My Hallelujah Song.

Today is one of those really bad days. You know, the kind of day where your heart hurts even when something wonderful happens? The kind of day that makes you want to cry about every little thing? The kind of day that makes you almost hate the things you love? Yeah, today has been that kind of day for me. Today has kind of stunk! It has been rough and my heart is hurting.

Today is the every once in a while day that we call "I hate Epilepsy day". It comes every couple of weeks or months and it doesn't stay long but while it's here, it hurts! It breaks our hearts and it makes us cry and basically, it just plain stinks, big time!!

I have cried more times then I can count today. Why? You may ask. Because, it stinks to have Epilepsy sometimes!

Now, please don't get the idea that I hate Epilepsy, even though everything I've said so far has pointed to that very thought. I LOVE having Epilepsy!! I love that the Lord gave this illness to me!! It is a gift and I am so grateful to God for it.

I know I just gave you some serious whiplash so, let me explain.

Epilepsy means for me that I can't:
  • Be by myself
  • Be tired and careless
  • Take a bath without someone outside the bathroom door listening for me
  • Stay up late or wake up early without a list of things I have to do to keep me safe
  • Go to sleepovers
  • Smell all the candles at Walmart
  • Go in Bath and Body Works with my friends
  • Go down waterslides
  • Be in the sun without massive amounts of sunscreen
  • Run and play games
  • Work out without serious caution
  • Look up at the stars
  • Watch fireworks
  • Go to the movie theater
  • Listen to loud music
  • Close my eyes
  • Ride in an elevator
  • Ride the escalator
I know that some of these things might seem silly to some, they seemed silly to me as I was typing them out, but when the ability to do them got snatched right out of my hands, it hurt and suddenly, they weren't so silly or insignificant anymore.

I have to:
  • Wake up two hours before I actually need to get up
  • Monitor my heart rate
  • Keep myself and others from frightening me
  • Stay away from bright or flashing lights or quickly cover my eyes or turn away, etc.
  • Have light or ease my way into darkness
  • Stay as calm as possible at all times
  • Keep my eyes closed until my brain is fully active and I am ready to get up
  • Get up and out of bed slowly and calmly
These are just the things I can think of and put into words right now. I have to live with these things everyday. I have to make a conscious effort to keep these things from happening, I have to remind myself not to do things and I have to look at people and tell them that I can't do something that they really want to enjoy with me. I have to ask people not to do certain things and I have to ask people for help all the time.

One of the hardest things for me is asking people to lay down their wants and desires and dreams to help me. It hurts them and it hurts me. It causes so much pain and heartache. My Epilepsy causes the people around me to miss out on things they so desperately want to do. It is so hard on all of us, but the kindness and willingness to serve shown by my village is amazing and truly a blessing to my heart!

Here is why I love Epilepsy and why I would never ask God to take this away from me.

Here are the two big reasons: 1. You. The person who is struggling with their own Epilepsy journey, your own health problems, whatever they may be. Maybe it has nothing to do with your health at all, maybe you are having family troubles or financial problems or maybe you have just lost a loved one and you need a reminder that you are not alone! I have been in all of these situations and so many others have as well. Maybe you need the reminder that God makes beauty from ashes and He is the great and powerful redeemer! I need that, too! All the time.

Sometimes I feel like no one understands what I am going through and then God gives me this wonderful reminder that yes, there are people who know what I am going through and there are people all over this world who have known so much worse. He is also faithful to remind me of the cross and how His perfect, beautiful Son, Jesus Christ took all of this on Himself at the cross, He knows!! Jesus knows exactly how we feel. I want to encourage you in that today.

I love this illness because God has used it to open up so many doors. God has helped me learn and grow through this. He has taught me things that I might not have learned otherwise. He has allowed me to talk to and encourage so many. He has given so many wonderful, undeserved gifts and I am grateful for each one, no matter how painful they come!

My Biggest reason: God. God, Jesus, Holy Spirit. They are my favorite reason! They, the wonderful, mighty, powerful, majestic, Holy, and righteous Trinity. God sent His beautiful Son to die for me so that I could live for Him. I am here on this earth, as are you, to give glory to God, to His Son, Jesus, and to Holy Spirit. That is the call, the duty, of us all.

This is part of my hallelujah song. This is just a fraction of my redemption story that God has been so gracious to give.

Today stunk. I cried and let my heart hurt. I didn't choose joy every moment of today. I wish that I had, I wish that I was a better example, but God has given grace and He is helping me and today I am trying to take it one step at a time.

I have been taught that it is progress not perfection and I hope that encourages you today. Know that you don't have to be perfect and you don't have to do everything right. God is already perfect and He already does everything right. So, though we should strive for perfection to glorify God and to bless His name, when we mess up remember that God is there to pick us up and help us on this journey and we aren't failures.

If you are struggling today, if you are hurting, for whatever reason, cry to Jesus. Be encouraged that God is the Author and Perfector and He is the Finisher.

When we hurt and when we have one of these nasty, ugly days, God is there and He cares so much for us, even when it doesn't seem like it.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with My righteous right hand." Isaiah 41:10

In Christ,


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    1. Bayley, This is beautiful! You have such an amazing, wise, sweet spirit! I cried while reading. You are in my prayers daily. I love your definitely give all the Glory to God! Keep writing! Love, Joy White❤️

    2. Thank you so much, Mrs. Joy!!!! You are such a blessing to my soul and I am so grateful to God for your example, prayers, and love!!!! You are such an inspiration to me! Thank you. In Christ, Bayley


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