Walking With Grace

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!

We’ve reached four months since the date of the accident…thank You Lord for bringing us this far! Life has been very busy and hectic lately, but it’s good to pause, look back, and reflect on how good, gracious, and merciful God has been to us throughout this life-changing time.

Many people ask me how Grace is doing…thank you all for asking! 🙂 Physically, Grace is progressing well. It seems like the wheelchair is [almost] a distant memory now, since Grace has even left her walker now and is able to walk with the assistance of her cane. She is still a long way from being able to walk “normally,” since her strength and balance definitely still have room to improve, but we are so grateful for the degree of mobility that she has already been able to attain.

Unfortunately, the state of Grace’s brain still prevents her from being able to be in public places, like church, or grocery stores, or restaurants, because of the overstimulation that occurs in these situations. Too much information, such as interacting with multiple people at once, facing open-ended decisions, or even just too much background/room noise, can trigger mild to severe panic attacks, in which Grace’s ability to speak or even think can temporarily shut down. Doctors say that recovery from TBI can take months, or years…but we’ll keep trusting God to lead us one step at a time!

Thank you to everyone who faithfully prays for us, encourages us, supports us! We love and appreciate you all more than we can say. Grace and I also pray that as we walk through this time of our lives, that God will use our story to encourage others who are going through hard times as well…God’s love and grace and peace and joy will forever be more than enough to redeem and heal any and all of the hurts of this broken world. To Him be the glory forever!

Back on December 4th, when I was having surgeries to repair a damaged artery in my left leg as well as the severe damage to my knees, the doctors also placed an IVC filter inside the right side of my abdomen. An IVC  filter usually sits inside a large vein just below the kidneys, and its purpose is to catch blood clots before they can travel to the lungs or brain. Since I had suffered severe trauma and would not be able to walk for several more months, the doctors thought my risk of developing blood clots was pretty high, and so they placed the filter as a preventative measure (ironically, this decision was made before they discovered I had already had two strokes from blood clots). The thing about IVC filters, though, is that they have to come out within a few months of being placed…otherwise they actually grow into the tissue of the vein, and that becomes its own issue. So, now that I am able to move around more, guess what had to come out?? The IVC filter!

A few weeks ago, I was disconcerted to learn that the filter is retrieved by making an incision through the neck into the vein where the filter is placed, then reaching all the way down the vein into the kidney area, catching the filter, and pulling it back out through the neck incision. Ew. (A pertinent question that came to mind was – why couldn’t they just do a small abdominal incision instead? Not sure on that one.) Anyway, I’d been consoling myself by imagining that I’d be asleep – or at the very least in a heavy twilight zone – for this procedure, and so wouldn’t be aware of all the “filter fishing” that was going on.

However, when we checked into the hospital early yesterday morning, I learned during prep time that although they would use a local anesthetic for the neck incision, I would be completely awake the whole time during the procedure. As you can imagine, that was precisely not what I wanted to hear. In spite of everything I’ve been through in the past few months, I hate surgical/medical/painful things, and want to be as far removed from all that as possible. Ivan held my hand and prayed, and both he and Mom stayed with me as long as they could…but by the time I got wheeled away for the procedure I was very, very nervous.

This story does have a happy ending, however. Once I got to the OR the nurse gave me some sort of medicine to make me relaxed, and although I was very aware of everything that was going on (including the filter traveling back up my vein to my neck)…..somehow I felt so calm and happy  that I actually didn’t care any more. If you had asked me earlier that morning, I would definitely not have seen that reaction coming!

So today we are praising God: 1) that the filter came out successfully,  2)That the experience was not nearly as traumatic as it sounded, and 3) That this marks the end of the procedures I will need done in the foreseeable future. God is good!

So I definitely didn’t imagine I would be writing this today, but… I got a cane! I know I’ve already mentioned that I never pictured myself wanting a walker either, but I think the odds of my wanting a cane were actually even slimmer. Nevertheless, life does certainly change your perspective on things..and now I’m super thankful to God to graduate to a new “accessory to the elderly.” 🙂

Honestly, I still feel a tad wobbly on my new cane compared with the walker, but I am excited for the “sleeker” vibe…and how much less work it is to get in and out of the car when we go to therapy! The overall orthopedic update is that my right leg is healing great, and is basically functioning like a normal leg again. The left leg (my stroke side), is noticeably weaker, and is also unable to straighten completely (imagine trying to walk with your knee slightly bent all the time). The good news is that it is possible to walk with my knee slightly bent, but it is more painful, and in the long run we really need and pray that it will be restored back to its full mobility. We keep asking the doctors and therapists for a prognosis on this, and have gotten an overall consensus that it is possible to be completely healed, but that since it is my stroke side, only time will tell. And in the meantime, I’m sleeping in a leg brace, just to increase the odds. 🙂

In addition to my flashy new cane, I also updated my glasses this week. We waited for about three months after the accident before we got my eyes checked, because vision changes can fluctuate throughout the healing process. As I’ve started to read and blog more, I noticed that I was having trouble focusing for long periods of time, and the eye appointment confirmed that my vision has changed enough to elicit a transition to bifocals at the ripe young age of 24. At the very least,  this was an excellent excuse to pick out some  fun new frames!

First off, what in the world is an EEG…and secondly,why did I just have one? Well, to summarize thoughts from my friend Google, EEG stands for electroencephalogram (yeah, I plan to stick with calling it “EEG” 🙂 ), and it’s a machine used primarily to diagnose and treat brain conditions.

In his last post, Ivan mentioned that I’ve been dealing with anxiety symptoms after the accident. Either a traumatic brain injury (TBI) or a stroke can frequently cause anxiety disorders in patients as they recover…and since I managed to have both TBI  and 2 strokes, well, the odds of struggling with anxiety are very high. Just to clarify, this type of anxiety is caused by triggers that are slightly different from the typical things you might expect, like feeling down or worried all the time…it actually happens when my brain gets overloaded from information (via talking, planning, making decisions) or from other stimulation (e.g. noise and/or being with more than a couple of people), and then short circuits and goes into “panic” mode.

So anyway, back to the EEG…my doctor felt pretty sure that most of the symptoms I experience during an anxiety episode are normal.  However, since he thought it was unusual that sometimes  I either completely lose the ability to speak or have difficulty getting out more than a few words, he decided to do an EEG just to make sure there wasn’t anything else causing the issues. So, just to reassure you, this was primarily a  precautionary test (we all expected a good/normal outcome), but since the process was pretty involved and totally new to me, I wanted to share the adventure with all of you. 🙂

EEG Step 1: Cut your normal amount of sleep in half the night before, and abstain from caffeine the day of the test. So yeah..for those of you who know me well, sleep is ESSENTIAL..as in very, very essential. I couldn’t bring myself down to the 4 hours that would have been exactly half, but I did get it down to 5 hours (1 am to 6 am). Poor Ivan stayed up with me for solidarity, which I thought was sweetly touching – and incidentally useful since he was there to wake me up every time i started dozing off before 1 am.

Unfortunately for all of us, my EEG wasn’t until 3:30 pm today, which meant I had to do the sleep deprivation thing, skip my beloved cup of coffee in the morning, go to therapy, and then wait around trying not to fall asleep again before 3:30.

EEG Step 2: Get plugged into the machine.  I had a really nice technician, who used some sort of salty, glue-like thing to attach a fairly large number of wires all around my head and also on my face and neck. This took a decent amount of time, which gave me liberty to wonder exactly how hard it was going to be to get all of that glue back out of my hair, but eventually I got fully plugged in and we were ready to start!

EEG Step 3: Actually do the test. The test itself had several phases, all of which took place in a darkened room (Ivan did get to stay there with me). First, I opened and closed my eyes several times. The next part involved hyperventilating on purpose for 3 minutes (this was rather disconcerting and tiring!) My favorite part came next, which was to fall asleep for 25 minutes. Confession, it probably took me maybe 5 minutes to doze off, but I could tell by Ivan’s heavy breathing he had already been “out” for a bit…talk about embracing the EEG vicariously! 🙂 After this, the tech woke me up for the final part of the test, which involved lots of flashing strobe lights (I got to keep my eyes closed for this part too).

EEG Step 4: Get “unplugged” and head for home…and coffee! And realize the inordinate amount of glue that was still in my skin and hair. For the record, it did come off with a lot of shampoo and hot water!

As with a lot of medical tests, we won’t get the official results for a couple of weeks…but thanks for reading along and “living” this experience with us in the meantime! ❤ 🙂

Yesterday marked the tragic combination of Spring Forward in Daylight Savings Time and my birthday. Besides the joyless task of waking up a whole hour earlier, it was actually a very, very special day. Until now I had thought of 24 as one of those insignificant ages you exist through and gloss over. Until I almost didn’t make it to 24. Now, I’m thankful that the doctors’ initial predictions about my longevity were mistaken, and I think it is a super fantastic age that I am blessed to experience.

And guess what? I got a walker for my birthday!! When I think about birthday wishes from previous years (a violin, a driver’s license, getting into a music conservatory, getting a boyfriend..marrying Ivan) I can assure you that a walker was absolutely 100% NOT on my list, ever. Nevertheless, somehow it definitely did make it on my list for the now-significant age of 24, and like the previous birthday wishes mentioned above, this one also came true! So yes, I actually got a walker for my first “mid-twenties” birthday, and was actually happy about that. While I’m still too weak to leave the apartment unless situated in my old friend the wheel chair, I will now be practicing standing and taking baby steps around the apartment (and looking forward to when this process becomes pain free!). Hello, 24!