2 years, 2 days

So.....here I am. 2 years and 2ish days into this "Epilepsy Mom" life. Here I am at my limit. Here I am feeling like life is just going in circles. The last four months have been a huge struggle for me. It started with Abby being referred to a neuropsychologist to have her evaluated for a whole bunch of maybes, and escalated when I got some paperwork from her neurologists office telling us that what we thought was true, was not. Even in my very rattled, very frustrated, very very tired brain, I know that the results we read do not change a single thing. The fact that her first EEG was actually abnormal instead of normal doesn't change the fact that she has epilepsy. It doesn't change the fact that she has to take medication every day. It doesn't change the fact that we have doctors appointments and tests and schedules to keep up with. It actually changes nothing in our every day life. But it did change me. It changed how I read the tons and tons of things I read all the time about Epilepsy and the types of seizures she has. It changed my hope of her outgrowing them into planning for a future where she may not. It changed my doubts into truth. And that truth scares me to death. It changed the joy I had for each day, week, month she is Seizure free into a waiting period of "when will she have her next one." 

I know. I know. Worry does nothing for us except rob us of our joy. Fear is not from God. Obsessing over what I cannot change won't change it. But here I am. Stuck in a circle of doctors, tests, maybes, disappointment, and then start again. The circles are exhausting. The mood swings are exhausting. The waiting is exhausting. The maybes are exhausting. 

But in the middle of my struggle, and the circles, and the disappointment, and the new doctors, there is my God. My Heavenly Father. The lifter of my Head. Every time I'm at the end of me, He's there. Whether it's in a friends text, or a parents prayer, or a husbands hug.

Last night a dear precious friend shared a devotional with me that she gets in her email every day. This one was about Joshua and Jericho. About walking in circles and thinking it's never going to end. Asking God to move just ONE brick for you so that just for today you see his hand moving in your walking. So that the (what feels like) endless circles around a giant intimidating wall feels worth it. That's what I've been doing. Over and over again. Just give us ONE answer. Just give us one brick to hold onto. 

But as I was reading that tears just filled my eyes. I have been praying for the wrong things. Not that it is in anyway wrong to pray for an answer. To have some kind of relief from the crazy circles. I don't at all believe that's true. God says to bring all of our requests to Him. But He doesn't say to bring all your requests with worry. He doesn't say to bring all your requests with anger, or fear, or annoyance. 

It says this: "Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7

With Thanksgiving. 

With. thanksgiving.

I'm supposed to come to Him with my requests with thanksgiving! Really?! A thankful heart?! With thankfulness for All He's done and all He will do, no matter how much it is, or isn't, "my way." Nope. For the last 4 months I haven't done that. For the last 4 months my requests have been more like demands. Or bargaining tools. Not thankful. Not even a little. 

So tonight, as I read about Joshua and that wall, I'm going to soak in it. In the 6 days before the walls crumbled. The 6 days that those people quietly marched. Not always believing tomorrow would bring victory. Probably grumbling that this was the dumbest thing they'd ever done. I want to march with a thankful heart. One that knows, even if I don't get to see the crumbling of walls I WANT to crumble, God will and does and has crumbled plenty of the walls in my life in His perfect time. And His perfect way. My job is to ask, trusting in His perfect love, and rest in that. 

These next few tests and results are hard ones. But my God does hard. And He does it perfectly. ❤️

His ways are not my ways...

Sometimes I look back at the last 9 years since Abby was born and I am just amazed by how much she has over come. We have struggled and fought and overcome things with her. She has struggled and fought and over come things on her own. And every single step of the way God was/is holding us up. She has more things to over come. She has a lot more battles to fight. Some we are ready for. Some I am scared to death to reach. Epilepsy is one we are in the middle of.
If you would have told me when I was 16 all the things my life would hold,  all the things I would have/get to watch my kids go through, I can promise you I would have done everything to stop what I could, change what I could, and hold on for what I couldn't. I'm glad I didn't know. I'm glad that God gives us what we can't handle. But that He prepares us and is there to let us fall on Him when it's just too much. Not because it's been a super fun ride. Not because I want to repeat it. But because through it I've learned so much about the character of God. I've learned that though His ways aren't my ways, His ways are good. I've learned that the "Footprints"  poem is more than just a poem. I've learned (and relearned over and over and over again) that when my faith is small His grace is sufficient. And trust me. My faith is definitely not even close to being as big as a mustard seed very often.
I have always heard about seizures and epilepsy. I have family members with it. Friends that have kids with it. Some very severe. Some that outgrew it. Some in between. And while I never wanted to imagine what a seizure looked like in my own child, I never thought past the seizure part. In my head a seizure looked like what they look like in movies. And I couldn't imagine watching that, or waiting for that to happen. Or knowing that it was going to happen several times a day. But, I just never realized that it's not just a seizure.
Epilepsy is making sure the meds are taken every day.
Epilepsy is watching your child sleep because seizures during sleep are terrifying.
Epilepsy is wondering if today's mood swings is from being tired, hormones, or a seizure that you somehow missed while watching your child sleep.
Epilepsy is having to tell everyone you are around a lot what to watch for.
Epilepsy is wondering how long these meds will work.
Epilepsy is wondering how the meds will effect other parts of the body as it treats the brain.
Epilepsy is watching the little sister be worried about the bigger sister and always wanting to be her biggest cheerleader.
Epilepsy is watching your husbands heart break a little more each time.
Epilepsy is a LOT of things. But it's definitely not just seizures.
As we walk through this journey, and have a bunch of side trails that keep us going in circles, I am overwhelmed a lot. I feel like I'm drowning a lot. I feel like I can't hear one more diagnosis, or symptom,  or issue that needs to be addressed. And every single time, God shows me that even if I can't, He can. He loves her so much more than we do. He knows what is ahead for her. He knows what I can't know.
At church on Sunday the sermon was about how to leave a church well. I know what you're thinking. What does leaving a church have to do with epilepsy!?  It doesn't really. But I was thinking, sometimes in life we have to leave things. Churches, schools, jobs, houses, families. The circumstances all vary. There can be so many reasons why we need to leave and move on from something. For us,  right now, we have left behind everything that was "normal"  for us. It started even before the seizures did. We have left behind our old,  easy,  everyday normal, and have entered a new,  scary,  hard journey. Did I leave the normal well?  Absolutely not. But can I do better next time? Can I choose to live our new normal with joy? Absolutely yes. I want to leave things well. And start things well. I want our story to lift others up. I want it to be a story full of hope, grace, and joy. I want to teach our kids that life doesn't always go the way we planned. And it's OK to be disappointed, and struggle. It's ok to cry and have sleepless nights. It's ok to ask why. But we won't live there. We will run to our heavenly father, and let Him do with what this crazy life throws at us for our good and for His glory. And when we fail, His mercies are new every morning.

If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up."
DAN 3:17‭-‬18

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.
LAM 3:22‭-‬23

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord . For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
ISA 55:8‭-‬9