, “what would you like to do?” Well, doc, I’d like to run like hell and hide my baby. I’d like to have my baby back, normal and pretend this never happened. I’d love to pretend it’s all a dream or there is another cause. Previous history, strong family roots, gut instinct all tell me differently.
This nightmare will not just “go away”. Its here and it’s big as night and day. I chose to hold off on medicating Jackson. I chose to agree to have an EKG for him to check for Apnea and an EEG to check for seizure activity. I do not want medicines to prevent that possible activity from showing up, even though we know it may not anyways. It doesn’t always show for me or my girls when have had EEG testing in the past. I do want the chance to find out.
I’m at war with praying right now. I pray he never has another seizure episode and at the same time, I pray it would just happen and get it over with. Then I’d know what’s wrong with my baby and I wouldn’t sit in fear of him stopping breathing never to regain consciousness again. I’d know. We’d be able to treat him. And life would move forward as “normal” as we could get.
Jackson is back to normal for him. He’s smiling and cute as a button. He’s trying to crawl, learning new words every day and working hard with his sign language. It’s as if nothing ever happened which makes me feel even more like it was a dream even though I know it wasn’t.
I feel so weak and tired from all of this and I know that’s ok! I don’t have to be strong but I have to get through it. My strength comes from God, from Life, from my children. I see them daily and know I must face the days ahead for them, even when I want to hide from it all. Hiding won’t get a diagnoses or treatment for my son.
This is life. This is the raw emotion of a Momma who is fighting every day to provide a normal life for her children who didn’t ask to battle a disorder called Epilepsy that generations have carried and passed on. This is our daily life and our “normal” and I chose to be blessed by it even when I’m at my weakest.