“Everything He Does…”

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Photo op at Stanford!

“Everything He does reveals His glory and majesty. His righteousness never fails.” (Psalm 111: 3).

Hello, blogging family! May has been a “milestone month” for us the past two years, so I wanted to pause and commemorate past blessings with a “thank you” note to the Lord, and also to you as our prayer partners.  🙂

This month marks…

  • Two years since Ivan graduated with a Master of Music in Piano Performance and Music Composition. He finished his degrees on schedule even though his last semester was spent working overtime, hunting for jobs, and team-caregiving with Mom, in addition to keeping up with school.
  • Two years since I turned in my cane and graduated to walking unassisted. The journey was painful at times, but SO worth it. Thanks to God and my therapy team, I finished re-learning to walk six months ahead of schedule.
  • Two years since we packed our bags and made our way to San Jose! Many thanks to our Riverside friends who got us packed and loaded, and a GIANT shout out to Dad who sacrificed his Memorial Day weekend to drive the moving truck from Riverside to San Jose. The truck’s air conditioner wasn’t very cooperative and Central CA is like an oven, if you’ve never made that trek.
  • Two years since Ivan signed his contract with Vally Christian. We were grateful for any job at that point, much less a dream job!
  • One year since I went back to school to study English and creative writing. My therapy goal was to see if I had the cognitive focus/learning retention to pass a class with at least a “C.” It’s a struggle with everything else we’re up against, but I’m still in school and still passing classes! This experiment is also an example of God providing way in advance. We had no idea I’d return to being housebound and unable to handle a lot of visitors, but reading lots of books and setting daily goals is my lifeline to staying sane and happy!
  • Around one year since Ivan began his doctorate. We thought he’d need to shelve such an enormous undertaking until our lives evened out, but God provided the right opportunity, the right means, and just the right amount of endurance to jump in and stay in. Turning in papers at midnight in the emergency room, anyone?

This list is only a flyover of the two amazing Mays we’ve had thus far, and I’m positive we’ll have more to add to our “thank you” list next year. We’re almost half way through my time at Stanford, and although we don’t have updates to share just yet, I’m thankful for how hard my family worked to get me there – and the fact that somehow we were assigned to the best doctor they have. Only in God’s world!

Milestone Mays would also not be possible without each and every one of you. Your commitment to cover us with prayer is an  instrument of grace in our lives,  and we’re unbelievably blessed by the support we constantly receive. Thank you for walking for us and with us every step of the way!

 

Inching Forward at Stanford

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Mom is my designated Stanford driver ❤

 

Hi Everyone! It’s about time for an update on our journey at Stanford. My biggest blessing so far is that I’m being followed by one of the top research scientists for my particular neurological disorder. If anyone can come up with a solution for my seizures, it will be her!

So far, my new doctor has just been collecting data about the way my brain responds to the environment. She seems to think my condition doesn’t match currently available scientific data, but the good news is we’re still early on in the diagnosis process. As for me, I’m just grateful that I finally made it into the Stanford clinic and that God has placed me in the hands of the literally THE best possible doctor.

As you continue to walk with us, we’d love prayer for an accurate diagnosis and treatment plan, as well as strength for our daily challenges. We’re still dealing with the same frequency and severity of seizures as we were earlier in the year, and while Mom, Dad, and Ivan are doing their best as caregivers, we’d all be grateful for some relief. I always joke that they’re the ones who suffer most from my seizures. While I hate having them, I go to sleep right after they finish and usually sleep for a few hours before I try getting out of bed. In contrast, Mom, Dad, and Ivan have to watch me have the seizure, make sure I’m safe in bed afterwards, watch over me while I’m sleeping, and then help me after I get up. Their job is definitely more difficult than mine!

As always, thanks for your prayers, and we’ll let you know as we have more information. 🙂

 

 

The Man Who Hit Me (Part 2)

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Grace sent me this picture with our (then) kitten about an hour before the accident.

 

Ivan: Hi all! Happy Wednesday. This post will deal with events going back to the moment of the accident over two years ago, but first a brief update from the present: Grace is continuing to work with her new doctor at Stanford. Her doctor is gathering more information and working on putting together what we hope will be a viable treatment plan. Thank you for continuing to pray for us!

Now, for the main part of this post. The “me” in the title refers to Grace, and “Part 2” refers to our earlier post, in which we introduced a key character in our accident narrative: the driver who ran a red light on Saturday, December 3, 2016, and changed our lives forever.

I was not with Grace that afternoon as she waited for her crosswalk light to turn green and proceeded to step into the crosswalk to cross Magnolia Avenue in Riverside, CA. She had planned to get some food at Subway before meeting me to go a Christmas concert where she would play later that evening. When her light turned green, Grace took a few steps into the crosswalk as Mr. Driver (not his real name) failed to stop his car at his red light.

The information we have regarding this accident comes from video footage from a traffic camera at that intersection. This camera recorded the fact that, at the moment of impact, Grace’s head crashed through the car’s windshield, giving her a skull fracture at the back of her head; her body landed on the hood of the car. Mr. Driver stopped for a few seconds, moved his car forward a few yards, then braked so that Grace’s body fell on the road. Then he pulled over to the curb, where the police and paramedics eventually found him.

Grace’s accident was not a hit and run.

The Riverside Police Department was able to give me copies of Mr. Driver’s information. Grace and I know his name and where he lived at the time. Presumably, he has access to Grace’s information. We have never once heard from him since the time of the accident, even though he lived around the corner from our apartment complex.

In the forthcoming days and weeks I learned from a police detective investigating our case that, in the state of California, drivers who hit pedestrians are not charged criminally unless the pedestrian dies. Therefore, despite the severity of Grace’s injuries and the irreparable damage done to her quality of life, Mr. Driver has only been financially and legally accountable for his driver insurance’s minimal policy limit, and perhaps a ticket for running a red light.

God has been gracious to us in the time since the accident. He has always provided for our needs, not least through the tangible actions of many people who have sacrificially given of themselves to help us. Grace and I thank God for all of you!

At the same time, the fact remains that our accident serves to demonstrate how hope for ultimate justice should not be placed in human institutions. We are all flawed; our attempts at establishing a just society are also flawed. Yet God’s grace remains.

It would be an endless undertaking to enumerate the ways in which God makes His love and unmerited blessings known to us. Among these, Grace and I are thankful that God has chosen to allow Grace more time on earth; that He has given us family and friends who have more than supported us throughout our journey; that He brought into our lives attorneys who worked with us selflessly and patiently; that He himself never changes.

Our hope and prayer is that those of us who know God will continue to seek Him more and more through whatever He chooses to send our way, and that those who do not yet know Him would come to understand who He is and what He has done. Mr. Driver, Grace and I pray these things for you.

In the words of our Lord Jesus: “In this world you will have trouble. But take heart! I have overcome the world.”

 

Thank You for Your Prayers!

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Headed to Palo Alto!

Hello, Stanford! It’s surreal that we finally made it. I think these 67 days of waiting may have been the longest 67 days of my life (except for the last 67 days before my wedding, of course! 😉 ) On behalf of myself, Ivan, and the rest of my family, I’d like to extend a huge thank you to everyone who’s prayed for us, written, texted, and offered encouragement in other ways throughout this difficult season!

We were very pleased with my initial appointment this past Tuesday, and feel like my new doctor will be a great fit. The treatment process will most likely take a few months, but we’re excited to see how God will use us, and appreciate your prayers during this exciting but also exhausting new phase in our journey. We will keep you updated as things develop. ❤

How Much is Enough?

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Once upon a time, Baby Daisy had to learn how much was enough, too!

 

“Even when you get this, you’ll just want the next big thing.” I remember thinking No, this is THE big thing, although thankfully I didn’t contradict Mom aloud. I was around fourteen years old, and wilting through my first cognizant lack of love interests. Being homeschooled did nothing to revive my drooping boyfriend prospects.

I obviously outgrew this perceived life crisis, but Mom’s point stuck with me. There’s always a next “big thing.” When I did get my first boyfriend (yay Ivan!), I suddenly started imagining being engaged…then being married…then finishing grad school… And that was all before the accident. By now y’all know many of the things we’ve wished for afterwards!

God wants us to dream big dreams. He loves it when we ask for things! But how much is enough? I suspect that however much He gives me, or, you, or anyone, there’s always going to be a next “big thing!” No matter how certain we are that what we want is our ONLY big thing, or our LAST big thing, or our [insert other applicable word] big thing, it’s human nature to start wishing for something bigger and better later on. It’s also human nature to start taking our old “big things” for granted. How do we know when we have enough?

I’ve had plenty of time to consider this question while waiting for my first appointment with my new neuro specialist at Stanford. (52 days down, 11 to go!) This holding pattern has reinforced how much I’d love for my seizures to improve…but it has also reminded me how many times I’ve thought they were improving in the past, only to be disappointed later. In the middle of this internal back-and-forth, God brought to mind that early conversation with my mom about letting go of my next “big thing.” Last week Mom and I started remembering how many marvelous gifts God has given us over the past two and a half years, number one being my life. Then my legs. If they had broken a quarter of an inch higher, I still wouldn’t be walking. I might also be missing a foot. Believe it or not, next on our “big things given” list comes my brain! It may seem like a side show right now, but I had a decent chance of waking up with a child’s mental capacity, for all doctors could guess in December 2016. On the family front, God quickly brought Ivan a picture-perfect job in the Bay Area. Poor Mom couldn’t spend unlimited time helping out in SoCal, after all!

Suffice it to say my “big things received” list could go on indefinitely. Stanford is my current “next big thing,” but I can guarantee there will be more to come. So when I do I hit “enough?” I don’t know. I doubt anyone could ever know. But God knows, and I think He’s given some pretty great pointers for how to live while asking, and while waiting, and while second-guessing. Most obvious would be His directive in Matthew 6:33. “But seek first the kingdom of God and His righteousness, and all these things will be added unto you.” He wants us to ask Him for Himself and about Himself before we ask for anything else. But what are “all these things” that He promises to add? If you back up a little in Matthew 6, you’ll discover that Jesus is talking about meeting His people’s needs. I don’t know about you, but sometimes it’s pretty hard for me to tell where a need ends and a want begins. I’d call Stanford a need, but God might call it a want, depending on His purpose for my life. God grants all needs. He also grants many wants, but not necessarily all of them. So where does that leave me with my upcoming appointment?

For now, my first job is to ask God to give me more of His Spirit and show me more about Himself. My second job can be to ask for neurological progress, but I need to hold that request in an open hand. Is there a job from Him while I’m waiting for an answer? Daily life goes on, no matter the urgency of my or anyone’s request. Thank goodness God already answered this “what about right now?” question!

He wants me to cling to 1 Timothy 6:6. “Godliness with contentment is great gain.” More healing would be amazing, but my greatest priority should be to keep growing more like Christ…and to keep practicing contentment with the big things He’s already provided. In His eyes, that is better gain than anything else ever could be. That gain also lasts a lot longer than my body. It lasts forever!

 

 

 

 

A Whole New World

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December 2018 – my first time by the water in over two years!

 

“Thy kingdom come, Thy will be done in earth as it is in heaven.”

You’ve probably heard this verse a million times – whether or not you go to church! The Lord’s Prayer popped up in my inbox this morning as part of a pre-Easter devotional, and it fits perfectly with what I want to write about today. Where does your mind go when you hear those words? I’m guessing it goes to the word “Heaven.” Jesus is the speaker, after all, and he came to bridge the gap between earth and Heaven.

But what about the word “earth?”

Jesus’ model prayer doesn’t say “Get me off earth as soon as possible! I’ll do Your will in Heaven!” No. His prayer assumes we’re praying on earth.

I’m glad to be on earth.

Why would I possibly say that? I’ve been showering in the dark for the past five weeks so the bathroom light won’t trigger me. Having a seizure in the shower is…well…”dangerous” to put it nicely. I’ve spent most of the past five weeks with other lights dimmed, too. I spent most of the past evening in bed with a blanket over my head–the lightning from that thunder storm last night was not my friend! If I can’t wait to get to Stanford, I most certainly can’t wait to get to Heaven.

But if I can’t wait for Heaven, then why am I so glad to be on earth?

I’m glad because when God created the world, He said it was “very good.” Sin ruined the world just like it ruined human beings, but humans beings are still beautiful. I believe the world is still beautiful, too. Look at all the traces of God’s beauty that remain! The solar system, the Grand Canyon, even the grassy little dog park down the street – they all wear remnants of their Maker. I think God wants us to value what’s left of the world He wanted for us. The world matters so much to Him that He’s even putting a renewed version in Heaven for us to enjoy! If the world were only an unnecessary planetary mess, God would whisk us away to Heaven the moment we accepted Christ as our savior. But He doesn’t whisk us away. He leaves us here for a while. He wants us here for a while.

If I’m honest, this world can still feel like an unnecessary planetary mess even if it’s not one. From the tragedy in Ethiopia over the weekend, to the conflict over nuclear weapons, to something as trivial as my head-in-blanket moment last night, “broken” doesn’t scratch the surface of all that’s wrong with the big and the small. But God still calls His broken people beautiful, and I think He calls His broken world beautiful, too.

That’s what I want to say today. I love being alive. I love experiencing the world God constructed for his creatures. My body is broken and our world is broken, but I would still miss so much beauty and joy if I simply “scene selected” straight to Heaven. You’d be surprised how charming a sunny day can be, even if you’re just peeking around closed blinds! God wanted us to be physical creatures as well as spiritual beings. Even Jesus Himself had to take human form in order to redeem our souls.

I can’t wait to get to Heaven. I hope we all can say that! But I think embracing our human-ness involves loving our time on earth as well as anticipating our time in Heaven. Let’s stay present in every moment God’s designed for us. His plan for eternity is that our new selves will worship Him on a new earth just as fully as we will worship Him in Heaven.

Earth is beautiful, too.

Stanford: The Saga Continues…

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When you realize you’re only 1/2 way to the weekend…

Wednesdays perplex me.This was especially true when I was working! My first cup of coffee elicited “Yay! It’s already half way to the weekend!”. My last waking moments left me with “Ugh, it’s still only half way to the weekend.”

I am no longer working, but I can say my family and I are experiencing a “Wednesday” end to our February. I’m blessed that I’ve just been authorized for my first appointment at Stanford. That calls for a major yay-YAY! (Yes, I did just finish some coffee.) I’m somewhat less blessed that said appointment is not until April 2nd. Yikes. Just to give a refresher, I was released from the hospital on January 25th, at which time I petitioned my insurance to approve treatment at Stanford’s neurological research clinic.

I’ve got one month of waiting down, and one still to go. February 28th is the “Wednesday” of waiting.

It’s easy to focus on what I did NOT expect going into this trial: a Stanford wait list, way too many “call waitings,” and “out of office” emails, and missing paperwork, courtesy of my own insurance…not to mention keeping even more of our lights off at home, spending several hours in bed after every seizure, and asking Mom and Dad to completely rearrange their lives to supervise me every time Ivan leaves the apartment.

But there are good things I did not expect, either. I’m shocked at how positive, flexible, and God-focused my family continues to be with each new adjustment. I’m shocked at the volume of love and support pouring in from all y’all. I’m shocked at the degree to which God is digging into my own heart during this trial. It’s easy to fantasize about how spiritually healthy you are…until things STOP going your way. (My family has gotten box seats to this probing, and are always ready to jump in with wisdom and redirection when I need it. <3)

Most of all, I’m shocked at the beauty of God’s availability. He never shuts us down with “call waiting,” or “please hold,” or “out of the office”. He certainly doesn’t use a waiting list. While His answer may surprise us, He’s still always listening. Always. As I continue to marvel at the length of our odyssey to Stanford, I also continue to marvel at God’s limitless listening ear.

Waiting for “Better” during “Worse”

The story of my life right now.

Hi everyone! First off, I want to say thank you SO much for all the extra love, prayers, and support you’ve poured out on us during the last 3+ weeks! It continues to amaze and humble me each time God reminds me just how powerfully His love can work through our friends and family.

I’d originally hoped to have recovery progress, or a treatment plan, or a timeline (preferably all three!) to share with this post, but unfortunately those are yet to come. In the meantime I’m grateful for how much “overtime” Ivan and my parents are putting in to take care of medical/insurance logistics and to keep me safe at home. Talk about “laying up treasure in Heaven!”

This morning I revisited a story about Jesus healing a man who was lame. (It’s in John 5 if you want to check it out!) The story begins with Jesus seeing a lame man and asking him ” Would you like to get well?” I’ve always thought this was an odd way to start a conversation with a disabled person. Is there anyone on earth who would really answer “No thanks…I’m really quite happy being [insert debilitating ailment].” But this most recent experience is helping me understand Jesus’ question better.

I’ve always wanted to get better, and I’ve always had a perception of what that would (or at least should) entail. This most recent setback was absolutely 100% not on my list, and I find myself asking “God, when is it going to be enough already? Wasn’t it hard enough with the old seizure lifestyle?” It’s funny how that “old” seizure lifestyle is starting to look pretty great compared to the new one.

My family has been solid enough to remind me that this disappointing downturn looks to be God’s way of pointing me towards new specialists at a new facility…and therefore toward a new chance to get well. God makes no pointless decisions, but I do have to decide how open I am to His way of getting well. His way is certainly not my way right now, and I don’t know what His final version of “well” will be for me. What I do know is that I need to wake up each morning and try to answer Jesus’ question with a “yes,” even if His way of getting well involves yet another trial that I don’t want for myself or my family.

Yes, I do really want to get well. Yes, Jesus already knows what His perfect version of “well” will look like.

And in the meantime, there’s always The Princess Bride

 

ER’s and EEG’s

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So proud of you, Grace! Always keeping a great attitude no matter what.

 

On January 24 something very unexpected happened. For the past year or so Grace’s seizures have looked the same: light trigger, left hand comes up, body freezes, then the seizure releases after a few (or more) minutes. However, last Thursday morning while I was at work Grace had a “normal” seizure which then abruptly morphed into something we hadn’t seen before. Her whole body went limp and she struggled to breathe. Paramedics rushed her to the ER where, after several tests, doctors concluded that she had had some sort of rare but not-to-be-unexpected brain flare up. Monitors showed that although outwardly Grace looked like she was struggling to breathe, her brain was still receiving enough oxygen in between gasps. They told us we shouldn’t worry, and she was released later that day.

Last Saturday morning Grace had another of her “new” seizures, but having been reassured by doctors two days before, we kept her at home and she rested afterward. Later that night, however, another seizure came, and this time Grace  looked like she was struggling for air even more than before. We called 911 for the second time in three days, and the paramedics once again brought her to the Kaiser Santa Teresa ER near our apartment. It was around 7pm.

Eventually doctors decided that Grace should be transferred for an inpatient EEG monitoring, but since Kaiser Redwood City was full, she was transferred to Stanford Medical Center instead. The ambulance didn’t come to get her until 2:30am, and between the ride over and getting checked in Grace only “slept” from 4-6am that night. By now she had had several more of the new kind of seizure.

The EEG ran throughout Sunday morning, during which time Grace agreed to have a seizure purposefully induced via a doctor shining a light in her eyes. By Sunday afternoon the doctors informed us that the EEG results were inconclusive, and they recommended further outpatient treatment at a Stanford center specializing in neurological disorders.

Grace went home that afternoon and has been at home this past week. We are doing our best to resume our normal daily routines while dealing with the seizures as they come. I have tried to share this update with you all as concisely as possible, with the understanding that as a whole this past week-and-a-half has been unexpected, scary, and tiring.

At this point we are waiting to finalize our referral process to the Stanford center, hoping for little or no exposure to light triggers so that Grace can at least rest and resume her daily routine as safely as possible. Thank you so much for your prayers for us, and we will keep you posted as we learn more! God is faithful and good through it all.

Ivan Utomo, Ninja in Residence

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Anna even baked him a ninja birthday cake!

Ivan is a ninja. He enters and exits my parents’ condo undetected. Mom once checked out behind him at Costco without spotting him. He’s pushed, pulled, lifted, dragged, and (insert any other word for “toted”) me in and out of various locations without attracting so much as a startled glance.

Ivan revealed his ninja nature quite some time ago – Thanksgiving 2017, in fact. Some of you would remember the initial seizure saga reached a crisis around that time. None of you would remember that Ivan picked up an apple pie and brought it (and me) to my parents’ house for dinner that Thanksgiving. Apparently dinner went well, but our five minute drive back from my parents’ condo to our apartment complex did not. Most of that night is fuzzy (I was fading in and out of awareness between seizures), but I have one very high-definition snapshot of Ivan pinning me to a concrete wall with his left hand to keep me from falling. He was holding that pie high above his head with his right. Somehow (I have no idea how) he got me down a flight of stairs, across the complex driveway, through a hallway, and into our apartment…in between my full-body seizures. He never dropped the pie.

It’s January 2019, and Ivan is still a ninja. When asked if he wanted me to include his feats of stealth in my last post, he opted for silence. “Maybe later…” he conceded.

Well, it’s later.

If y’all remember, we hit the road to Itzhak Perlman after I’d had five seizures and taken a rescue drug. “Hitting the road” entailed Ivan wrangling me, my wheelchair, our sandwich-bag supper, a latte, and a Frappuccino into our tiny blue Yaris. Nothing was spilled, nothing (including me) was dropped, and no cars were harmed in the making of that production. Once installed, I sat for most of the drive with my eyes closed to avoid more light triggers. This required some expert driving on Ivan’s part so I wouldn’t get motion sick from the starts, stops, and bumps that come with a Bay Area rush hour. Upon arriving in downtown San Francisco, Ivan prowled for the unicorn parking spot that was wheelchair friendly, near the concert hall, and unlikely to attract unsavory attention – a tall order given SF’s parking reputation. Somehow he snagged a handicap spot that was curbside to the front doors at Davies’ Symphony Hall.

But this ninja’s mission was far from over. Ivan stood next to my wheelchair for almost two hours just waiting for the doors to open. He haggled with ushers to prove that we had indeed purchased ADA seats, that no I couldn’t abandon the wheelchair and navigate a staircase in the dark, and that  yes I would most likely need direct access to leave the hall during the performance (my brain is still easily overstimulated by noise). Ivan is possibly the most non-confrontational person I have ever met, but somehow he got exactly what he wanted from a potpourri of ushers in a potpourri of moods. He even talked one into clearing out a ladies’ room since I was too unsteady to go wandering through a crowded, tile-floored bathroom on my own.

The ultimate ninja test was yet to come, however. As the usher deposited us near Mr. Perlman’s green room, both Ivan and I spotted a giant problem. Stairs. The green room was up a flight of stairs. Unfortunately this particular usher felt his civic duty was complete, and so he retreated back from whence he came…without any parting words of staircase wisdom. Silently, Ivan leaned me up against a wall with his left hand, raised my wheel chair high above his head with his right, vanished, and was back again before I had time to process. I couldn’t place its source at that time, but I suddenly had a strong sense of deja vu. Where has he done this before??  It was the pie. Ivan did it during the pie incident. Unfortunately for Ivan’s sweet tooth, this time involved a wheelchair instead of baked goods. Mr. Perlman must’ve been a decent recompense for the absence of pie, however, since Ivan whisked me up the offending staircase and into my wheelchair in record time. It has since occurred to me that whisking someone who wobbles is scientifically impossible. Nevertheless, Ivan whisked.

Ivan, Mom, Dad, Anna – all four work overtime to keep me up and running every week. All four say they rely on the grace of God. All four are also fastidiously low-profile, and none better than the resident ninja. But sometimes, ladies and gentlemen…sometimes even ninjas get spotted. 😉

Ivan: I’ve read and watched all of Naruto.