Walking With Grace

My personal story begs the question. After 14 months of (mostly) forward progress, we find ourselves taking a whole lot of disappointing steps backward. I’ve had 40 seizures in just the past two weeks, and all of them were triggered by lights in my own apartment. But today’s post is not really about me. It’s about a whole lot of other stories that are just as raw and just as real.

I’m not sure if the accident has helped more broken people open up to us, or if it simply opened our eyes to the suffering we used to pass by without in-depth consideration. We know several people with epilepsy or who’ve had strokes. There are sick children and sick grown ups. Some of them die. There are drugs. There are lost jobs. None of the sufferers – or their families – can be what they once were. Broken people are scary to approach if you’ve never been broken yourself, and I don’t begin to know how some of these losses feel since each broken person is different.  Nevertheless,  I hope I can talk with them and pray for them better since I do understand pain, frustration, and confusion a whole lot more than before. Stepping away from our personal circle, though, there are greater national and global tragedies that not only wreck lives but eliminate them, too. So, what do we do with ourselves? And what do we do with God?

Let’s talk about the God question first. With all the messed up people and places in this world, how can anyone possibly call God kind? Let’s be curious together…I know I need that answer too.

Since our question concerns God, maybe He should speak for Himself first.

“For rarely will someone die for a just person – though for a good person perhaps someone might even dare to die. But God proves His own love for us in that while we were still sinners, Christ died for us.” ~ Romans 5:7-8

We broke God’s world by choosing bad things over His good way. I know I’ve done things I’m not proud of. Instead of holding me to what I chose, God broke Himself for me so He wouldn’t have to leave me broken forever. Why would He chose to break Himself? I don’t think I’ve ever chosen brokenness over wholeness.

“So that in the coming ages He might display the immeasurable riches through His kindness to us in Christ Jesus.” ~ Ephesians 2:7

We can rely on His brokenness now, so that we will be able to experience the richness of His wholeness when He makes all things right. I know I often wish for a “fast-forward” button to the day when God returns to His earth and brings healing to creation – and to all who trusted Him in the meantime…BUT…

“God, Your faithful love is so valuable that people take refuge in the shadow of your wings.” ~ Psalm 36:7

We would have no idea of how faithful and valuable God really is if we never knew loss in some capacity.  We have souls that live forever, but our physical conditions are only temporary. Our job is to cling to eternity, and to the hope that we will enjoy God most fully at the end of our earthly life. Until then, we have the beautiful (albeit sometimes painful) opportunity to know God as a faithful refuge.

If we look beyond the temporary, God is indeed kind. Trusting that is what we do with ourselves.

It was a dark and stormy night. Well, actually it wasn’t. It was a peaceful Sunday night. Earlier that day I’d experienced 7 back-to-back seizures, but surprisingly, that is only incidental to our story. However, it does explain why Ivan and I were watching TV in our living area. Both of us were exhausted. Anyway, right in the middle of an episode from The Office, we were startled by 7 ear-splitting shots outside. We stared at each other in disbelief. Both of us have gone shooting before, and I’d spent 8 years in Wisconsin (aka deer hunting central), so it wasn’t hard to identify the sound: gunfire. 8 more rounds rang out only a few seconds later. “Get to the bathroom!” I ordered. (Side note, I’d received “active shooter” training at the school I used to work at. I’d hoped it would never prove useful. Anyway, that explains why I took the lead over Ivan in this situation.) Ideally, we would have run. It’s always better to run away from gunfire than hide. Shooters look for people hiding first. However, since I can’t run hiding was the best alternative. The bathroom made sense because it was the most bulletproof area. At this point we didn’t know if this was a random shooter/terrorist situation, or some sort of gang hit. There had been silence before and after, so we knew it wasn’t a domestic dispute.

Once installed in the bathroom, we called 911 and put our phones on “silent no vibrate”. This seems like a random detail, but it allows you to communicate with outside help without tipping the shooter off if they get close to your hiding spot. We agreed if we heard any more shots – or even footsteps – we’d turn the bathroom light off, jump behind the shower curtain, and lay down in the tub. Tubs are fairly bullet proof, too. I was really hoping the gunman was in the shopping center across the street, but it was impossible to know. The gun had been extremely loud, so if he was over there he had something a lot bigger than a handgun. Since there were no more shots, he’d either run away completely or was looking for somewhere to hide. Our apartment complex has several stories and the hallways are like a maze, so it would be a decent place to evade officers.  We couldn’t assume he wasn’t inside. However, at least the silence made it more likely he’d had a target and wasn’t out to kill at random. We heard sirens only a couple of minutes later, signaling the arrival of law and order.

The police didn’t fire either, and we decided after a while that either they were still searching for the gunman or that he had fled the area completely. After another long while, we crawled toward the bedroom and Ivan peeked out between a crack in the window blinds. A police chief and a group of officers were standing right outside our window gesturing. On the ground a few yards away, surrounded by orange cones, lay something that looked like a garment. After a few minutes of gesturing, they turned to our emergency exit (right next to our unit), and burst inside. That was not reassuring in the least. Was the shooter really that close to us?? Finally the running footsteps slowed to a walk, and we breathed a sigh of (almost) relief. Maybe we were okay after all. Ivan began to pray out-loud but we were cut short by a sharp knock on our door. There was an officer outside to question us. I couldn’t figure out why he asked us so many questions. How were we supposed to know what had happened? Later, when we found out the homicide had taken place literally outside our window, it made more sense. The officer couldn’t give us any more specifics about what had happened, but at least we knew we were safe now. He also mentioned that he hadn’t been over to our complex in ages since we lived in such a safe area. This would have comforting except for what had just happened in spite of the “safe” location.

All the dramatic cars and tape cleared out the next day, and our street has been quiet ever since. Two detectives came back on Thursday to question me while Ivan was at work. They seemed disappointed that we hadn’t run to the window to look out when we’d heard the gunfire. Seriously, I hope no one in their right minds would ever do that – even if it made the detectives’ job easier afterwards.

So, some things we’re giving thanks for this week:

1. Apparently gun shots do not trigger seizures, at least for me
2. I actually had been trained in how to respond safely to a gun situation
3. God protected us from stray bullets
4. This was not a terrorist incident

If any of y’all are curious and want to read the official article on what happened, I’ve included it here

Lord-willing, this is the ONLY time someone will ever get shot to death outside our bedroom window!!!

P.S. Unrelated to this story, Ivan wanted me to let you know that we had another ER trip this Wednesday. I had 20 seizures back-to-back in about an hour and a half. Thankfully my dad got me to the hospital fast enough, but we would really love for that not to happen again. Still working to find the best medication combo!

Hi everyone! Sorry for the Little Mermaid reference, but it’s very apropos. Going out is officially a rare, award-winning production. We’ve alluded to my homebound status in a few posts, and yesterday morning was an excellent example of just how much work goes into staying safe for a brief outing. I hope this step-by-step outline will prove both insightful and entertaining. 😉

Goal of mission: make it to and from church without having a seizure. I haven’t been able to attend church since early November.

1. Noise-canceling earplugs, sunglasses, and travel wheelchair must all be in place BEFORE venturing out the door.
2. Ivan brings the car to the complex’s loading zone so I don’t have to go in the parking garage (one time a combination of back-up lights and beeping triggered six back-to-back seizures plus an ER outing).
3. We drive to church. I keep my “accessories” in place and look at my feet the whole time. It’s a foggy day, and sometimes headlights can trigger a seizure even through my protective sunglasses.
4. WE MAKE IT TO CHURCH SEIZURE-FREE! I stay in the travel chair and keep my earplugs in and eyes on the floor (the powerpoint has triggered seizures before, too). We listen to most of the sermon (~25 min), but skip the music part and leave early to avoid noise and light triggers.
5. Repeat the driving drill to get home.
6. Ivan leaves the car in the loading zone to get me safely indoors, then parks in the garage.
7. Once inside I can FINALLY ditch my earplugs and sunglasses and give thanks for a safe outing,

It’s ironic that although my brain injury is healing steadily, epilepsy introduces a whole new set of hazards to venturing past my apartment door. We were all caught off guard by the rapid development of this new condition…and even more shocked at how sensitive I’ve become to triggers that are unavoidable in daily life. Because the seizure electricity comes from the stroke area of my brain, I lose the ability to walk for about 3 hours after a seizure. This makes the travel chair a necessary safeguard for rare times I do venture outside.  The earplugs  are a lifesaver and the sunglasses make a measurable difference, but there are some triggers that are even stronger than they are. Although home is not 100% trigger-free, it’s a whole lot safer than going out. HOWEVER…as bleak as this all sounds, this post is not intended to be a “downer.” My goal is to give you all a micro peak  into the everyday side of life right now since most of our posts target macro developments. The good news is we are working actively with doctors to find a medication that is a good fit for my condition, and everyone is optimistic we can get there.  It would be great to have a fast-forward button on life and skip ahead to the nice part where I function normally again. But God gave us waiting periods for a reason, and we have to trust that. In addition to practicing patience we can find things to give thanks for – and laugh about – every day. “Laughter is the best medicine” is over-used because it’s true. I found the drama surrounding our church expedition yesterday morning quite funny, and I hope you can laugh with me about it too!

Hi everyone! I hope the rest of your holiday season was fantastic. 🙂 My own new year is off to a memorable and positive  start on the therapy front, too! Honestly I never really imagined being in any sort of therapy. Much less for one. entire. year. But that is what happened, and it happened in 2017. I was just figuring out how to move  around in a wheelchair on my own this time last January, and we devoted hours every day – at home plus during multiple Kaiser trips each week – to help me relearn the most basic skills of daily life. And now we get to the good part: My therapy journey is finally coming to an end! Last Monday I said goodbye to my physical therapist. Although my abilities aren’t 100% perfect, I’m blessed to have made it way farther than many stroke patients (not sure if enough people survive getting hit by a car to have comparisons on that front).  I look and walk totally normally to an untrained eye…just with some interesting scars on my legs. Such stellar progress does come with a long-term commitment: I was released with the understanding that I will continue spending around an hour each day doing my exercises at home in order to maintain the strength and flexibility necessary for normal activities. My legs still hurt occasionally and I’m prone to knee tendinitis, but overall I’m thrilled with my therapy end point given what we’ve been through.

On the left hand front, I’ve transitioned to occupational therapy as needed, which will probably look like a “check up” once a month. Here too, I’m still committed to maintaining my abilities through daily practice at home.  We now know my inability to feel that hand is permanent due to the location of the strokes in the brain (confirmed by 3 different neurologists). Nevertheless, I’ve had such gifted therapists that I can take care of myself, take care of our apartment, make simple dishes, type, and play basic piano just using my eyes to control my hand. Don’t get me wrong: in spite of all that progress, having the end prognosis confirmed made me deeply sad.  My skill as a violinist was integral to my pre-accident identity, and loss always hurts. I had envisioned God would answer my prayers by completely restoring feeling (especially since feeling is the key to playing violin). It didn’t happen. He did answer my prayers though, by giving me a gift I discovered only a short time ago. For the last year, my therapists wisely pushed me to the limits of what I could do without saying what was reasonable to expect from a stroke patient. This led me to believe I was making a “normal” amount of functional progress. However, at my most recent neurology check up a couple of weeks ago, the doctor  confessed that in 30 years of practicing he’d never seen someone able to use their hand “normally” if they couldn’t feel it. Wow. God doesn’t always answer prayers exactly the way we want Him to, but He does answer them in the way He knows is best. I’m extremely thankful for the ability to be an atypical patient and succeed at what is usually impossible.

On the brain note (it’s funny how brains always work their way in to these posts), we continue waiting to see if my new medication will kick in and begin working. Seizures are still frequent, which keeps me at home and often reliant on the transport wheelchair since my ability to walk is impaired for a few hours after I’ve had one. We keep hoping and praying…but in the meantime I wanted to share with you all the exciting progress God continues to bring in the other aspects of my recovery 🙂

Grace: Hi everyone! We hope you’ve all had a merry Christmas and are having a happy New Year’s Day. 🙂 This holiday week has been nontraditional to say the least, but incredibly meaningful and hopeful (especially compared to last year!). Last year I spent Christmas in the hospital and hadn’t even graduated to using a wheelchair. This year felt much more like our “first married Christmas” as we got some practice splitting celebrations between families (on separate days, since I still struggle with fatigue) and started our own personal Christmas traditions on Christmas Eve.

Fast forward to Saturday – the 30th – and we had the privilege of celebrating our 2nd wedding anniversary. This too felt much more like our first anniversary, since last year I only got to see Ivan for an hour and a half that day: he was moving us out of our old apartment and into a handicap/wheelchair-friendly one, plus dealing with other legal paperwork (all very necessary to the husbandly quality of providing and protecting, but decidedly not romantic). To be fair, the fact that I had just starting learning to transfer to a wheelchair with lots of assistance, had half my face still paralyzed from the stroke, and was working on swallowing without drooling was also decidedly not romantic. So as you can see, we had A LOT of catching up to do on this anniversary. A lot. We still had to split up the festivities over several days due to fatigue and seizure triggers, but I think we made the most of what was available at this stage (sushi for Ivan, coffee for me, and book browsing for both of us). And at the very least, being in the same place at the same time sans moving boxes, facial paralysis, drool, etc, felt like a celebration in itself.

To gloss over the challenges of this week would be misleading: several seizures, my new transport wheelchair, and lots of sunglasses and earplugs to minimize seizure triggers were all involved…not to mention missing church yet again. BUT the overarching theme has been gratitude and celebration. This time last year I doubt we could have imagined succeeding at or even attempting all the things we did do this week. It has truly been a week of blessing to our hearts – and I hope to the hearts of both our families too.

Ivan: Wow…another year is here!! As I take time to reflect on the past year as well as where we are right now, to be honest, I’m not even sure exactly how I feel. We’re still in a transition period, and we aren’t sure how that will end up. But I’m reminded of God’s truth that never changes:

King Solomon said, “Don’t boast about tomorrow, for you don’t know what a day might bring.” Nor what a year may bring, for that matter. So many things can happen in a year!! At times 2017 felt much longer than one year, but as I’m typing this it almost feels like it went by in the blink of an eye. What will 2018 bring? Only God knows. But He knows! So much of life feels uncertain because we don’t know what the future holds, but God knows and He extends His hands to invite us all in to His love and grace.

One thing I am sure of, is that Grace and I are so thankful for God’s care and provision throughout last year! We are thankful for the prayers of our brothers and sisters in Christ…your prayers! We are thankful for opportunities to grow, learn, and make progress, especially in terms of Grace’s recovery. God is a God who heals, restores. Healing takes time, and will be fully completed in Heaven, but we are grateful for the “in between” time–for the present, for each day that we get to walk closer with Him as He guides us through dark valleys as well as green pastures.

God deserves all the glory for 2017, as He will for 2018 and beyond…here’s to another year of pursuing and loving Jesus, as He has first loved us! 🙂

Happy First Day of Winter, everyone! I don’t know about you all, but I’m celebrating the shortest day of the year with a cozy fleece-and-scarf combo, paired with a steaming cup of Peet’s coffee (by far the best coffee in NorCal…or possibly anywhere).

So after that shameless plug, down to the real post 😉 :

We’ve spent a lot of this holiday season in various medical facilities (NOT exactly how we planned for things to go) and you, reader friends, have gone right along with us. However, Christmas is a time for celebrating all the gifts we’ve received: most notably our savior Jesus, but also literally thousands of other blessings that pop up every day.

So in the spirit of Christmas, I wanted to share with you all a “little” praise from last night: I played a game for the first time since the accident! My family has always been into games…card games, board games, long games, short games, etc…pretty much any kind of game except video games 😉 . The game enthusiasm dates back to our Wisconsin years, where frigid winters and little daylight made indoor games our pastime of choice.

Anyhow, the brain injuries from last December put my game career on a hiatus…short term memory, sequential thought, strategy, and spatial discernment all being skills I suddenly lacked. However, Anna brought a new card game called Sushi Go when she moved home last weekend, and it looked so adorable and fun that I just had to try it. We started out tentatively: Ivan and I were a “team” (Mom and Anna played for themselves since it’s not a team game) so I could have someone to remind me of the rules and give decision-making hints. It took less than 5 minutes for me to start debating Ivan’s strategy rather vigorously…at which point everyone voted that we’d all be better off (i.e. happier) if I played solo. I successfully made it through 2 games of Sushi Go all by myself! While Ivan ended up winning both rounds (I guess I shouldn’t have argued with his strategy after all) and Mom and Anna tied for the middle spots, my scores were still close enough to theirs to be respectable. It might seem like a small moment in the middle of “normal” holiday festivities, but last night was actually a great tangible reminder of skills regained. I think God knew we needed another landmark for how far He’s brought us already, and encouragement that no matter what current brain drama may be unfolding, He’ll keep carrying us the rest of the way.

Also, I’m reminded of how much I like games….and sushi.

Grace: Hi Everyone! As I think you already know, I spent Monday-Saturday of last week as an inpatient of the Epilepsy Monitoring Unit (EMU) at Kaiser Redwood City. The purpose of the visit was to reexamine my initial diagnosis and uncover why my seizures appeared to be getting worse instead of better. Since that unit is very specialized and seems to have a long waitlist, the fact that I got a bed there so quickly is truly an act of God and a result of your tireless prayers…so once again, thank you! The good news about the EMU is that everyone (doctors, nurses…EVERYONE), was kind, helpful, and expertly trained. The bad news was that since my head had to be hooked up to an EEG machine for 5 days, I couldn’t really leave my bed (much less shower….GROSS!!!) for 5 days. Hopefully this explains the lack of photo documentation during that part of my stay 😉

Okay, so the part we’ve all been waiting for: results. Although I imagined that we’d get some definite clarity and direction after the first day or two, that was not the case. My unusual symptoms had even my initial specialist confused, and we all began to fear that I might leave the EMU in as unclear a state as I arrived. This drove us to a lot of prayer and crying out to God for some sort of intervention…. and was possibly the biggest faith challenge I’ve faced thus far: could I keep saying “And if not, He is still good” when it felt like I’d already been through too much and just couldn’t keep going anymore?? But mercifully, after putting us through that test, God did have other plans. On Friday – the last day of testing – God brought a new epileptologist who was able to decipher my complicated brain. He reviewed all my recordings and explained that although there was focal epilepsy in the stroke areas of my brain, it wasn’t causing the entire problem. Instead, my large and unusual-looking seizures were the result of the traumatic brain injury (TBI) overreacting to focal seizures occurring on the other side of the brain. Therefore, with a medication change to control – or at least diminish – the epileptic seizures, the large TBI  seizures should go away too. (Simple example: a person who’s allergic to cats doesn’t sneeze if they’re not around a cat).

So, things to be thankful for:

• Although the epilepsy diagnosis is still permanent, the new med seems to be working well so far and I’m doing better at home
• The large seizures we’ve all been so worried about weren’t actually harming me since they were more of a reaction and didn’t involve extra electricity in the brain

Even my fabulous new doctor admitted that this won’t be an overnight transformation like some cases are, but he was extremely positive and optimistic about the long term likelihood of my functioning “normally” and without visible seizures. Praise God!! That is the most hopeful outlook we’ve heard in a long time – and a superb early Christmas present. 🙂

Ivan: Just wanted to chime in…yes, last week was another challenging week, but God yet again proved Himself faithful (spoiler alert: He always will ;)). To reiterate what Grace said, our current diagnosis is that Grace has focal seizures which immediately trigger larger TBI-caused seizures. Medication should help control the focal ones, and the TBI ones should heal with time. On behalf of Grace and I and our families, thank you all so much for your prayers!! Our God is mighty, holy, loving, and present, and we know He hears our prayers. As we approach Christmas, may we pause to reflect on His eternal gift to us and thank Him appropriately by worshipping Him in our lives. God bless you all!

It is truly surreal to realize our accident story started one year ago today! God’s grace has brought us way farther than most people would have predicted if they looked at the injury reports on this day last year…and yet even as we sit down to write this commemorative post, I’m reminded of just how far we have yet to go.

For those of you who have been praying and following our recent “seizure saga”, we do have some good news to report. I had another severe incident the day after Thanksgiving that landed me in the ER…again. (As in, I’ve been there so many times this month that the staff already knew who we were when Ivan and my dad brought me in. Yikes.) However, while the event was highly unfortunate, God did use it to produce some much-needed fruit. I’d already been referred for a 5 day EEG study to help solve the mystery of what exactly is happening in my brain…but we’d been warned the waiting list for that test was at least 2 months long. “2 months” sounded nearly catastrophic to us, since the severity of my recent episodes has caused therapy to be suspended and relegated me back to a transport wheelchair any time I need to leave the apartment (definitely a downer given how hard I worked to be wheelchair-free earlier this year). HOWEVER…after last week’s incident someone (probably a doctor but also absolutely God) worked something miraculous…and the short story is that I’m being admitted to Kaiser Redwood City to begin the study tomorrow. Tomorrow. Giant thanks to God, and to all our prayer warriors!

If I’m being honest, I must admit that a transport wheelchair and yet another hospital admission were not in my original vision of how we would commemorate our first “accident-aversary.” But nevertheless, these are the things God chose as best for this day and this upcoming week, and we desperately need them both. While recovery might not always be linear (only moving forward and upward), it’s always moving in the exact direction that God wants. And for now, we are full of thanks for what He’s already done, and full of prayers and hope for the much-needed clarity this week could produce.

Ivan: Wow. One year…so many emotions come with this landmark date. First and foremost, glory to God for all He has done, is doing, and will continue to do! He knows the span of our days from beginning to end, and His loving, glorious purpose will stand. This day last year God chose to spare Grace’s life, and we trust that He has more for her here on earth before she comes home to be with Him forever.

As Grace said, we hoped that by the one year mark we would’ve left the “critical” stage of her recovery and have moved on to the slow-and-steady part of her recovery…but the recent resurgence of seizures has forced us back into a period of multiple hospital trips and even another multi-day hospitalization. But God knew this was coming too, and we will keep trusting Him.

Thank you all for your continuing prayers for us! We can’t thank God enough for all of you, and we hope you all know how much we love and appreciate you all! May God keep working in all of our lives, and may we live open to His love, grace, and guidance. He gives us peace in the midst of the storm. To Him be the glory forever!

Hi everyone! First off, Ivan and I owe a giant THANK YOU for all the love, prayers, and concern we received after Ivan’s post 10 days ago. The love God shows us through you all is literally a pillar of support for each new trial we face. So, from the bottom of our hearts: thank you!!

From the medical side, I wish I had more positive news to report, but we haven’t made it that far yet. Some of you may know that I spent the Sunday night and Monday after Ivan’s post as an inpatient in the neurology unit at Stanford, but we will need to do a more extensive test before we get good, solid answers to share with you all.

But in the meantime….it’s THANKSGIVING! I don’t think there’s any mistake in the timing of all this: what better challenge from the Lord than to seek a thankful heart in the midst of uncertainty and waiting? So here’s some things we would be very remiss if we didn’t celebrate this week:

1. I can walk, talk, eat, and think! Just around this time last year, all of those were thrown into serious jeopardy.
2. God has placed us in the perfect location for our needs at the moment (close to my parents, Kaiser, and Valley Christian).
3. God worked through many people – especially our loving and concerned Hillside family – to provide a job for Ivan that placed us in the ideal location I just described.
4. MY FAMILY. I literally have no idea where we would be without them. I think we all hoped that Mom would have graduated from extensive “babysitting” and medical care duties by now. But even as these needs resurface so unexpectedly, she’s jumped back in with her whole heart, and Dad and Anna have been right beside her. Not to mention the five months she spent living with us in Riverside earlier this year.
5. Ivan. He’s embraced more pressure and responsibility than anyone could say was reasonable for a 23/24 – year-old…and done it with a consistent faith in God’s love and unwavering love for me…no matter what my latest “problem” happens to be. As we approach our second anniversary, I really can’t imagine a better best friend or husband.

And last, because He is the most important….I’m thankful for our loving Heavenly Father. No matter how difficult each day may be, I’m thankful we can cling to what we know of Him. He created us, saved us, loves us unconditionally. He saw and planned the end of my and Ivan’s journey before we were born, or met each other –  much less started the beginning of it almost a year ago. And the best part is: He never makes mistakes.

Ivan: Hello everyone! A lot has happened recently that we’d like you all to be aware of and that we’d appreciate lots of prayer for.

Two Thursdays ago (11/2), Grace met with a new neurologist who specializes in epilepsy. She diagnosed Grace with permanent focal epilepsy, which means that the seizures are coming from a specific part of the brain, as opposed to a “generalized seizure” which occurs throughout the entire brain. Unfortunately, since Grace’s seizures originate from the parts of her brain that were damaged by the strokes, they are permanent…you can’t reverse a stroke. This was a huge blow for us, because not only did we just recently learn that Grace’s “episodes” were actually seizures (we were hoping they were TBI-caused episodes that she’d eventually grow out of), but while we knew that seizures can range from mild to severe, we didn’t expect to receive a diagnosis of permanent focal epilepsy (which is pretty serious).

The following Sunday, Monday, and Tuesday, after adjusting some medication, Grace continued to experience seizures, but this time with new symptoms indicating a severe form of seizure. We reported these new developments to Grace’s neurologist, and on Wednesday her neurologist called us and gave more news: based on the symptoms we reported, Grace is at risk for status epilepticus. This is a condition in which a person enters a prolonged seizure or a series of back-to-back seizures from which they don’t come out. It can be fatal.

The doctor adjusted Grace’s medication again, and Grace began taking the new meds on Wednesday. The goal of epilepsy medication is to control the seizures (meaning, prevent any from happening), not necessarily eliminate the seizures–but on Thursday, Grace had another seizure. Which brings us to…

Friday, November 11. Yesterday morning, Grace was doing her morning exercises when an unexpected loud sound triggered a seizure. I was there with her, so I gave her a “rescue” med that’s supposed to quickly prevent more seizures from happening. A minute later, she had a second, then a third. I gave her more of her rescue drug. Twenty minutes later, she had a fourth seizure which lasted more than five minutes, which was my cue to call 911. Grace’s fourth seizure lasted a total of twenty minutes, during which time she was unresponsive, crying, breathing rapidly and showing a rapid heart-rate. The paramedics arrived and brought Grace to the ER. I caught up with them at the ER and learned that Grace had had a fifth seizure en route to the hospital–they’d given her even more of the rescue drug then.

Grace and I spent yesterday afternoon in the ER as the doctors monitored her to see if the medication finally worked to suppress any further seizures from happening. During our stay, Grace had a sixth seizure…cue more drugs. But praise the Lord, they stopped at six. Around 4:30pm they let us go, and we picked up even more new meds on our way home. Grace was very, very drugged–her thought process and speech were slowed, her balance was impaired, and she felt very nauseous.

We got home and tried to eat something but she couldn’t keep it in…after a few minutes we tried to eat again, and this time everything stayed down. All of last night Grace basically couldn’t support her own weight, her mind was very cloudy, and she could barely keep her eyes open more than ten seconds. The way a lot of these epilepsy drugs work is to slow down the electrical impulses in your brain, so that a seizure can’t occur (a seizure is like an “electrical storm” in your brain).

This morning Grace is still very drugged and is mostly bed-ridden. I don’t want to think about how much drugs they pumped into her body yesterday…not to mention the hundreds of thousands of pills/IV dosages she’s had since December 3 last year. She’s been incredibly brave and strong, still trusting God. But she was scared yesterday, and I was scared.

From a human perspective, this is all too close to death. For the believer, death means meeting Jesus face to face and being with Him forever, which is the best, in the most literal sense of that word. But while we are earth-bound, death reminds us that sin has broken the world, and our lives.

But God is still sovereign, still good, still gracious and merciful and in control, and powerful and faithful and worthy of all praise, glory, worship and honor. Our Lord Jesus has overcome all, and we will keep walking with Him.

Thank you all for walking with us! Grace and I “thank our God every time we remember you.” We love you all, and thank God for loving us first. To Him be all the glory now and forever!