Where to Start?

 A lot has happened since I last updated. I honestly don't even know where to begin. This is not going to be an exciting upbeat post about how amazing my life is. 

Honestly, I am not doing well at the moment. I may not feel well in my soul right now. My prayer is that it will be well with my soul. It will be eventually because I have God on my side. I have a good heavenly Father who fights for me, loves me, and who will give me the rest I need. I am weary and worn. The Lord knows this. I need rest. This is where I am struggling right now. Rest. What is rest? Jesus says " 28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.” Matthew 11:28-30 I know he says this. I know He will do what he says, and yet why am I struggling so much to go to Him and rest. I know what the Bible says, and yet something in me in this season is struggling to connect what my head knows to my heart. 


We are in a long season of suffering. I feel like we are like the Israelites in Exodus wondering the desert. Honestly, at this moment I feel like there is no end in sight for our family. It is one thing after another for us. I know that I am struggling spiritually so much because I am not spending as much time in God's word as I should. It does not help that we have not been to church in a long time due to so many sicknesses, seizures, death, and other circumstances. Not being in community with the body wears on you. 

It is also hard to talk to people about our life. People don't want to hear your rawness and how hard things are. Truly, people want to hear the "good" things in your life or want you to be generic. Yes, there is ONE thing that is our constant and IS GOOD in our life, which is Christ. That will NEVER change. Other than that, the reality of our life is that it IS hard. There are many aspects of our life that are hard, and seem to have no end in sight. We have ongoing trials that will likely never fully go away.  

Being 6 months into my diagnosis I have to be honest about what it is like for me. I am thankful my first medication has seemed to control my seizures well as long as I avoid my triggers. Although they are mostly controlled, I thought it would get easier, but it is not. Epilepsy is wearing on me. The biggest areas I am having a hard time with are not driving and the lack of sleep. It really has changed my whole life. It shows how much I depended on driving and honestly most adults do. Taylor has had to pick up so much of where I lack. He has to go to the grocery store now, or drive me there. Drive me to doctor appts, errands, etc. All the things I used to do. I have a couple dear friends who have continued to love us well and sometimes pick me up to do some of these things. I have one friend in particular who I truly love dearly and is such a gem. She takes the kids places for me so they are not stuck at home 24/7. She loves my kids so well and she has been a gift to them and to me. She encourages me in so many ways even just talking to her. She prays with me and just listens. Seeing her servant heart is beautiful and a reflection of Jesus. She is a gift from the Lord to me more than she will ever know. I am also very grateful for the friends who text me/call me/ and marco polo me often to see how things are going or let me know they are praying for us. It has been amazing to see how God has brought different people in our lives to love and serve us at different times. I can not express my thank you to all of those who have been there through this past year. 

The lack of sleep is such a big issue for me because the late evenings was much of mine and Taylor's time together. Our time to read our Bible together, pray together, talk and catch up, watch a movie or show, etc. Now "finding that time" is much more difficult. We have to really fight for our time. We know that if we stay up "late" which is past 9-10 PM there WILL be consequences. I will have seizures. Who knew we would have to weigh out the benefits of staying up late together vs me getting sleep? It is hard. We have to be really intentional with our time, which is not always a bad thing we just do not have as much time as we used to. We still have time together I just personally miss our late night talks that would last until midnight or later or when we had time to talk and then watch a movie rather now we have to chose one or the other. 

Our kids are currently sick and usually I would take the night shift since Taylor has to go into work or we tag team the night shift with sick kids. Now he loves me and serves me and gets up with each child while I sleep. He may not know it or see it, but I see so much of how Christ loves the church in how he loves me. He is still right by my side with my seizures. He is a reflection of what that means. I love him so much more that he will ever truly know.  

Sleep is always something I will have to make sure I get enough of, but I really hope to be at a place to safely drive again in near future. One good thing about having epilepsy has allowed me to educate more people about it. There truly is a lack of understanding and awareness of what epilepsy is. November is epilepsy awareness month. Please take the time to research it and learn about it. At the very least please learn what to do if someone is having a seizure for both generalized seizures and partial seizures.

                                     

                                   http://www.harbor-ucla.org/national-epilepsy-awareness-month/

Since my last update, my dad passed away. We traveled to Arizona. I do miss my daddy. Him and I had a special relationship when we lived in Arizona. This was before he was sick and remarried to my step mom. We used to spend so much time together. We went on many adventures in Flagstaff, Sedona, etc. We discovered new places, restaurants, had so many inside jokes, and laughed until our bellies hurt and we were crying. The reason we were in Arizona was hard, but the time with family was so good. Seeing all the cousins playing together was beautiful and such a gift. Our children did not want to leave. Laughing with my siblings, my mom and step dad, step mom, in laws, etc was needed. The time change was very hard for our family. The heat was a struggle. Josiah and I both struggled with our seizures with the heat. I especially struggled with the 3 hour time difference and the lack of sleep. I had A LOT of seizures while I was out there. That part aside our time was great. I honestly wish we would have had more time to spend with our family and see more people. Overall, our Arizona trip was bittersweet. 

Don't worry friends this post won't all be negative. Even in my lack of relying on the Lord as I should and relinquishing full control of every aspect of my life I have seen so many evidences of his goodness and undeserving grace on my life. I am so thankful to serve a relational God, and through my sin loves me so much. I have never yearned for the Lord to return as I do now in this season. There is so much death, destruction, sin, sickness, and the list goes on every where I look. I yearn for the Lord to return and make things new, whole, and the way he intended the world to be. Oh how I long to live in His glory and worshipping Him fully without any cares of the world to distract me from Him. I recently started reading through a book on learning how to lament called Dark Clouds Deep Mercy by Mark Vroegop. I relate so much to the Psalms of lament such as Psalms 42 or Psalms 77. Some other verses that are ministering to me right now in this season are these: 

The Lord is my strength and my shield;
    in him my heart trusts, and I am helped;
my heart exults,
    and with my song I give thanks to him.

Psalms 28:7 

Psalms 34 is another one I read often. 

I feel so so weak and weary right now. It is a good reminder to me that I am merely human. I don't have to "be strong" I have the Lord who is and will be my strength. Now I just need to learn to relinquish control and REST in the One who IS KING and ultimately has control. 

5 On behalf of this man I will boast, but on my own behalf I will not boast, except of my weaknesses— 6 though if I should wish to boast, I would not be a fool, for I would be speaking the truth; but I refrain from it, so that no one may think more of me than he sees in me or hears from me. 7 So to keep me from becoming conceited because of the surpassing greatness of the revelations,[a] a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. 8 Three times I pleaded with the Lord about this, that it should leave me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
2 corintians 12: 5-10


Even though we have begged and pleaded the Lord to take many of these trials away, he has said No. We have to trust Him, in his character and his sovereignty, that though we may not see it they are for our good and his glory. I know He is sanctifying and growing us in certain areas, and even areas we are unaware of. Sanctification is like heart surgery. It is painful. It sucks. It is hard. My heart surgery seems to be lasting for years. Please continue to pray for our family through this season. Don't be afraid to reach out and ask how we are doing or to ask how you can pray. 

A few other things since my last update is that homeschooling is going well this year and both boys are flourishing beautifully. Eva is very interested in learning so I have incorporated some preschool stuff for her while she is excited about it. My boys were never this excited to learn at such a young age so its fun to see! It reminds me of when I was a preschool teacher over 10 years ago. 

We also got puppy named Macey. She is a piebald miniature dachshund! She is full of so much sass. She is sweet, loveable, obnoxious, stubborn, and too smart for her own good. We love her dearly. It took Taylor and I awhile to warm up to the idea of getting a new dog after our last two past away a few years ago. After the children begged us for a while, we talked about it and decided that we would. We are so glad we did. Macey brings us so much laughter and is so much fun. 

Why Are You Cast Down, O My Soul?

To the choirmaster. A Maskil[a] of the Sons of Korah.

42 

As a deer pants for flowing streams,

    so pants my soul for you, O God.

2 

My soul thirsts for God,

    for the living God.

When shall I come and appear before God?[b]

3 

My tears have been my food

    day and night,

while they say to me all the day long,

    “Where is your God?”

4 

These things I remember,

    as I pour out my soul:

how I would go with the throng

    and lead them in procession to the house of God

with glad shouts and songs of praise,

    a multitude keeping festival.

5 

Why are you cast down, O my soul,

    and why are you in turmoil within me?

Hope in God; for I shall again praise him,

    my salvation[c] 6 and my God.

My soul is cast down within me;

    therefore I remember you

from the land of Jordan and of Hermon,

    from Mount Mizar.

7 

Deep calls to deep

    at the roar of your waterfalls;

all your breakers and your waves

    have gone over me.

8 

By day the Lord commands his steadfast love,

    and at night his song is with me,

    a prayer to the God of my life.

9 

I say to God, my rock:

    “Why have you forgotten me?

Why do I go mourning

    because of the oppression of the enemy?”

10 

As with a deadly wound in my bones,

    my adversaries taunt me,

while they say to me all the day long,

    “Where is your God?”

11 

Why are you cast down, O my soul,

    and why are you in turmoil within me?

Hope in God; for I shall again praise him,

    my salvation and my God.

Life with epilepsy update

Its been a while since I have posted an update. We have been learning to adjust to our new "normal." I am now at 1500 mg that I take daily for my medication. I have been on this dose for a couple months now. My seizures seem to be controlled most days. There are a couple times a month they flare up that is hormone related (catamenial seizures). Otherwise, they are controlled as long as I stay away from my triggers like lack of sleep and heat (those are my biggest triggers). This is the most normal I have felt in a long time. I feel like myself again, which I cannot express how grateful I am. Thank you Jesus!  I had blood work done and I am  in therapeutic range, which I am thankful for!

I will be honest there have been good and bad days emotionally for me. There are days when I sob as I realize my "normal" is different. It will likely be different for the rest of my life here on earth. Some days I just cry. Other days I am frustrated. Other days I am at peace. I am at peace until I neglect spending time with the Lord, or try to take control of these areas in my life I honestly have no control over.

This trial in our life has been so painful and hard, but forced me to get into God's word more, pray more, and rely on HIM more. Also, it has helped me to be humble and ask for help from others when I need it (which is so hard for me). Life is just so different. I never imagined this for myself. For our family. It is hard. I think right now the hardest for me is not being able to drive. The second is not being able to take the kids swimming. They are understanding and do not complain, but I hate that I can't take them without another adult with me. The fact they don't complain about it is a small glimpse of God's grace working in our lives. Another area that is hard for me is not being able to walk/exercise outside like I used to. I loved it.

                                             (Swimming as a family. Photo Cred: Taylor)
                                               
I am now cooking on days I feel well.  If I am having a rough seizure day, I pull out a freezer meal that we were given, use the crockpot, order pizza, etc. Whatever is easy. I have learned to improvise on those days and stay away from using the stove. I still don't really go alone in public. Since we are still fairly new to being mostly controlled we want to wait a couple more months before I go anywhere alone. I either have Taylor or a friend with me in public. For example, when we grocery shop Taylor takes the kids and walks around the store looking at toys, electronics etc while I do the food shopping. This way he is still close enough that I can text him for help if I start feeling an aura for my seizures. Sometimes we just do store pick up, but I like shopping. I cannot express enough how amazing my husband is. Taylor has loved and served me so well, and never once has made me feel bad about needing his help. I love him so incredibly much. This season has also grown some of my friendships, which I am so thankful for. Those of you who have been here for me, I want you to know how beyond thankful I am for you. You ladies are true gems, and I am so blessed to have you in my life! I love you ladies!

As my seizures have become less frequent we have been able to make a more sound decision about our children's education. There are a few things that helped us decide. Our plan to send the kids to private school fell through. At first we were hurt and angry. It brought us back to the drawing board. As time has gone on and my seizures are way less and "more controlled" we have had many discussions, revisited why we home school, prayed, and researched different curriculum that were a wiser choice for this season of our life. After much consideration and prayer we have decided to CONTINUE our homeschooling journey, which I am so excited about! Homeschooling is hard, but I truly love it. When we told our children we were still going to home school them they were so excited and relieved. If things become bad again with my seizures where I am not functional again we will re-evaluate this decision.

 Thank you to all who have prayed, served, and reached out to us in this season. We are forever grateful. Please continue to pray for us as we navigate through this season.

First few weeks alone

The first week was long and rough, but I survived. Taylor returned to the office a couple weeks ago, which means I was home alone to hold down the fort. I still averaged 2-3 seizures a day, but had increased my meds so I hoped I would see a decrease in activity.

With each day, I realized more and more my need for Jesus. I will be honest in saying that this was a rough week. I had to pray A LOT, listen to the Bible, and played a whole lot of worship music. I also listened to my current book, A shelter in the time of Storm by Paul David Tripp, which is a meditation on the Psalms. By Friday, I was in tears. This was not only a transition for me, but it was a transition for the kids too. They struggled with not having Daddy home. 

I learned the hardships of my restrictions even more this week. Taylor was driving home from work, which is a 10 minute drive, so I thought I would be safe to cook a grilled cheese for the kids for dinner. I began cooking it, was side tracked by one of the kids, and completely forgot about the grilled cheese. I smelled something burning, and had no idea why I was smelling that. I walked in the kitchen to find the grilled cheese smoking on the stove. I learned that even in 10 minutes it is not safe to cook on the stove without supervision. I learned that in 10 minutes or less a fire can happen. I am thankful the Lord kept us safe and nothing caught fire, but it was scary!

Week 2 being alone still came with some challenges, but it was a little easier in some ways. My new dose kicked in and I had a few days of one seizure a day, and a few days with NO seizures!! Thank you Lord! He said yes to our prayers!! Those few days were glorious! When I was having seizures every 2 hours I just wept. I told Taylor, " I don't feel like me anymore" it was like I was lost in my own body. It's so hard to explain. Now that my seizures have significantly decreased I feel like myself again! For the first time in MONTHS!! This in of itself is a huge gift. 

Anyway, I am learning to navigate through my restrictions more. I am learning that even though I cannot cook on the stove that I just need to utilize my crock pot more, and the oven by using the timer that shuts the oven off automatically. Not being able to drive or grocery shop is hard for me, but I had some wonderful friends who took me out this week. It was such a blessing to me because it was the first time in a long time I felt like I was an adult again. They listened to me, talked with me, we laughed, ate ice cream, drank coffee, and one of my friends took me grocery shopping! It felt great to grocery shop (as silly as it sounds), and it was a bonus to have a friend with me! 

I was able to get through the boys' schooling the past couple weeks, but not without challenges. I became frustrated and angry when they didn't do their school without complaining and giving me a hard time. I find that my fuse is much shorter with homeschool these days because I feel like I am a ticking time bomb, and have a limited amount of time to get things done before I start having seizures. Even with time being limited it does not excuse my sin. I had to ask the boys for forgiveness a couple times this week. We are the first glimpse of the Gospel that they see, and even though they are children we still need to seek their forgiveness when we sin against them.

With that said, with much prayer and thought we have decided to take a break from homeschooling for next school year. We are putting the boys in a private school. I have mixed feeling about it. I am sad because I really do enjoy homeschooling and I love certain aspects of it, but at the same time I am relieved. Pray for us as we transition the boys to a private school. Right now, they want to remain homeschooled, but I am hoping once they are there they will love it. I just can't sustain their education in my current state, and it would be unfair, selfish, and prideful to keep them home. This again is apart of the Lord working on my identity, and being humble by asking for help.

I also managed to get some small cleaning done. I did not get everything done that I wanted. I learning more and more I need to rely on Christ, and at the end of the day it doesn't matter if my house is spotless, or all my laundry is washed, dried, folded, and put away. What matters is that I am glorifying God and relying on him in what I am doing no matter how little or how big.

31 So, whether you eat or drink, or whatever you do, do all to the glory of God. 
1 Cor 10:31

Fast forward to this week. I had some unavoidable triggers this week, which vamped up my seizures again. Going from several days of no seizures to having several seizures a day was a major bummer. I struggled to function the last couple days. Taylor had to work from home most of the day yesterday as I struggled to even move from the couch. I have multiple complex partials yesterday, and a bunch of simple partial seizures meaning I am still aware, but nonetheless the make me feel very weird and awful. 

I have had several people ask about seizure triggers. 

There are tons of things that can trigger seizures, but here are some of the more common ones for people with epilepsy:

Specific time of day/night
Sleep deprivation
Fevers or illness
Flashing lights or patterns
Alcohol/drug use
Stress
Menstrual cycle or other hormonal changes
Not eating well/low blood sugar
Specific foods - excessive caffeine or other foods
Use of certain medications 
Heat
(Epilepsy.com) 

So far I am still learning what MY triggers are. The ones I know as of now are heat, sleep deprivation, and hormones. My oldest son's triggers are heat, lack of sleep, sickness, and certain flashing light patterns.

Please continue to pray for our family through this trial. Your prayers are so much appreciated. 

This is what epilepsy looks like.... for me.

Background story: I have had weird things/feelings/sensations my whole life. I have struggled with chronic headaches/migraines since I was about 5 years old. In December 2018 I had a minor surgical procedure under general anesthesia. Everything went well, and I was at home sleeping off the anesthesia. I woke up after a couple hours with the worst headache I have ever had in my entire life. There are no words to describe the amount of pain I had. No pain killers even touched my headache, but I just assumed it was a side effect of the anesthesia. Within a few days I started getting these weird "sensations."

My sensations started out with feeling goosebumps/tingles on my head. Then it progressed to having a tingling sensation that would run up and down the right side of my body. Within, a couple weeks I started having vision issues in my right eye and right sided jerking of my limbs. This continued to progress in frequency and were getting worse.  When I would have these episodes I would also feel "spacey and euphoric" and struggle to speak. I could barely find words, and would slur and stutter really bad. I started having issues with memory and moments of confusion. These episodes became so frequent that a friend encouraged me to go to the ER. My husband agreed this was a good idea. I was admitted immediately. The local hospital was pretty much useless and a LOT of mistakes were made, and my care was sub par. That is story for a different day.

We decided to seek a second opinion from a Neurologist in Indy. Both my Neuro and My GP believed I was having partial seizures. I had a 72 hour video EEG done inpatient a few weeks ago, and 48 hours into my EEG I received my diagnosis. I have Left Temporal Lobe Epilepsy, which is why all my symptoms are right sided and cause speech, reading, memory and writing difficulties. The doctor believes I am having Complex Partial Seizures also known as Focal Impaired - Awareness seizures. The doctor and nurses have said that potentially the anesthesia from December had something to do with my seizures, but there is no way to find out at this point. I will be having an MRI with contrast to check for scar tissue, brain abnormalities, etc so please be praying about this test.

I am so relieved and grateful to have an answer to all my weird symptoms. I am thankful to be able to start medications that has lessened the frequency of my seizures. I went from having them every 2 hours to having about 2-3 a day with my recent increase. I am also thankful I have an Aura (warning sign) before my seizures come so that I can get to a safe place. An Aura for seizures are also known as Simple Partial Seizure or Focal Aware Seizure. I am thankful my seizures have decreased, but I am so ready to not be having these daily. Sometimes I wonder if my "migraines" were really migraines or if they were seizures or linked to seizures all along. Since my seizures started I have not had any migraines. Migraine medicines never worked for me in the past. The only relief I had from my headaches was when I was on seizure meds that were also used to treat migraines. The only time I get headaches now is after my seizure when I am post-itical. I will never truly know, but it does make me wonder.


With that said, what many people don't understand about epilepsy is that seizures look different for everyone. It is not always the Grand Mal (tonic clonic) or Petit mal (absence) seizure that people see or hear about. My seizures in particular I start to feel Euphoric/spacey (its hard to describe), my speech is slurred and I stutter. Then my head turns to the right, my eyes move rapidly and flutter some, my right arm jerks, and I am unable to respond. The seizure lasts about 1.5-2 minutes. 

My oldest son who has seizures has a blank stare, and drools. When he comes out of it he talks in slow motion, can't read or write, has lack of appetite, and a bad headache. His seizures are less than 30 seconds and are easy to miss.

We both have epilepsy, but our seizures present differently.

People also don't realize how hard it is to become "seizure free" and many people think the day you take a pill your seizures go away. I wish it was that easy! The process to get to a therapeutic dose is SLOW. Really slow. You have to go up on AEDs (anti-epileptic drugs) slow because of side effects (some can be fatal). There are also some people who have epilepsy where medication doesn't work. They need a VNS or lobectomy where the part of the brain causing the seizures is removed. Some people never become seizure free. Everyone is different. 

Being 4 years into the epilepsy journey with our oldest child I often hear, "Wow, he has seizures but he looks and acts so normal." Well, epilepsy is an invisible illness. People (unless they have other health/physical conditions) look "normal." I look normal and healthy until I have a seizure. When I have a seizure I look and feel terrible, and it takes me about 20-30 minutes after to bounce back.  

                                           Photo Credit: Courtney Venable Photography

People also don't realize it can change your whole life. It has for me. My whole life has been turned upside down. I am basically like a child again with what I am allowed to do. My independence went out the window. The things most adults take for granted I am not allowed to do right now, and this is hard. I have cried a lot and have really had to press into the Lord through this.

My seizure restrictions/precautions right now are as follows:

-No driving until 6 months SEIZURE FREE
- No swimming or baths without supervision
-No cooking on stove without supervision
- No open flames (grill, bond fire, etc)
-No being left alone in public
-No being at high elevations

Other things people don't think about is you have to be mindful about things you are doing that could potentially pose a risk like using hair styling tools that are hot,using knives to cut food, etc.

God has shown me how much I relied on MY independence. He has also revealed to  me how stubborn I am. I am dependent on myself where as I should be dependent on the Lord. God has also revealed to me my identity issues. My identity is NOT in me being a good wife, mother, homeschool mom, homemaker, etc. My identity is NOT epilepsy. My identity is IN HIM. Goodness, this is a hard concept to grasp. I have cried a lot. I am the worst homemaker ever right now. Struggling to cook, clean, homeschool, care for our kids etc... But that does not define me. That is not my identity. And I cannot do it alone. I NEED JESUS. I am a daughter of the one true King and apart from him I can do nothing.

5 I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.

 God has used this trial to humble me and allow my husband to serve me. He has grown my husband so much as a spiritual leader in our house, a husband, and a daddy. Witnessing this has been a true gift. His load is heavy right now. He is/was by me through my seizures, prays over me while I am seizing, reads the Bible with our children and leads biblical discussion, homeschools our children on days I can't, cooks, cleans, cares for the kids, drives me to my appointments, grocery shops, and on top of it all still continues to work from home to provide for our family. Pray for him and that he will endure this trial and continue to press into the Lord. 

 I have had to be humbled so much and have had to allow our church, friends, family, and Taylor's work serve us. To see the amount of love poured out on our us by our family, friends, church body, and Taylor's work has been just a small glimpse of God's grace and goodness. God has used both believers and non -believers to love us and this has been incredible to see. I pray that God uses our trials to lead people to him. We have had family fly out from AZ to love on us, people sit at my bedside in the hospital, visit us, pray for us and with us, watch our children, clean our house, provide meals, provide gift cards for meals, drive me places when our kids were sick and Taylor had to be home with them, text/call, send cards, allow Taylor to work from home, and the list goes on. We are so overwhelmed by how much all these people have loved our family through this. We are thankful beyond words, and can never repay them. Thank You just does not feel like enough. 

My sister, Kursty, took the photo below. I just came out of a seizure in this photo. I look awful in it, but I wanted to show my husband's servant heart. He knelt down beside me from start to finish of my seizures. My husband was by my side with every seizure. One of the most comforting things for me when I come out of my seizures is seeing his face. He truly is living out our wedding vows in sickness and in health. He prays, he comforts me, and has loved and is continuing to love me so well through this. I cannot express how much I love this man. Seeing how God is growing him in this season and how much he has loved/served me through this trial has made my love for him grow 10 fold, which I didn't even know was possible. 

My husband will be going back to work this week after working from home the last couple months because my seizures were so frequent. Pray for us as we start to get some "normalcy" back in our lives. Pray for him as he returns to work. Pray for me as I will be alone with the children again. Please continue to just pray for our family through this tough season.