Walking With Grace

This is the beginning of an unusual week. Exciting, but still unusual. As Ivan wrote to you all last week, we are beyond grateful that God has provided a way for us to join our families – and new extended church family – up north…especially since our recent “hospital adventure” confirmed that life will probably be safer and easier if I can be physically with or at least close to a family member while Ivan is away at work. Praise God for providing for us step by step!

On the other hand, these two transition weeks (or “packing weeks” if you happen to be Ivan!) have also become processing and grieving weeks for me. I think for the first time since the accident, I have been able to think through what happened  and open my eyes more not only to God’s provision but also to what was lost. Let’s start with the good things: I have both my legs (yes, even that was at risk once), I can walk, I can move my left arm and hand, I can swallow, talk, eat, think, etc. My balance is getting better, and I can even go for short walks outside! My brain can tolerate listening to music again. I can take care of most personal care. It’s not hard to remember a time when I did none of those things. However, I’m still haunted by some things too. Obviously, we don’t really know why this happened at all. I don’t have feeling in my left hand, and as time passes it becomes less likely that I will. This has separated me from a lot that I love – most importantly violin (including 17 years of study and 2 years living in New York at a conservatory), but also cooking, or even many chores and normal “wife things” I used to be proud of. Church, school, and most social activities are off the table for now, and since the average traumatic brain injury (TBI) recovery time is 1-2 years, we’re barely a quarter of the way through that.  Dealing with TBI is a complicated daily struggle that Ivan and I – and my mom when she was here – have gotten better at but are still trying to figure out. Pertinent example: I think this  last week has taught us that moving definitely falls into the category of “what not to do with TBI,” but nevertheless, this is where God is taking us! And I know it will be fantastic when we finally arrive.

So, circling back, my first reaction to the sudden, recent introduction to grief was to try to “fix myself” back to my normal outlook. After all, these moments before Ivan and I dive into our new life should be filled with celebration and anticipation, not sadness, right? But I don’t think anyone can “schedule in” grief to a convenient day or two somewhere, and I’m definitely learning that I can’t just arbitrarily “fix myself.” God knew what He was doing by shielding my mind and heart from sadness before, and He knows what He’s doing by opening up my ability to think and feel more deeply now. Grief is part of life…it says that in the Bible more places than I can count!…and God designed humans with this potential for a reason.  I know we’re not even remotely close to the final paragraph of our story, and my prayer is that He will use this new emotional component to dig deeper into my heart (and Ivan’s too), and keep equipping us for the plan that’s being unveiled inch by inch. Besides, who says that grieving and celebrating are mutually exclusive? Even as my heart mourns for all the parts of my old self that seem gone, and the perennial “why?” of the accident that I wonder if anyone will ever know for sure….just typing the list of “good things” in the last paragraph reminded me of how much I’ve been given back that we had no guarantees for at the beginning of this year. God is good…and I know once we get to San Jose I’ll have more things than I can count to keep adding to my “good things” list. So stay tuned! 🙂

Hello everyone! It’s been a while since I last wrote in, but Grace and I have some big news we’d like to share with you…we’ll be moving from Riverside to San Jose at the end of this month! This is a decision we’ve been praying and thinking about for a long time, but we’ve come to the conclusion that we’ll need to be closer to our families as Grace continues to recover. Grace’s parents live in San Jose, and we’ll actually be staying with them for a time until we can find our own apartment. My parents live in Concord, which is also nearby, so it will be a huge blessing to be so much closer to our families!

Thank you as always for continuing to pray for us…we can’t thank you all enough. Please pray for us now as we prepare for our rapidly-approaching move! We know that God has His sovereign hand in all of these matters, and we want to continue to trust in His timing and provision, and to rely on His strength, peace, and wisdom during this time. Thank you all again so much for your love, prayers, and support!

In the words of C.S. Lewis: “Further up and further in!”

Yesterday, we had an insightful visit with my regular neurologist following our unexpected hospital stay earlier this week. But before getting into that, we want to express how much your concern and support blessed both of us after the hospital update! We received so many messages, texts, and comments, reminding us that we still have an army of godly friends and family who are lifting us up in prayer daily…and that means the world to us! I also firmly believe it has made all the difference in the speed and success of my recovery up to this point (friendly reminder – back in February my projected “fully able to walk” month was September!). So thank you all for staying with us and striving on our behalf, even in unexpected twists and turns! Also, special shout-out to my mom who had planned to come back down Monday to move my sister out of CBU, but instead jumped right into the hospital scenario, stayed with us to help stabilize things for a couple of days, and still moved my sister out of her dorm on time – in spite of  being sick on top of everything. Thanks, Mom!

And now onto the crucial neuro details. As you may (but I hope may not) have experienced, neurology is an incredibly overbooked and difficult-to-penetrate specialty. So difficult, in fact, that even with a hospitalization and TIA diagnosis, the best they could do for us was schedule a phone consultation for yesterday morning. Neither Ivan nor I felt like a 5-7 minute phone call was going to be thorough enough to come up with a good treatment plan after my unexpected downturn, so we were struck with a crazy idea. Obviously, my neurologist had reserved time to call us…so what if we just showed up at his office at that time and asked to talk with him in person?? Not likely we would make it past the front desk, but still worth a try.

So that is exactly what we did. In spite of all the odds, skeptical nurses,  and the fact that he was completely booked for the day, our neurologist not only saw us, but gave me a full exam and spent time reviewing my brain and artery scans from Monday and Tuesday. What an answer to prayer – and a nice doctor! Here’s what he came up with:

1) He generally agreed with the TIA diagnosis at the hospital, and upped my blood thinner dosage in order to prevent any future TIA/stroke events.
2) On the other hand, he also mentioned that TIAs and partial-onset seizures share some similar symptoms. I’ve been on a low-dose seizure medication trial for a month because my March EEG came back as somewhat abnormal, and because he suspected that some of my TBI “anxiety episodes” might actually be seizure activity. Given this background, and because I continue to have “episodes” on a fairly regular basis outside of the extreme symptoms on Monday, he decided to increase this medication as well. This will insure he is better addressing my more regular difficulties, even though the Monday episode was still most likely a TIA.

Moving forward, we’ll take another month to see how my body responds to both these medication changes, then meet back again in early July to decide on the most effective treatment plan to stick with. Ivan and I are curious to figure out what that will end up looking like…but in the meantime, we’re very thankful for a kind and thorough doctor, and for a new medication plan that we hope will keep life safer and more normal!

Last weekend was such a high point with Ivan’s graduation…and then came Monday. I know there is a multitude of “Monday jokes” that are made on a regular basis, but it would be an understatement to say that this Monday was, well, not the best. In fact, the gif below is a pretty accurate representation of how we feel right now:

Actually, it started out pretty nicely – Ivan went to work at the high school like normal, I started my therapy/morning routine at home, and we were both still celebrating the glow of a degree well-finished. Until I stood up and completely lost my balance. Thankfully, I caught myself on a book shelf before I hit the floor and was able to make it to the couch to lie down, but I was definitely scared. With a history of 2 strokes, as well as a traumatic brain injury that is still healing, balance – or lack thereof – is something you take very seriously. Up until that morning, I had experienced surprisingly few balance issues and was improving much faster than originally expected. So suddenly losing my balance was a clear warning sign that something could be going wrong. Ivan called me as soon as  he could head home from the school, but when I tried to talk on the phone, it quickly became apparent that I was struggling to get any words out. Thankfully my speech came back after a few minutes, but as time passed, my balance continued to deteriorate. By the time we called Kaiser and they told us to come into the ER, I couldn’t keep myself upright without Ivan supporting most of my weight, and by the time we made it to the hospital, I could barely transfer out of the car seat into a wheelchair.

Since I was experiencing stroke-like symptoms and had already had 2 strokes as well as a complicated medical history, the biggest priority at this point was to ascertain whether I had, in fact, experienced an additional stroke.  With this in mind, the ER doctors whisked us back for a CT scan followed by 3 types of MRI exams, as well as an ultrasound of my carotid arteries (my right carotid artery was dissected during the original accident, so it’s always a source of concern). These tests take a long time to get through, and even longer for doctors to read and deliberate on, so I ended up being admitted to spend the night in the hospital until they could get a clearer picture of what was going on. Poor Ivan – he opted to spend the night in my hospital wing, which meant sleeping in a waiting room chair since the unit wasn’t set up for overnight family visitors.

To make a long story short(er), here is what we know so far: 1) No new strokes showed up on the MRI (thank you, Lord! 2) Although it looked like there might have been a new clot in the carotid artery Monday night, it didn’t show up on the Tuesday morning scan, which is also a praise. 3) The symptoms appeared to be a mini-stroke (also called a TIA), but those don’t show up on MRI readings.

So, to conclude my convoluted Monday story…I’ve been home again since Tuesday afternoon, we’re praising God that there was no additional stroke damage on the MRI, and we’re still in the process of working with our neurologist to decide if there should be any medication changes or other measures to prevent additional TIAs or a real stroke.

God is good, and I’m so thankful for His healing presence every step of the way…but this was a great reminder of how much we still need Him during the twists and turns of the recovery journey…and how you literally never know what a day might bring!

Yesterday, Ivan did it. he graduated with a master’s degree in Piano Performance, as well as an additional concentration in Music Composition. After being together for three years, I’ve realized that he’s too humble to talk about himself – in person or more recently on the blog – but I think now is the perfect time to stop and marvel at all he’s done during the past three years…and especially during these past five months.

Master’s Degree Years One and Two: Ivan transitioned into a role as a performing arts assistant at a local high school, established himself as a pano teacher and independent musician in Riverside…then proposed after I graduated from undergrad! We got married halfway through his second year, and he gave his graduate piano recital last June.

Master’s Degree Year Three:  I think by now y’all are pretty familiar with all the craziness that happened last December and that has been following us ever since. But somehow, in the middle of everything Ivan managed to finish the composition portion of his degree by writing a piece for symphony orchestra, while simultaneously handling lawyers, insurance, moving to a new apartment, 4 part-time jobs…and well…me.

Earlier this semester when we were transitioning to life at home again, his typical day included wound care for me starting at 6 am (these were 30 min sessions) so he could make it to work on time, a full day of teaching, wound care again when he got home at night, taking care of administrative/legal tasks, homework, helping with showering, etc, plus waking me up two or three times in the middle of the night to stay on my medication schedule. Yikes. Thankfully we’ve definitely graduated to better things – like sleeping through the night! – but my point in sharing this little vignette is to recognize what an amazing accomplishment last night was for him, given all the extra odds he was up against. Even more amazing, however, is the fact that I have not once heard him complain about anything, no matter how tired or stressed or busy he was, or how much care I needed – not even once. I still can’t figure that one out! Well,  in a way I guess I can: from a human perspective that attitude seems highly improbable if not impossible, so I know that it was a powerful expression of Christ’s Spirit shining in Ivan’s heart.

Last night was incredibly special, albeit bittersweet, for both of us. Ivan has been at CBU for seven years if you count undergrad and then three years of grad school, so it made me incredibly proud to see him finally conclude this formative chapter of his life. In addition, as a special honor for him and in recognition of all we’ve been through in the past few months, he was the first student that has ever been asked to give the benediction at graduation (a role that is usually assigned to a trustee or faculty member). Ivan’s family came down from the Bay Area and joined us yesterday for lunch before attending the evening ceremony with him. This was especially meaningful, not just because they’re his family, but also because I was not strong enough to attend the ceremony myself. It made me super happy that he would still have a “fan section” there cheering him on. And on a side note, praise God for whoever developed FaceTime! That allowed me to watch him virtually, even though I wasn’t physically present.

Wrapping things up, yesterday was a beautiful expression of where we are right now: Ivan’s success, the support of family and our CBU community, and the still-looked-for time when we will be able to do everything – including special events with thousands of people – together as a husband/wife team. Most of all, it was a strong depiction of God’s grace – the grace that has enabled Ivan, held us together, and will keep holding us together no matter what. Thank you, Lord! And Ivan, I love you. Forever, completely, and no matter what.

Today marks 5 months from the day that spun our lives around last December. That day seems like a lifetime ago, and as I look back it literally takes my breath away to think of all the phases, changes, successes, and struggles that can be packed into that amount of time. It’s already hard to remember what life was like in a wheelchair…but only 3 months ago they were telling us that I might not finish learning to walk until September. Wow.

These verses from Proverbs 3 felt like they jumped off the page at me today, as they summarize so perfectly where Ivan and I are in our journey:

“Trust in the Lord with all your heart, and do not rely on your own understanding; Think about Him in all your ways, and He will guide you on the right paths….This will be healing for your body, and strengthening for your bones.”

Do we have God’s next steps completely figured out for after Ivan’s graduation this Saturday? Not yet. Do we understand the “why’s” of this accident, or how it will fit into the larger framework of our lives? Nope. Are we still waiting for strength, guidance, and yes, more healing? Absolutely. But really, when you simplify it down, doesn’t everyone long for and need those things, in one way or another? We’ve been given an unusual situation to wade through and figure out, but the desire for these basic needs isn’t unique to us – it’s universal. I’m so glad God has this yearning, in my heart, in Ivan’s heart, and in your heart, held in His flawless, sovereign hands.

This week was a big milestone for us because my mom drove back up to San Jose to rejoin my dad this past Thursday. I am so beyond happy for them! ❤ I know I’ve said this on the blog before, but I really cannot imagine what it would be like to live apart from Ivan for almost 5 months. My parents love each other very much, so it’s not like it was somehow easier for them to be separated than it would be for us or anyone else, but this was a sacrifice God laid it on both their hearts to make…and I can honestly say that I have no idea how Ivan and I would have survived this season without my mom living with us. Somehow, she took care of all the household chores, fed us, drove me to therapy and doctor’s appointments, and spent an incredible amount of time helping me and caring for me when I was too weak to do  even something as simple as brushing my hair.  She helped me practice therapy at home, thought of fun activities to make our “days off” exciting..and has also been a great advocate and supporter as I’ve begun trying to integrate more social and mental activities into my days again.

It made me very sad to see her go, but I know this is another milestone on Ivan’s and my journey, and a giant blessing for my parents as they are reunited and begin living and ministering as a team again.

So where does this leave Ivan and me? Ivan’s family will be here next week to help out until he graduates on May 6th, and then after that he will have more time at home since his own school is over and the high school he currently works part-time at will be finishing for the summer too. We are hoping and praying that God will provide full-time employment for Ivan in the coming couple of months…and when that happens we will figure out what my next phase of care and recovery will look like with Ivan gone more again. But for now, we are celebrating the tremendous gift my mom and dad have given us, and God’s tremendous blessing in providing the needed circumstances to reunite them again!

Just in case any of you might have been wondering what I look like in occupational therapy, this photo is a sneak peak. Who needs dignity when you could have this snazzy vest??

But on a more serious note, as we approach the last week of  April, it truly feels like we’ve been “showered” with reasons to give thanks! Here are some of my most favorite ones:

1. Goodbye, cane…hello, hands free! Yup, I am now able to get around the apartment solo. This has been a long time coming, and we are so thrilled!
2.  The left knee is finally straight! This also felt like it was a super long time coming…quite possibly because it involved sleeping in a large and somewhat odd-looking leg brace for a few weeks. I said “odd” because we couldn’t decide if it looked Medieval or more space age-ish. But anyway, having a straight left leg is a beautiful answer to so many prayers…especially since at my February and March ortho visits they weren’t sure if it was even possible.
3. Ivan is done with his coursework and will graduate in about two weeks! This accident has changed our lives in more ways than we can number, and I’m so grateful and proud he was able to push through and finish well in spite of having so many new “irons in the fire.”

Looking forward to May, here are some needs we are still waiting and praying for:

1. Return of sensation in my left hand –  it’s stayed consistently  numb since I woke up after the accident, and my neurologist confirmed that this is a result of the strokes, not trauma. Typically most stroke healing occurs during the first three months, so the fact that it didn’t heal during that time means we are now beginning to problem-solve in case that impairment is permanent. The good news is my therapists have taught me that it is possible to control a body part that you can’t feel (this really amazed me!), so I am slowly re-leaning some motor skills in spite of the “dead” feeling. However, unless the sensation returns, my ability to do any activity that involves heat, lifting, sharp objects, or fine motor skills will be significantly impacted for safety reasons. I’m also still not able to play violin at this point since it’s a very tactile instrument and is left-hand dominant. On the positive side though, I have had some successful experimentation with piano since it’s more easy to play by sight and the basic hand movements are simpler.
2. Continued mental healing. As my body grows stronger, we are increasingly aware of the healing in my brain that is yet to take place. Traumatic brain injuries take 1-2 years to heal, and the time frame for brain healing after stroke is more ambiguous. My therapists are doing their very best to help me face this unseen injury (including giving me homework such as “go into a coffee shop for 5 minutes”). We are slowly seeing improvement here, but my ability to talk to visitors, process information, make decisions, or be in any sort of a crowded or public environment without having a mental episode is pretty limited. I think this is most poignant because I miss being in church every Sunday…but with God’s help and continued healing I hope that worshiping in church will become a reality again.

Thank you all for walking with us every step of the way! I cannot get over praising God for all the progress this month has brought. He truly is powerful! And looking forward to our continued requests, I am confident that His hand will guide us toward His perfect new “normal” for our lives. Whatever that turns out to be, we know without a doubt that He is still good!

Grace: This is what Easter means to me. In a way it’s always meant that, since I was big enough to think about it for more than a minute. But now I’ve lived it in a new way, and I stare in awe at that verse. I’ve realized first hand how fragilely my body and spirit are held together, and  how effortless it would be to separate them forever. Ivan started telling me these words, probably before I was aware enough to understand, and he’s reminded me faithfully every step of the way. When I was completely “gone” in a coma..the Spirit of God was still with me, inside of me. When I didn’t know what was real and what was hallucination, there wasn’t a second that God wasn’t there. When my mind was too confused to pray or read or understand the Bible…God was still there inside of me. Even now, at my worst, my most frightened or anxious, my most confused, I am still indwelt by God’s Spirit.  That’s where I step back and marvel at God’s love: How could it be worth the separation, the agony and death of your Son – to do what?  To fill up broken, damaged, lacking creatures, creatures that could never give You the worship, or even the priority You deserve. No matter what has or hasn’t happened to us, we all fall among those creatures to some extent. But it was worth it to God. Somehow, in some way that my selfish and limited mind could never grasp – it was worth sacrificing  His glory through Jesus to gain back His broken children.

Ivan: “For me, living is Christ and dying is gain.” (Philippians 1:21). What a strange verse!  Dying is gain? Living is Christ? What does it all mean? It means that Christ is life: He is its source, He is its purpose and end, and He is life in the truest, richest sense of the word. This is what Easter is about. The triumph of life over death, of light over darkness, of divine, eternal goodness over the evil of sin and death. Christ is risen! He is risen indeed. “Life was in Him, and that life was the light of men. That light shines in the darkness, yet the darkness did not overcome it.” (John 1:4-5). Because Jesus lives, we can truly live. If God had chosen to bring Grace home last December, she would have gained a face to face relationship with God for all of eternity. But while she, and I, and all of us believers still remain here on earth…we have work to do. Let us advance His Kingdom through our everyday routines, through our jobs, conversations, activities, relationships…may we reflect the life and light of our Risen Lord in all aspects of our lives, for His glory. From the Utomos, Happy Easter!

This week was special because on Tuesday I graduated to a new therapy class! Yay! God is so good 🙂 I was somewhat reticent to share my original out-patient therapy level because it sounded a little depressing…but having gone through it I can now attest that there was nothing depressing in the actual doing of it.

For the past 2.5 months, I’ve been in an amputee therapy class. Yes, a therapy class for people who have lost at least one leg. Why? Because I wasn’t “advanced” enough for stroke (aka “neuro”) therapy. When I was told about my placement back in January, the then-23-year-old side of me had a mini-rebellion. What did they mean “you’re not advanced enough for regular neuro therapy”?? Wasn’t the average stroke patient old anyway?? I mean, how could my 23-year-old body be so behind elderly people?? Wow.

At first, I protested that I wasn’t going to the amputee class, but Mom and Ivan insisted I give it a try. Looking back, I think that’s an example of why God places us in families: to keep you from making silly decisions when your pride starts getting out of hand. So, at their urging I did go to the class (although there may or may not have been some protesting along the way)…and after a couple of visits I discovered I wanted to be there. First of all, everyone was learning to stand and walk, so it did actually make sense why I was there. Secondly, learning how to walk again is way harder if you’re missing a leg, so it gave me some perspective about how blessed I am to still have all my limbs. And thirdly, all the therapists and people there were super nice, so it really started to feel like a mini- family.

Fast-forwarding to this week: when I officially got promoted to neuro therapy, I was actually a little…sad! I’ve grown to love the amputee group and wish I could spend my entire therapy journey with the people I met there. But on the positive side, I’m super excited for the next 3 months of neuro therapy, and all the chances it will hopefully bring to get closer to a “normal” life again. Onward and upward!