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Chapter One: Faith over Fear

This is the post excerpt.

“God may ask you to rise up and lead in ways that will take humility and courage, and Deborah has set the example. But God is with you for every battle you face. The enemy may intimidate you with his strength, but God is able to overthrow him & his schemes.” -Patsy Clairmont.

A year ago, around this time, my health had just taken a drastic turn for the worse. I was completely bed-ridden, unable to eat, unable to shower, unable to do school, unable to babysit, unable to go to church, throwing up consistently, & battling severe abdominal pain. I was enduring test after test, needle after needle, & receiving no answers. It was also around this time God first laid the undeniable call to blog about my journey on my heart, and I replied with a resounding, “no, God! What if no-one reads it? What if I get negative feedback? What if I sound inept and stupid?” The protests went on & on for months….Satan was intimidating me with his lies.

Overtime, every so often, (and in completely unexpected ways) God would remind me of His call, and my protest was always the same. Honestly, I always would naively hope He’d forgotten! (Haha, what a joke, Grace!!) But, as He always does, He won over my anxious heart just a few short weeks ago, an entire year later. Sometimes I forget most people don’t know a fraction of my story. Sure, 90% of my social circle knows I’m chronically sick & struggle a good deal physically, but they don’t know exactly what I have, how its defined, what I’ve gone through, & most importantly, how God has worked through it.

You see, as I was having my quiet time a few weeks ago, I was praying out loud, and I petitioned, “Father, please use me and my experience to point others to You, because if my suffering doesn’t point to You, it is truly for nothing.” Wow. The impact of my words hit me like a massive tractor trailer truck immediately after I said them. “If my suffering doesn’t point to You, it is truly for nothing.” I seriously wonder if God planned that!

So, even as Satan’s lies began to whisper in my ears, I surrendered to the call. The enemy was intimidating me with his strength, but God overthrew his schemes.

I share this because through this blog, I want to tell you my story…the good, the bad, and the ugly. I want to be real and raw. My hope is that through this blog, people can understand these rare disorders better. My hope is this will be a tool to uplift & bless others. My hope is that through sharing what I’ve learned and how God has compassionately shown me His glory as He’s worked in my life, it’ll encourage & speak to even just one single person. Because if I hide my suffering, it is truly for nothing.

 

Chapter Twenty Two: By His Grace & Strength Alone

Looking back, I’m convinced that God knew the exact time down to the minute I needed Dr. Redfield to call me. 

He knew I desperately needed hope like never before.

But, I’m getting ahead of myself.

It was the week of Christmas 2018 when I was officially informed my Left Renal Vein Transposition had failed. Deep down, I’d already known that. My life was still far from normal & the symptoms were undeniable. But there was something about hearing those words spoken out loud by a trusted professional that made it click: my worst nightmare had become my reality.

Merry Christmas to me.

Apologetically, my surgeon informed me he was retiring so this would be our last visit. But I knew full well that even if he hadn’t been retiring, there wasn’t anything more he could do for me. I was now beyond the expertise of UVA’s vascular department.

Oh boy.

I was promptly sent downstairs to an inexperienced, distant doctor who informed me my “only option” was a painful, temporary procedure that often causes more terrifying complications than it does successes. Oh, & I would have to be wide awake for the entire thing. 

Nope.

I walked out of UVA feeling physically & emotionally beaten to a pulp….

……but I also walked out of UVA knowing for the first time that Wisconsin was my next step.

In Chapter Sixteen I wrote a detailed blog post about the hand of God in our Wisconsin journey before it even really began. I shared about the program being put on hold indefinitely right before we were about to send my records, the two months of endless campaigning, the hundreds of letters written on my behalf, & the striking miracles God performed. It’s a crucial part of this story, & I would encourage you to read about it here: https://gracengrit.blog/2018/04/12/chapter-sixteen-grace-grit-gratitude/

But to refresh your memory, my parents learned about the auto-transplant program long before I did. This program is an absolute game-changer for those who battle severe Loin Pain Hematuria Syndrome like I did. The program is very unique, is composed of some of the very best doctors & specialists in the USA (& possibly the world) who have dedicated themselves to helping those who are in my position find relief, provides hope for those who have been told there is none, & offers a very promising chance of finding healing, or at the very least an improved quality of life.

But what is a kidney renal auto-transplant? I’m planning to go more into detail on this in another blog post, but for now I’ll share this: an auto-transplant is similar to a kidney transplant, but I was both the recipient & the donor. I would still have two kidneys, but they would both be in my right side. This meant another major surgery—my second in under a year—but the medical team was impeccable & it had an incredibly high success rate. We were confident this was the best next step for me.

Because Loin Pain Hematuria is so rare, there are very few treatments available, & we had exhausted all our options. We knew that UW was my best & possibly only shot.

I would be lying if I said it was easy to wait. But then again, I don’t think it’s ever easy to wait on God. 😉 I had never wanted anything so badly before in my entire life, & I wanted it immediately. But Jesus was still inviting me into a deeper healing. A healing that can never be stolen. A healing that was not fleeting, but one that would stick with me the rest of my life. A healing that would only continue to deepen my prayer life, increase my faith, & heighten my perception to the miracle.

Because grace always heals deeper.

& when I had learned to pray more fervently & constantly than I had ever prayed in my entire life, to seek God’s hand in the little things like never before, & to surrender to His plan for me instead of my plan for me….I got the call.

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On May 9th, 2018 my amazing Mom & I started the long drive to Wisconsin. No, I wouldn’t be having the surgery on this visit. The purpose of this trip was to meet Dr. Redfield, undergo some tests, & most importantly, have the diagnostic that would determine whether or not I was even a candidate for the auto-transplant. It was a crucial trip, & nerves were abundant. We would be gone seven days….four days of travel & three days in Wisconsin.  We were prepared for a tough trip. My symptoms had hit new heights in the past eight weeks, & we knew traveling would be incredibly difficult on my body. In fact, we weren’t even sure I would be able to make it there. Heck, I had a tough time just driving around town! But we proceeded forward in faith, trusting that God would give us exactly what we needed to make it there & back.

& you know what? The very first toll we hit, the car in front of us paid our toll.

Looking back, I think that was God’s way of showing us He had us in His hands from the very beginning.

& yeah, it definitely wasn’t an easy trip. My Mom had to drive the entire thing herself, & the travel was absolutely brutal on my body. Every morning I woke up incredibly ill, knowing I was in trouble. Due to the pain & nausea, I could hardly stay hydrated, much less eat. These two variables combined with throwing up meant I lost quite a bit of weight. In the seemingly unbearable moments, I would’ve given anything to go home. But despite her exhaustion from the drive, my sweet Momma always reminded me to just take things mile by mile.

So that’s what we did.

After two full, long days of travel we arrived safely in Madison, Wisconsin a full day ahead of schedule.

Yeah, Jesus certainly carried both of us mile by mile by His grace & strength alone.

After a full day to explore the area, rehydrate, & catch up on rest we headed into a packed day of consultations, tests, & the diagnostic procedure. On the drive, I’d gotten a call from the clinic to let me know I should plan on being at the hospital for twelve hours. In addition, I wouldn’t be allowed to eat or drink anything the entire day due to the nature of the tests. This meant in addition to my usual issues, I was guaranteed to be weak & dehydrated. Anxious, I prayed for a strength that surpassed all understanding as I walked into the facility. 

If you’ve read my blog, you know I’ve had several traumatic health experiences & many complications. As a result, it made me really distrust the medical community & extremly apprehensive about going to doctors offices or hospitals. But as soon as I walked into UW, I knew this was where I was meant to be. By the end of the morning, I loved Wisconsin! I felt completely at ease there & genuniely trusted the nurses & doctors. Everyone was so kind & went above & beyond to ensure I was well cared for. I appreciated the way they clearly communicated exactly what they were going to do & explained it in a way that was easy to understand. The nurse practitioner actually gave me a “roadmap” that reminded me of giving a speech….it was definitely my language! 😉

In addition, everyone was actually very familiar with LPHS, NCS, & SMAS without any explanation! They quickly proved they truly are specialists in this department. My expectations were far exceeded. I was blown away. 

By mid afternoon, it was time for my diagnostic….the lidocaine test. First, they would insert a camera through my groin to look around & ensure there was nothing out of the ordinary. Then, they would insert a catheter all the way up to my ureter & kidney. Through it, they would thoroughly coat the area with numbing lidocaine. This simulated how my body would feel without a ureter or a kidney in the left side, thus determining if the surgery would be truly beneficial for me. The idea was if woke up with pain, I likely wouldn’t be a candidate for the auto-transplant. But if I woke up pain-free, I was almost guaranteed the surgery. It was a big test, & everything in me not only wanted but needed to pass it. 

After checking in at the front desk, I was informed I needed to report to pre-op. No, it wasn’t necessarily a surgical procedure. However, it was an invasive one that would need to take place in an OR under anesthesia.  

…..& that’s when my nerves spiked. 

Because even though I was abundantly thankful I was going to be knocked out for the whole ordeal, I wasn’t emotionally prepared to be in pre-op or an OR again. I wasn’t prepared to be hit by a wave of memories. 

I remembered sitting in the waiting room with my parents anxiously waiting to be called back to be prepped for my Left Renal Vein Transposition. I remembered putting on the sterile gown, socks, & hairnet. I remembered getting the IVs placed, talking with the nurses, & meeting each member of the surgical team. I remembered the paralyzing fear I felt as I waited to be wheeled into surgery. I remembered trying not to cry so I could be strong for my parents. I remembered seeing the cold operating room for the first time & the scary tools on the table. I remembered it all. 

But yet, everything felt different in the best sort of way. & when the kind, smiling nurses came back to wheel me to the OR, I felt an odd, inexplicable peace that surpassed all understanding. & as I discussed the news with the anesthesiologist I had a feeling everything was going to be okay. 

 

The next thing I remember is waking up in post-op. I was groggy & confused of my whereabouts, but completely painfree.

Overwhelmed, I started to cry. Immediately, everyone was concerned something was wrong, but it was because for the first time in almost two years, I didn’t have an ounce of pain. They were tears of joy. 

That evening I ate a full meal, walked without hunching over, & had my best night of sleep in years. We woke up early the next morning & headed back to UW for my scheduled CT scan & consultation with Dr. Redfield to find out whether or not they would offer me the surgery. I admit, I was anxious of the unknown, unsure of what this day would hold.

But as He had always been, God was oh so present in every detail of that day from the very beginning.

It was around 7:45am, & I was still pain free. I had just been taken back to the CT scan waiting area to drink my required gallon of water (yes, an actual gallon) & get my IV placed. It was just me, a woman, & her husband in the waiting room.

Out of the corner of my eye, I noticed the man pull out a Bible & begin talking with his wife about his ideas for the Bible study lesson he was going to teach that Wedsnesday evening. It was a beautiful Bible. I don’t think I even realized I was saying the words out loud, (I’m not super brave with that kinda thing) but I complimented him on it. They smiled at me & started telling me about how they spent hours together tediously placing tabs & such. I loved their idea & told them I would love to do that with my Bible someday as well.

After that, I didn’t say anything else so I wouldn’t bother them too much, but then he offered to read the Bible out loud so I could hear it too.

Wow. I see you, Lord.

There was no adequate words to describe what a divine God moment that was for me. It was a perfectly timed reminder of His presence in every aspect of this journey. An amazing reminder of His promises as I was about to go into another long, scary day.

As I walked into Dr. Redfield’s office the next morning, I was sure of two things. One, that Jesus is ever so faithful. & two, that I had lived twelve glorious hours completely pain free, & now I was ready to live the rest of my life pain free….whatever it took.

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Chapter Twenty One: When God Says No

“Waiting is not just about what I get at the end of the wait, but about who I become as I wait.” – Paul Tripp.

My Left Renal Vein Transposition surgical recovery was brutal. 

After spending six days in the hospital, I was absolutely thrilled to be going home. I loved being in my own comfy bed surrounded by my loving family. I was thankful for every visit, meal, gift, card, & prayer from our phenomenal support group. But I was beaten to a complete pulp physically, emotionally, & spiritually. 

I was extremely weak. I could barely leave my bed to use the restroom, & short showers took everything I had. My daily walks to prevent blood clots felt impossible even though they were only to our lamppost right outside our front door. I had no appetite. Just about everything I ate caused extreme nausea and/or vomiting. I was terrified of throwing up because of the shooting pain it sent through my raw, bloody, freshly sliced abdomen. Speaking of, I couldn’t even look at my incision. Simply the thought of it caused me to gag. When my Mom would clean it/apply fresh dressings I would close my eyes or hide under a pillow until she was finished.

The seizures I’d experienced in the hospital were the first of several complications. Within just days of being home, I had an extreme reaction to blood-thinners that made me quite anemic. I was pale, shaky, & covered in bruises with dark rims under my eyes. On July 5th, I was spontaneously rushed to UVA’s Emergency Room due to my severe anemia & a very alarming pain attack. After undergoing bloodwork & a CT scan, they found a large hematoma, which is basically just a solid ball of clotted blood. While it was nothing too serious & quite common after major surgeries, it was compressing the vein they’d just transpositioned, causing extreme discomfort & nausea.

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To top it all off, the surgery I’d undergone to relieve my pain only ended up worsening it. “Excruciating” was redefined to an entirely new level. 

Needless to say, the girl who’d blown people away with her resilience, strength, courage, positivity, & trust in God wasn’t in a fantastic frame of mind.

You see, this was the kind of brutal that makes you question why in the world you signed a consent form giving this hospital permission to put you through this hell. This was the kind of brutal that made you hate yourself for doing so. This was the kind of brutal that drains every last ounce of life out of you. This was the kind of brutal that hardly let you smile or laugh….the kind of brutal that makes you question God.

I felt like I’d been robbed of every last ounce of joy, laughter, & light I had left.

Social Media wouldn’t hear anymore about my health until December 2017. Around the end of July things started to look up! At least, I didn’t feel like a dead woman walking. 😉 My headaches were completely gone, my incision began to heal, I stopped throwing up, we got my anemia under control, my hematoma dissipated on its own without medical intervention, & even my pain began to ease. Over the next five months, I chose to only share happy things on social media: my first post-surgical outing with Dad & Hannah, dinner at Olive Garden with Aunt Tracey, a fun visit from dear friends in North Carolina, time spent outside with Luke, a pedicure with Aunt Krista, joining Mary Kay under my Momma, our Mary Kay fundraiser, starting a blog, family photos at the Lavender Farm, senior pictures, homecoming with Hannah, & a Thanksgiving girls day.

Because I wanted some privacy & a break from health questions/discussions, (& because I simply wasn’t emotionally ready yet) social media wouldn’t hear that my symptoms had begun to flare-up for the third time around mid-August….as soon as we’d stopped pain medication. They wouldn’t hear about the continual battles with severe thigh, back, abdomen, chest, & head pain. They wouldn’t hear about the constant battles I fought with nausea, dizziness, fatigue, premature fullness, weight loss, etc. They wouldn’t hear that I was still on bedrest more often than not.  They wouldn’t hear about my scan & consultation with my surgeon in September due to the lack of improvement.

Yeah….we were still in the journey.

When I decided to have major surgery, I knew there was a 50% chance of success. I also knew there was an equal possibility of failure, but I hadn’t allowed myself to go there, to really think about the chance of it not working. Why? Because I’d just gone through hell for the sole reason of regaining normalcy, & I desperately needed it to be worth it.

But God had said no.

& just like that….we were back in another season of waiting.

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“How long, O LORD? Will you forget me forever? How long will you hide your face from me?” (Psalm 13:1)

Waiting can be torturous, can’t it?

We live in a world of instant gratification. We hate waiting, & want everything done immediately. Traffic, long lines, & even walking behind someone slower than you in the grocery store can rock our world. Then there are bigger things like relationships, finances, & health. When we don’t get answers when we want them, it can prompt irritation, frustration, & even hopelessness.

As a perfectionist, (& as a human being, honestly) it’s always the most difficult for me to wait when I don’t know what the outcome is going to be. Obviously, I want to know all the answers & I want to know they won’t hurt. I want a guaranteed positive outcome. It doesn’t matter if it takes time…as long as I know when/how it’ll be okay.

But God doesn’t always work that way. In fact, He rarely does. He works on an entirely different timetable, & to Him there’s nothing wrong with waiting. As a result, oftentimes it feels like God is dead silent & I’m left feeling anxious, discouraged, confused, & flat-out scared.

Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised.” (Romans 4:20-21)

To be perfectly honest with you, I read this passage & think, “DUH!!” Abraham didn’t waver because he already knew what was going to happen…he would have descendants to number the stars! He had assurance of the outcome. I mean, if I knew the future with a solidified guarantee I’d be content in waiting too. 😛

But Abraham was human too. Sometimes he still doubted, especially as he got older in age. He was impatient & self-reliant at times. In fact, he even tried to fulfill God’s promise himself through Hagar.

But as his story teaches us, “something actually happens while nothing is happening. God uses waiting to change us.” -Jade Mazarin.

Vaneetha Risner says, “while Abraham was waiting, God was working. Molding his character. Teaching him patience. Building their friendship. It was in that twenty five year wait that Abraham got to know God intimately. It was in those seemingly wasted years that God transformed him. & after decades of waiting, Abraham was ready for the supreme test of his faith, when he was asked to sacrifice Issac, the son of promise. The son he had waited for.”

You see, Abraham didn’t waver because he already had assurance of the outcome….he didn’t waver because his faith wasn’t found in God’s promise of descendants. If it was, he never would’ve taken Issac up on that mountain. No….Abraham’s faith was deeply rooted in the trustworthiness of God, the knowledge that God could fulfill His promise in any way He saw fit.

Abraham could risk it because his faith wasn’t in the promise alone. It was rooted in the Promisor. He wasn’t holding onto the promised outcome. He was holding onto God.” -Risner

I thought I’d learned the lesson of waiting. Lol, Grace. I definitely hadn’t mastered it yet. Heck, I still haven’t. Jesus can definitely teach you the same thing over & over again as many times as it takes. But you know what? Every minute of life isn’t always going to be a great spiritual awakening. God doesn’t always reveal Himself right away in grand, clear, undeniable ways. Sometimes, He leaves you waiting. Sometimes, He makes you look for the sweet, beautiful subtleties in the story. But even when you can’t see it, that doesn’t change the fact He is always in it weaving a greater story. 

That season of waiting was slow, uncomfortable, & hard. Sometimes, I didn’t open my Bible for a month. Sometimes, my prayers were more like angry rants. Sometimes, my heart felt dead. Sometimes, I felt like I was talking to a wall. Sometimes, I felt angry, bitter, & hopeless.

But that season of waiting strengthened my faith, reminded me of God’s ways, made me more attentive to His voice, deepened my relationship with Him, solidified my trust in the Author, & played a major part of shaping me into the woman of Christ I am today. It reminded me that God can provide anything I need just as He sees fit in His perfect will & timing.  It reminded me to take a deep breath, release my clenched hands, & trust that God is good at being God.

But arguably most importantly, it reminded me that waiting is one of the most precious gifts God can give us, because it teaches us to cling to Him rather than the outcome.

& I would desperately need those reminders in the months to come.

“God knows what I need; I do not. He sees the future; I can not. His perspective is eternal; mine is not. He gives me what is best for me when it is best for me.” Vaneetha Risner.

Chapter Twenty: God Amnesia

You may say to yourselves, “These nations are stronger than we are. How can we drive them out?” But do not be afraid of them; remember well what the Lord your God did to Pharaoh & to all Egypt. You saw with your own eyes the great trials, the signs & wonders, the mighty hand & outstretched arm, with which the Lord your God brought you out. The Lord your God will do the same to all the peoples you now fear.” (Deut. 7:17-19)

The very first thing I remember after waking up from surgery was pain. Excruciating, white-hot, unendurable, agonizing pain. The worst pain I have ever experienced to this day. I woke up from the four hour surgery with a full, eight inch abdominal incision that hadn’t been there before. I was in a foreign, dimly lit recovery room with a nurse who was a stranger, & pain medication that hadn’t been properly adjusted yet. I was definitely feeling the repercussions hardcore. Almost immediately I realized that both my parents were there with me & although I couldn’t communicate it I immediately felt a comfort by their presence coupled with the frustration that I was unable to communicate with them the amount of pain I was in or that I desperately needed someone to fix it now.

Actually, I was basically completely out of it for a few weeks after my surgery. The combination of my first major surgery, the anesthesia, the high doses of drugs, & the reactions I had to those drugs made me largely lethargic & disconnected. In fact, I don’t remember much of what went on during my hospital stay as a whole. I couldn’t recap it to you moment by moment. But ironically, I remember the complications, the toughest, scariest moments.

I remember the nurse coming into my hospital room in the middle of the night to inform my Mom & I that they’d removed my catheter (that they’d placed during surgery) prematurely & now they needed to place another one immediately. I remember it took three different nurses countless, fruitless tries to get another one in over the course of several hours & the pain that ensued during it. I remember throwing up non-stop through the night (despite the thick suction tube they’d also placed nasogastricly in surgery to prevent that very thing from happening) & the fear coupled with that. Fear because throwing up is already dreadful, but imagine throwing up with a fresh, raw incision down the length of your abdomen. 😳 I was terrified of the slashing pain that occurred every.single.time I threw up but also because I couldn’t stop & I was scared the violent convulsing would split my incision open. I remember itching all over from the dilauded, frequently hallucinating things that seemed so real, struggling to communicate with those around me, crying because I hurt like never before, & trying to get out of bed with everything I had to walk or use the restroom only to collapse back into it completely exhausted after just a few minutes. I remember really wanting to just go home & fighting like heck to get through one minute, one second at a time because that was all I could do. That was all I had in me. 

I remember the day the splitting back pain started just a few days after my surgery. I remember it continued to climb throughout the day until I completely lost control over my body & the paralyzing panic that comes with that. I started to pseudo seize for the second time that year, but these were much more extreme. They were a completely different level of intensity. My back would grow very stiff & start arching until it couldn’t arch any further. My heart rate would spike anywhere from 180-200, I would start to tremble, & my eyes would roll back into my head. I was unresponsive to everyone around me, physically unable to communicate. The small, shared hospital room was completely packed to the brim with medical professionals from several different departments trying to figure out what was going on. I had an “episode”, as they called them, every few minutes….almost constantly over the course of several hours.

I just wanted them to stop. I needed to them to stop. I was feeling frustration that I was in a hospital yet not receiving help or relief, panic that they wouldn’t stop, & helplessness that I couldn’t control my body or verbally communicate with those around me. Especially my Mom. Because I knew she was really scared for me & I wanted to look her in the eye, smile at her, & reassure her that I would be okay…this would be okay.

But I couldn’t.

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A lot of people, in an effort to encourage me, smile & say, “someday soon, you’ll be able to forget this ever happened.” & every single time, I smile back, & declare with confidence, “I never want to forget.”

Because it’s true. I never, ever, want to forget. No.matter.what.

I know. As usual, I sound crazy. But I don’t care.

I’ve been reading the book of Deuteronomy lately. Now I admit, I didn’t wake up one morning with a burning passion to read Deuteronomy (it’s not really one of those books most Christians get super excited to read 😜) but I definitely felt led by God to spend my daily Bible time there, & I am so glad I listened to the call.

In a sense, Deuteronomy is almost Moses’ “farewell address” to Israel before transferring leadership to Joshua. In it, Moses urges the people to trust & obey, while constantly reminding them of God’s faithfulness, uniqueness, power, & promises.

I think we tend to be fairly quick to judge the Israelites. We read about them in our Bibles, listen to their complicated, messy story being shared from the pulpit, hear about their failures, & automatically think of them as a prime example of what never to do. They whined, complained, frequently turned their backs on God, served idols, feared many things, & challenged God’s promises. Personally, I know I’ve judged their lapses of trust/faith, their foolish wanderings from God, their failure to obey His commandments & statues, & their constant doubt of God’s sovereignty, & faithfulness. I’ve condemned them more times than I can count. I mean, come on! God brought His chosen people out of slavery in the land of Egypt, parted the Red Sea, & they walked through it on dry land. But then, just a few months later, they complained about not having food to eat. They even went as far as to say, “would that we had died by the hand of the Lord in the land of Egypt, when we sat by the meat pots & ate bread to the full, for you have brought us out into this wilderness to kill this whole assembly with hunger!” (Exodus 16: 3) So, God sent manna from the sky for them to eat to the full. Shortly after that, the Israelites complained yet again of thirst, implying yet again that God had delivered them from slavery to the wilderness just to kill them. Don’t you just want to shake them & remind them, “our God just parted an entire sea for you! Why do you continue to test Him?! Trust Him!!!” 

But then I remember that when it comes to remembering God’s faithfulness, I too can be especially forgetful. I, too, have “God Amnesia.” You see, the hard truth is, we are definitely more like the Israelites than we care to admit.

It’s been a little over a year since my Left Renal Vein Transposition, & so much has changed. As I’m writing this, I have found almost complete healing. I’m no longer living with chronic pain. I am on my way to living a normal life, preparing to start work again very shortly, doors of opportunity are being re-opened, & God has given me the gift of a wonderful relationship. The light at the end of the tunnel is getting closer & I am truly joyful! 

But despite that, my life still isn’t perfect. It still isn’t “easy.” It’s definitely not “permanently fixed.” There are still trials, attacks from the enemy, discouragements, & broken moments. I still cry, I still grieve, I still become overwhelmed with the brokenness of this world.

I’m still human. 

In both the hardest & easiest moments, it can be really easy to forget everything that Jesus has done in my life. It can be easy to forget the wonders, marvels, & miracles I’ve seen with my own eyes the past few years. It can be easy to forget His glory & majesty. It can be easy to forget how far He’s brought me, how He revealed Himself to me, & the works only He could’ve performed.

A few weeks ago I was sitting in my favorite chair in the peaceful solitude of my bedroom reading my Bible (when I didn’t really want to at all, might I add!) when this verse jumped out at me:

Only be careful, & watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live. Teach them to your children & to their children after them. (Deut 4.9)

& it hit me yet again, like a ton of bricks.

Why, despite everything I’ve learned in the past few years, despite every way God has clearly shown me His majesty, do I still doubt Him? Why do I still fear the future? Why do I question that He is enough in me to make me enough? Why do I hesitate that I can do all things in Christ alone?

Why do I continue to question both the Master & the Masterplan?

Because as someone very wise continues to patiently remind me, “God has brought you this far, through this much. He’s definitely not going to abandon you now.”

“Then I said to you, “Do not be terrified; do not be afraid of them. The Lord your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, & in the wilderness. There you saw how the Lord your God carried you, as a father carries his son, all the way you went until you reached this place.” (Deut. 1:29-31)

In the same way that Moses challenged the Israelites not to be afraid of anything that was to come, no matter how terrifying or impossible it may seem, my Heavenly Father used that very same passage to challenge me. He used it to remind me that He always goes before me, He always fights for me. Just like He’s always done the past few years before my very eyes.

So you know what? I never want to forget. I don’t want to be like the Israelites. 

I want to remember the selfless, compassionate way my Mom stayed with me 24/7 in my cramped, uncomfortable hospital room that entire week….lovingly encouraging me & taking care of me. I want to remember the way my Dad stayed overnight the day of my pseudo seizures, sleeping in a hard, uncomfortable chair & always tenderly making sure I was covered with a blanket. I want to remember the exceptional way my favorite nurse ever (who was quite possibly an angel from heaven) cared for me & the blessing it was to be in her presence…even for a short time. I want to remember the love, support, help, & care our family received from precious adopted aunts, friends, & family that week…who came to give my Mom rest breaks & let me know I was loved.

 

I don’t necessarily want to remember the pain, the discomfort, & the fear, but how God carried me through it. I don’t necessarily want to remember that entire week of hell, but how God provided exactly what I needed to get through each moment of each day by His grace & strength alone. 

Most of all, no matter how “easy” or downright difficult my life is from here on out, I want to remember the awe-inspiring miracles, the seemingly unmovable mountains moved, the incredible wonders, the breathtaking marvels. I want to remember what He’s mercifully taught me, the indescribable ways He’s molded me into the woman of God I’m meant to be, patiently grown me, & tenderly drawn me closer to Him. I want to remember the unique ways He’s revealed His glory, the beautiful times I’ve fallen on my knees in awe of His faithfulness, goodness, & promises.

I want to remember everything–both great & small.

I don’t know where you are today or what you may be going through, but I can promise you this. God has not forgotten you. You are never alone. He is always holding you, protecting you, loving you, strengthening you, & calming you. Just as He’s gotten you through various difficult times before, He’ll get you through this too, if you let Him. Because if you do let Him, just as Moses promised, “the Lord your God will keep his covenant of love with you, as he swore to your ancestors. He will love you & bless you.”

“Has any god ever tried to take for himself one nation out of another nation, by testings, by signs & wonders, by war, by a mighty hand & an outstretched arm, or by great and awesome deeds, like all the things the Lord your God did for you in Egypt before your very eyes? You were shown these things so that you might know that the Lord is God; besides him there is no other.” (Deut. 4:34-35.)

 

Chapter Nineteen: Counting Your Blessings

“Weeping may tarry for the night, but joy comes with the morning.” Psalm 30:5

My surgery date was originally set for June 12th, 2017. When UVA called to let me know that was the earliest date they had available, my very first thought was, “but can I make it until then?” At that time, my situation was the worst it had ever been. The pain–even with medication–felt unbearable. June 12th felt like an eternity away, but I knew I had no choice but to make it until then. Just a few days later after discussing various circumstances, we changed the date to June 22nd….adding ten additional days to the wait time. Honestly, it felt impossible. 

But the months, weeks, & days absolutely flew. In fact, it went by too quickly, & by the time the beginning of June arrived I was grateful for the extra ten days. & just like that it was just a week before my surgery, & honestly, I wasn’t handling it nearly as well as I let on or nearly as well as I wanted. It was the thought of being completely open & exposed on a cold, hard operating table with my body in the hands of someone I had barely even spent 15 minutes with, the apprehension of the unimaginable pain I knew I was about to endure, the fact I would have to stay in the hospital (my most dreaded place) for an entire week that provoked it all. The mixed emotions were very real. On one hand, I was scared, nervous, tense, discouraged, & a total mess. I laid awake at night sweating as my heart pounded a mile a minute. I wept frequently with a broken heart. I had nightmares where I would wake up petrified & panic attacks that would lead into borderline pseudo seizures. Satan was attacking at all angles…physical, emotional, & spiritual. I never actually considered taking my life, but the thought of dying in surgery didn’t scare me at all. In fact, I welcomed it. The idea of meeting Jesus face-to-face & experiencing total healing was one I prayed for sometimes.

I simply didn’t know if I could do it…….

……….but I knew I had to.

But on the other hand, I had peace about it. It probably doesn’t sound that way from what I described above, but I did. I knew without a shadow of a doubt that this was my next step. I knew this surgery was the best decision I could’ve made at that time. I knew I was as ready as I could be. I knew I had prepared myself for the worst while hoping for the best. & deep down, I knew that even though I didn’t have this, God had it. I knew He would be holding me, strengthening me, protecting me, comforting me, & loving me through the entire ordeal, no matter what. 

So with that in mind on June 19th I put my earbuds in, grabbed my favorite blanket, settled in on my bed, opened my journal, & started writing the straight up truth: 

“Today it finally happened. I let go. The peace I’ve longed & begged for has arrived with crazy joy. I believe I can do this for the very first time. I will have faith over fear & I will fight. I will praise God even as I go through hell. Because God is still faithful. He is still reigning. Many have prayed with me & for me. Blessings have been showered continually. Whether on earth or in heaven this will pass. This is only a season. Jesus, you know my thoughts & feelings towards this surgery. You know each fear, anxiety, & frustration. I’m surrendering it all at the foot of the cross, leaving it there, & walking away. All I have to say is whatever comes my way I will praise You…running to You & not from You. Thank You that You are merciful, loving, kind, omnipotent, ever present, & so much more. Thank You that You will hold my hand, comfort me, & grant me a divine peace. Thank You that You are greater.”

Okay, so, I’m going to pause for a second to clarify I didn’t just magically wake up on June 19th with a complete mindset change ready to write that journal entry about my new found peace & joy. It didn’t didn’t just happen overnight. So, how did I get there? I had to make a conscious (okay, maybe begrudging is a more accurate adjective! 😜) decision to count my blessings.

I’ve been told to “count my blessings,” countless times. & you know, I try really hard to do that. I really do! But the unfortunate truth is, we’re human, & counting our blessings just isn’t exactly our natural instinct. It’s a lot easier to count your miseries. 😂 We are prone to dwell on the bothersome roadblocks in our day rather than the little rays of sunshine. But they’re called “miseries” for a reason….they make us feel miserable! & whether we realize we’re doing it or not, it’s too easy to get trapped in a cycle of dwelling on them continually & allowing them to completely dominate your thoughts. & that’s exactly what I had been doing. 

So I chose to actively & deliberately count my blessings.

Now, let me clarify that I didn’t choose to count my blessings as some positive thinking facade or a way to “mask my real feelings.” I chose to do it as a sign that I was going to steadfastly trust my Heavenly Father no matter how difficult the circumstance. I decided I was going to seek out the daily blessings, actively thank Him for them, & see what happened. Rather than lingering on what I’d been missing, I chose to focus on all I’d been given. & I gotta admit, I did not feel an overflow of pure joy & peace immediately at all. In fact, in the beginning, it felt like a mundane chore, an inconvenience, an annoying act of obedience due to my “Christian duty” more than anything. But the more I rerouted my focus, over time something started to change in me….even if I didn’t notice it right away. Space began to open up in my heart. I truly felt happier, freer, more open, contented. & as a result came that journal entry on June 19th. 

In the wise words of Vaneetha Risner, “when I choose to face my miseries directly & find blessings in them, something miraculous happens. I view all of life differently. I see my circumstances through a lens of faith. & I am able to declare with confidence that, even in the worst of circumstances, God is still good, & there is much to be thankful for.”

Would I have chosen this path for myself? Never. Did I want to walk through hell? No way. But in those sweet moments, I was opening my mind & my heart to see my journey from different angles, different perspectives, through a different lens. I could see God working in me in ways I couldn’t before. I could see Him using me in ways I couldn’t before. I could see Him providing for my needs in ways I couldn’t before. I could see Him  I was grateful for all He had done in my life in ways I hadn’t been before.

& no matter how seemingly impossible my day seemed, I could always cling to this: the One who holds the world, the One who conquered all, loves me recklessly & unconditionally. & that is absolutely something to be grateful for. 

& you know, some might argue that those feelings didn’t last. Admittedly, I did panic the night before my surgery. Satan knew he hadn’t won the battle for my heart & attacked hardcore with his fears & unknowns. But again, God was faithful to provide for my every need. He led me to call three amazing friends who patiently listened to me cry & be real about how I was feeling. They selflessly & willingly distracted me from my emotions, encouraged me, & prayed with me until the wee hours of the morning. & when I wasn’t on the phone, I was listening to worship music…allowing God’s promises to ring louder, clearer, & stronger than Satan’s venomous lies. 

All too soon, my alarm went off & the moment had come: it was time to get out of the comfort & safety of my bed, into my last shower with an unmarked body, & into the car to make the trip over the mountain to the UVA surgical department. & you know what? I would’ve thought that would’ve been my toughest time emotionally.

But it wasn’t.

I got into the backseat & I felt an immediate, inexplicable peace that surpassed all understanding. Words fail to describe it. I smiled & sang the entire way to UVA. I sang lyrics like,

“Whatever my lot, thou hast taught me to say, it is well with my soul.”

“I need Thee, oh I need Thee, every hour I need thee.”

“Be Thou my Vision, O Lord of my heart. “Naught be all else to me, save that Thou art”

“Come, Thou Fount of every blessing. Tune my heart to sing Thy grace”

& the absolutely crazy thing is I meant them.

I believed every word I was singing to heaven. 

In reality, I had no earthly idea what I was walking into at on June 22nd, 2017. I had no idea that it was going to be worse than my worst fears. I had no idea the level of excruciating pain I was about to experience. I had no idea the complications that would ensue. I had no idea the hell I was about to walk through. I had no idea my faith was about to be tested like never before or that for the first time I would want to run away from God. I simply had no idea.

But I had made a promise to Him in that journal entry. I had promised that whatever came my way, come hell or high water, I wasn’t going to run from Him. No matter what.

& I was going to keep that promise.

Lol, Satan. Jokes on you.

So despite those unknowns, I walked into UVA with peace & joy & it did not waver. It stayed as they started placing the IVs. It stayed as I underwent surgical prep. It stayed as I met with countless doctors who explained in detail what was about to happen. It stayed as I looked my parents in the eye & told them goodbye. It stayed as the nurses wheeled me away to the OR. & it stayed as I laid on that foreign operating table surrounded by scary looking surgical tools & masked strangers. & there is no other explanation for that than God & God alone.

& as they started injecting the anesthesia & asking me to count down from ten, it still stayed. & my last thought before I succumbed to deep sleep was, “here I am God. I’m trusting you.”

& thus the journey began.

 

Chapter Eighteen: I Have Thanked Thee For My Roses…

“My God, I have never thanked You for my thorn. I have thanked You a thousand times for my roses, but not once for my thorn. I have been looking forward to a world where I shall get compensation for my cross; but I have never thought of my cross as itself a present glory. Teach me the glory of my cross; teach me the value of my thorn. Show me that I have climbed to You by the path of pain. Show me that my tears have made my rainbows.” –George Matheson.

May & June of last year were honestly two of the most difficult months of my health journey. There were definitely a lot of mixed emotions. Dr. Cherry, my vascular surgeon at UVA, had officially offered to perform a Left Renal Vein Transposition Surgery. My current diagnosis was Nutcracker Syndrome, which is caused by a compression of the left renal vein (that carries blood purified by the left kidney) between the Superior Mesenteric Artery & the abdominal aorta. Because of the severity of the compression, my blood flow had been compromised which made it very weak. Often when it couldn’t go where it’s supposed to go, the blood found alternate routes, causing spinal congestion, midline congestion, & pelvic congestion in addition to causing my chronic pain + other symptoms. This surgery was an opportunity to permanently fix that. The transposition would move the vein to where it would no longer be compressed, allowing it to flow openly & therefore hopefully solving my problem.

At this time, we were still very new to the health game. These syndromes are so rare, it’s incredibly difficult to find accurate information regarding them & the few treatment options there are. This was completely uncharted territory for us. At that time, with the information we had, knowing what we knew, this surgery seemed like the very best next step for me. We were beyond grateful to God for Dr. Cherry’s willingness to offer me the surgery, as it was definitely not something he did often. You only know what you know.

However, there were a lot of variables to consider, & they were scary ones.

  • It is one of the rarest surgeries performed in the United States. Dr. Cherry was the best at it on the East Coast, although he had only done about ten in his entire career. We were incredibly blessed to be located so close to him & UVA, as some people actually would travel from as far as Texas just to be under his care.
  • It is a major surgery….full open abdominal. I would be cut from the base of my sternum to right above my pubic bone. This would mean permanently altering my body, learning to live with a huge, jagged scar. It would be roughly four hours lying completely open in the OR, two days in the ICU, & 5 days admitted to the hospital. For me, this was one of the most concerning aspects of all. I had already had so many traumatic experiences in hospitals, & had had an extremely difficult time staying even just a night or two. I couldn’t even fathom being able to last an entire week.
  • The recovery is quite intense. There were obviously risks, as there are with any surgery….but especially with operating so close to a major artery. There was a real possibility they would have to cut into my thigh as well to graft a vein, which would complicate an already difficult recovery. We hoped with me being tall my vein would be long enough to stretch to where it would be relocated, but we knew it could have to be done, nonetheless. I was told it would be 3-6 months before seeing any improvement in my symptoms, & a year total before I would be fully recovered.
  • But the biggest unknown, the most terrifying variable was the fact this surgery was not a guaranteed fix. There was a huge risk. It was a 50/50 success rate. Dr. Cherry had had half of the surgeries work, & half of the surgeries fail. 50% chance it would be successful & I would find the healing I so desperately longed for. 50% chance it would fail & I would’ve gone through all of that agony just to be right back where I was before, & with a huge scar to boot. The very thought of the latter happening was enough to paralyze me with anxiety.

But despite all of this, looking back I realize the truth is it wasn’t even really a decision at all. After all the fun activities of April, you could say I started my 18th year off with a bang. 😉 My body completely crashed. It was maxed out from everything I had put it through, the strain of me pushing so hard through the pain. Just a few days after my 18th birthday party I had a severe pain attack coupled with dehydration & ended up at our local ER, the UVA ER, & finally after all that, a consultation with Dr. Cherry. It was a huge wake up call for all of us, including him. & as soon as he walked into the consultation room, looked me in the eye, & informed me he would be willing, I knew I was going to do it…whether I admitted it to myself at the time or not. Because for the first time in awhile I actually had options. I actually had a way out.

I could either:

  1. Go for the “safe” route & opt against the surgery. But this would mean living in my current state for who knew how long & my current situation was hell. In fact, one of my journal entries from May reminds me of just how insane the situation was. “My sickness has really escalated. I’m in so much pain almost all the time. I have pain in my left thigh, spine, left & right abdominal, groin, & under my ribs. I’m so tired all the time. I feel like I’m living from my bed. But is this really living? Lately the pain hasn’t been suppressed by the medication, & I deal with intense side-effects. I haven’t been able to go out & it drives me insane. I daily battle doubts that I’ll make it. The surgery is so far away.” The simple fact was I wasn’t even sure I could make it to the end of June till my surgery date, much less an indefinite period of time. That in itself told me everything I needed to know.
  2. I could take a terrifying leap of faith, gather every ounce of courage I had, & pray like I had never prayed before that I would be in the 50% success rate. & despite the unknowns, I truly believed that because I had already gone through so much if I did this God would reward me & my trust in Him. I believed He would help me find healing. I believed this would be it. Because I desperately needed this to be it. Because I needed to find healing as soon as humanly possible. & I was willing to walk through hell one last time to get to the light at the end of the tunnel. Whatever it took.

So I talked in-depth with my parents, thought it through, & prayed my heart out. & just one week later….I decided to have crazy faith & take the risk. I had to try.

But it was anything but easy. Truthfully, I was absolutely terrified of what I was about to endure. Petrified of the unknowns. Frozen in fear. My darkest thought was, “maybe something will go wrong in this surgery so I won’t come out & this will all be over.” I was petrified that this–my seemingly one & only shot–would fail. I was desperately crying out for someone to help me in the way I needed to be helped yet not communicating my needs out of fear of judgement or condemnation. I felt like so many people were looking to me to be strong & to fight but I was just surviving & that was taking literally everything I had.

Bottom line….I was scared out of my mind.

Because of my fear of leaning on others, I did the only thing I knew to do: lean on God. Even when my heart felt nothing & it felt like I was talking to a wall. Even when I didn’t have the strength to pray out loud. Even when all I could do was ask “why” as tears streamed down my face. Sometimes that was all I could do, & even if I didn’t know it at the time, that was okay. 

One afternoon in early June, I was sitting at my desk having my time with Jesus. I opened my devotional to the designated chapter of the day, “When the Pain Never Ends.”  Immediately–simply based on the title alone–God opened my eyes, heart, & mind. “Daughter, surrender your heart to Me. I am about to teach you something very, very valuable…something you’ll cling to for the rest of your life. One of My most important lessons yet. Trust me.”

I knew something life changing was about to happen.

I start to read & instantly feel my heart begin to awaken. & then comes the transformation, the revelation, the secret, the miracle. “My God, I have never thanked You for my thorn. I have thanked You a thousand times for my roses, but not once for my thorn. I have been looking forward to a world where I shall get compensation for my cross; but I have never thought of my cross as itself a present glory. Teach me the glory of my cross; teach me the value of my thorn. Show me that I have climbed to You by the path of pain. Show me that my tears have made my rainbows.” –George Matheson.

I’m sitting there at my desk in the quiet in my chair with my lavender candle burning & the taste of my favorite tea lingering on my tongue just like any other day & it hits me like a bolt of lightening.

The crushing, scary, raw truth is this: in this life there are some trials in which the pain never passes. There will be ongoing, heartbreaking struggles that grind away at us. Chronic illness. A broken marriage. The loss of a loved one. A broken dream. Depression. Unfulfilled longings. A miscarriage. It’s so easy to wish them away, to fantasize about what life would look like without them. It’s easy to believe the lie that if just this one thing was different, you would be able to handle everything else no problem. I know because I’ve done it.

But I’m learning that these struggles, this pain that never ends, is a gift wrapped in black. I’m learning the value of suffering. Because these trials are the ones that shape me into the woman I am today, mold my character, draw me closer to Jesus, & enable me to see His glory. So despite it, I have made it my life mission to always, always thank God. But that’s when it hits me….I have thanked Him for my roses, but not my thorns. You see, I have thanked Him for His presence, His hand upon my life, the ways I have seen Him work. I have thanked Him for the various blessings despite the pain. I have thanked Him for His grace, comfort, & sustaining power in the trial.

But I had never thanked Him for the health journey itself. I have never thanked Him for these trials in which the pain never passes. Not one time.

Because in the words of Joni Eareckson Tada, “maybe this wheelchair felt like a horrible tragedy in the beginning, but I give thanks to God in my wheelchair….I’m grateful for my quadriplegia. It’s a bruising of a blessing. A gift wrapped in black. It’s the shadowy companion that walks with me daily, pulling & pushing me into the arms of my Savior. & that’s where the joy is. Your wheelchair, whatever it is, falls well within the overarching decrees of God. Your hardship & heartache come from His wise & kind hand & for that, you can be grateful. In it & for it.”

So with my heart bowed low, my hands held high, my legs shaking, & tears in my eyes, I took a deep breath, gathered every ounce of strength & courage I had, & for the first time ever I thanked God for my thorn. 

& I immediately felt the weight of the world lifted off my shoulders. I immediately felt a peace that surpassed all understanding gently wash my fears, doubts, & anxieties away like a beautiful, redeeming spring rain. I immediately felt the arms of God providing the comfort I had been seeking all along.

& I took a deep, life giving breath in, slowly let it out, & for the first time in several weeks, allowed myself to really, truly smile.

Because for the first time in several weeks, I felt free. 

That seemingly normal morning in June changed my life, my faith, my perspective. It taught me to view my cross as a present glory. It taught me the value of my thorn. It taught me that my tears are making my rainbows. But most importantly, it reminded me that I am climbing to my Father by this path of pain. This seemingly never ending pain is only temporary. It will end someday, whether on earth or in heaven. So for now, I am allowing this precious pain to push me into the arms of my Heavenly Father who loves me with a reckless, passionate love, & is faithful to provide His dreams for me. My gift wrapped in black. & I will always not only thank God in it, but for it.

 

 

Chapter Seventeen: Doesn’t Love Run to Help?

“A greater understanding of who God is, what God is like, what He doesthat was God’s revealed glory, not a brilliant flash of light or some undefined ecstasy.” -Vaneetha Risner

I’d undergone my next step–a gastro emptying study–at the beginning of April & compared to previous tests, it wasn’t too terrible. Basically, I ate two pieces of toast & three eggs that had nasty contrast dye cooked into it (so the machine could track the food processing) & once an hour I would be escorted to & from the waiting room by a nice radiology guy (I wish I remembered his name!) & talked about his afternoon plans & how unfortunate it was I had to do this at such a young age (Oh, radiology guy, if you only knew…) & then I’d spend two minutes in the scanner. The test as a whole took five hours, but I only spent thirty minutes of that time not in the waiting room. 😛

After the last picture was taken & radiology guy & I celebrated our mutual victory with a high-five, my Mom & I headed up to my appointment in the vascular clinic to discuss my results with the team only to find I actually didn’t have an appointment. Suddenly the dirty looks from people who actually did have appointments & the complete bafflement of the receptionist as she told us she couldn’t find my name in the system anywhere made complete sense. #awkward

Because of my Mom’s insistence we did have an appointment, we lucked out & got to talk with my favorite medical professional in the history of ever for a few minutes. He patiently explained we didn’t have an appointment, they just wanted us to come up to book an appointment while we were here. Plus, there was no way my scans would be ready yet. But as it turns out, our airheadedness actually did work to our benefit. When he offered to schedule me an appointment for three weeks from that day, I was able to explain to him in person how much worse my pain had gotten, how the severity was scaring me, how I didn’t think I could make it three weeks without landing in the Emergency Room several times. I was able to look him in the eye, tell him how much I was struggling even just sitting there, & ask him if there was any possible way they could fit me in sooner. Because I needed to address this asap, & I knew it.

Let me just say there is a reason this guy is my favorite! He worked the system & was able to get me an appointment for just one week later!

Now, around this time, I had made it my life’s work to mask what was going on with my health & in my heart, & I was doing a really good job. I don’t even remember what/if I told my friends. A huge part of my reasoning was the fact that it was April, & April is always a very happy/busy time for our family. I wanted to put all the focus on the happy things going on. I wanted to pretend I didn’t have health limitations & seize the moment. I wanted to pretend to be normal, & I did.

In just one week, we visited Regionals (my last tournament ever), visited my godparents at the same time, celebrated Luke’s birthday, celebrated my birthday in three parts, I graduated Chemistry (which was a huge deal considering all I’d gone through), hosted a huge 18th birthday party, & I had a sleepover with my best friend. While I paid dearly for these activities later on, I cherished these memories & still do! That week is one I remember feeling the most loved. ❤

 

If I’m perfectly honest with myself, I think another reason I’d put on a mask was because I was struggling emotionally. I wasn’t ready to deal with my feelings…or I was simply unwilling. I was faking it until I made it because I was scared to be vulnerable with people. Scared of feeling things, scared of condemnation & rejection. My friends knew I wasn’t being completely honest with them about how I was doing & encouraged me to be honest, but I was terrified of being hurt if I did.

On the way to Regionals, as I listened to my Mom update our family & as I had time to actually think about everything, my resolve to be okay started to break & I felt overwhelmingly weak. While I did my best to smile through the tournament,  be present with my friends, & seize a “normal” senior year experience, my heart kept pounding, “fear” with every beat. Among other things, we were concerned I was at risk for something called, “mesenteric ischemia” at the time, which is a condition in which there isn’t adequate bloodflow to the small intestine. Googling that term does not bring comfort & peace, but rather terror! Needless to say, I had a lot on my mind.

The next week–as we sat in the vascular clinic for the second time–that visit, whether I knew it or not, changed me. We discussed the debilitating pain, how my situation was only worsening with time, & what our options were. Little did I know those options would change my life forever.

& that’s when he told us he would consider offering me a Left Renal Vein Transposition. One of the rarest major surgeries done in the United States. A crazy difficult surgery with a very long recovery time & only a 50% chance of success.

& the decision was up to me.

But despite everything, at least I didn’t have any signs of gastroparesis, so that was great, right?

At the tournament, one of my sweet friends gifted me the book, “The Scars That Have Shaped Me,” by Vaneetha Risner. She had twenty one surgeries by the time she was thirteen, spent years in the hospital, endured physical & emotional abuse, was left by her husband, suffered multiple miscarriages, watched her child die, & was diagnosed by a very painful, progressive disease. & yet she still writes & uses her story to uplift others. She is an inspiration. I would absolutely recommend this book to anyone, it is just that good. I know I’ll re-read it for years to come.

A few days before the festivities began, I sat down in my favorite chair in the sun &  thought about the book title & felt drawn to start it simply because I was now facing the looming possibility of a very huge scar myself. I opened it & it drew my attention to John 11.

“Now a certain man was ill, Lazarus of Bethany, in the village of Mary & her sister Martha….so the sisters sent to Him saying, “Lord, he whom You love is ill.” But when Jesus heard it, He said, “This illness does not lead to death. It is for the glory of God so that the Son of God may be glorified through it.” Now Jesus loved Martha & her sister & Lazarus. So when He heard that Lazarus was ill, He stayed two days longer in the place where He was.”  (vs. 1-6)

Okay, when I first read this passage, I was flabbergasted & a little disgusted. In my opinion, if Jesus actually loved them, why did He purposefully stay where He was? Why would He delay? Why would He let Lazarus die? I mean, come on! He didn’t even have to actually go where Lazarus was, He’s God, He could’ve just said the word & Lazarus could’ve been healed on the spot!

I also deeply identified with this passage. It was reminding me of how my Father had allowed me to suffer for the past year. Because like Lazarus, I was ill. Despite my prayers, my surrender, my cries of desperation, there was no answer….just like He didn’t answer Mary & Martha. There was no healing. There was no miracles. Just deafening silence. & I realized that hurt me. Because when you have faith & you know Jesus can take the suffering from you & He doesn’t….it crushes you. It can feel like abandonment.

I’ve asked myself (& God…mostly God) a lot of questions over the years. Why me? What in God’s holy name did I do to deserve this? Where was my deliverance? For that matter, where was God?

Because doesn’t love run to help? Doesn’t love respond?

But what I had failed to see was that Jesus was not silent. Jesus hadn’t abandoned me. He was most definitely responding. He responded to Lazarus, & He would respond to me. In some ways, in fact, He already had.

I had failed to get past my anger & see that the point of the passage is that Jesus loved Mary, Martha, & Lazarus enough to not answer immediately. He loved them enough to show them His glory so they could be transformed, renewed. He loved them enough to let them suffer so they could experience His holy comfort. He loved them enough to delay His coming so they could learn to walk by faith.

& that’s when I realized. God loves me enough to not instantly rescue me. Through this journey, little by little, He is showing me His glory not only through actions, but through teaching me who He is & what He does. He knows I need to see Him, sense His presence, & understand His heart. & He knows I need these things more than I need instant rescue. Because there will always be things I need rescued from, no matter what, but encounters like these with my Father will last forever. They will shape me into the woman of God I’m meant to be. They will help me to encourage those who are placed on my life path. They will help me to grow where I am planted. They will transform me.

& until I am rescued, I am not alone & He is not silent. He is holding me, surrounding me with His presence, filling me with His strength, lifting me up when I fall, filling my mind with His promises….because He knows explanations can be cold comfort when His arms are warm. Love responds.

If you continue reading John 11, you discover that after a few days, Jesus travels to comfort Mary & Martha. Both sisters, though they greet Him at different times & not together, greet Him the same way: “Lord,” Martha said to Jesus, “if you had been here, my brother would not have died. But I know that even now God will give you whatever you ask.” (vs. 21) 

The sisters didn’t see it yet….the secret, the revelation, the transformation.

But Jesus knows what He’s doing. Why do I still doubt that?

He responds, “Did I not tell you that if you believe, you will see the glory of God?” (vs. 40)

& then Jesus raised Lazarus from the dead.

I sat there, allowing the magnitude of that moment to seep into my heart, & I voiced outloud the raw surrender of Risner as she experienced the greatness of that very same moment, “I want to see You & I want to believe that You are for me. I believe, help me to overcome my unbelief. Show me Your glory.”

Today, one year later, I still cling to what I believe was one of the most vital lessons God has ever taught me: that seeing His glory is a much greater gift than instant rescue.

 

 

 

 

Chapter Sixteen: Grace, Grit, Gratitude.

“Here I raise my Ebenezer; Here by Thy great help I’ve come; And I hope, by Thy good pleasure, Safely to arrive at home.” –Come Thou Fount Hymn.

Today I’m going to fast forward to present day to share a little bit of what’s on my heart & how you can play a part in blessing our family. Throughout my health journey, I’ve had many unique opportunities to see God working in my life & circumstances despite my young age. It has been an unspeakable blessing to be a disciple God has chosen to reveal His glory to. In fact, one of my goals is to share each of them on this blog to encourage others. Now, most of His works I haven’t seen in the moment, but rather down the line as I reflect on different moments. But as my latest health journey (Wisconsin) has unfolded, I’ve had the rare opportunity to instantly see Jesus working right in the  moment & that has been a priceless gift I want to share with you today.

As most of you know, this year our goal has been for me to receive medical care from the auto-transplant team at UW Health in Madison, Wisconsin, but you may not know why or how we made that decision. My parents learned about the auto-transplant program in Wisconsin long before I did. This program is an absolute game-changer for those who battle severe NCS like myself. Because NCS is so rare, there are very few treatment options, & I had already tried the ones that showed promise without any success. This program is very unique, is composed of some of the very best doctors & specialists in the USA (& possibly the world) who have dedicated themselves to helping those who are in my position find relief, provides hope for those who have been told there is none, & offers a very promising chance of finding healing, or at the very least an improved quality of life. I am so, so blessed to receive medical care from this program. Anyways, my Mom had mentioned it to me a couple times, but I wasn’t yet in a mindset to be receptive to what she was saying. I wasn’t ready to hear that my Left Renal Vein Transposition Surgery had failed. I wasn’t ready to hear it was time to start over. I just wasn’t ready.

But as I sat in the UVA vascular clinic consultation room & listened to my surgeon confirm what I’d already known deep down–my surgery had failed–the walls in my mind began to crumble. & as I listened to an unfamiliar, inexperienced doctor inform me my “only” option was a painful, temporary procedure that more often causes terrifying complications than success, I knew that Wisconsin was my best bet & possibly my only hope. This was my next step.

There was only one problem. A week earlier I’d woken up & found my Mom tearful & distraught. Now, I’m not a morning person at all so I probably wasn’t the most helpful daughter right then…I’m sorry, Mom! 😛 Even though I sat there like a zombie as she told me the auto-transplant program had been placed on hold, I was freaking out inside. She fought back tears as she explained it had been announced the program would be on hold indefinitely (possibly due to budget cuts, but that hadn’t been confirmed), no one was sure if it would re-open, & how crushing this was for our family because this was our one hope for me to find healing in 2018. She went on to say that she was going to campaign like she had never campaigned before, that she would fight as long as it took, that she would never give up on me & my journey to find healing, & that we were going to battle like my life depended on it…because it did. & she fulfilled her promise with flying colors. Thanks, Mom. I wouldn’t be here today without you. ❤

Y’all know what happened next, because YOU made it happen! The entire month of January, we contacted every single person we knew & asked them to write letters to UW on behalf of me & all those who battle NCS. We set a goal of 100 letters & you helped us SURPASS it in record time! Y’all really came through for me in my time of need…just about 300 people wrote letters on my behalf! Some of you even sent me copies of the letters you sent, & I absolutely loved reading them. They touched me beyond words! We would not be where we are today without you! We were told the letters touched those who made the decision to re-open the program, & had a strong impact on their decision. Thank you!

Every week we would call UW to see if any progress had been made. The answer was always the same: they received our letters, but there was no news. I don’t think I have ever prayed more passionately or fervently than I did during that time. I’ve never wanted something so badly before & it was killing me. We knew they were going to have a meeting at the beginning of February to discuss the fate of the program, & I don’t think my family has ever been more anxious! To say that experience was a lesson in trusting God’s sovereignty is an understatement. 😉

At the beginning of February, we got word that UW had decided to re-open the auto-transplant program! Of course, we were ecstatic, but cautious. They hadn’t communicated when or how, & we were unsure where I was on the waitlist. But nevertheless, the program was going to open, & that was amazing progress!!! I was seeing God move a mountain that seemed immovable, but this was just the beginning….

On February 13th, I was resting in bed watching Netflix when I had a sudden impulse to check my phone. I had a missed call from just five minutes before. There was no voicemail, & it was an out of area number I didn’t recognize. I didn’t think anything of it until I realized it was a Wisconsin area code. I frantically called back, & a man answered.

“Hi, my name is Grace Balasic. I had missed a call from this number just a few minutes ago, & wanted to call back.”

“Oh yes! Hi Grace! This is Dr. Redfield calling from UW Health Center. I wanted to set up a time with you to have a phone consultation & go over your health history to get this process started.”

Oy!!! Oy!!!! I. Was. On. The. Phone. With. WISCONSIN!!!! THEY HAD CALLED ME FIRST!!!! WHAT WAS HAPPENING?!?!?! I started to tremble & a huge grin broke out over my face. 😀 I have no idea how I got through that call without having a full blown white girl screaming freakout, but somehow I kept my cool & calmly scheduled a time to speak with him on the phone just two days (!!!!) later, told him how much this call meant to me, expressed deepest gratitude, & hung up.

After letting out my excited energy with my Mom & Luke & calling my Dad to tell him the good news at work, for the first time in too long my very first thought was that I needed time with the Lord immediately before I did anything else. I went in my room & I prayed & praised on my knees & acknowledged His hand in this situation & His undeniable presence in my life. I’m not sure I have ever felt more on fire for God or closer to Him than in that moment. It was truly indescribable & I will never forget it.

Later that evening I called one of my best friends to tell her the news & we ended up talking for a several hours about everything on our minds/hearts. She told she’d started something new in her prayer life called an “Ebenezer journal” where she wrote down specific prayer requests our Father had clearly worked in & answered. She shared how encouraging it had been for her in her walk with the Lord & that she felt like the Wisconsin phone call was my own personal Ebenezer stone. I recognized the term from the popular hymn, (its one of my favorites) but I realized that while I’d sung it many times, I didn’t actually know what it meant. I made a mental note to google where its referenced in the Bible & look it up during my next devotional time, & went back to our conversation.

The next day, as I sat down to knock out my scheduled Bible chapters of that day, I’d forgotten about the Ebenezer stone. Just a few weeks before, I’d finished 1st & 2nd Kings & had spent some time in prayer to see where God would lead me to read next. He led me to 1st & 2nd Samuel. I was already enjoying it immensely, especially Hannah’s story.

Anyways, I opened my Bible to 1st Samuel 7 & started to read. When I got to the end of the chapter, my mouth fell open. It was none other than the passage that talks about the Ebenezer stone! I couldn’t believe it. It was so abundantly clear that God had prepared my heart for this moment, led me to that passage on that specific day, & orchestrated that specific moment to show me for the umpteenth time that He was working right then & there.

Wherever you are in your life right now, whatever your circumstances may be, may my story remind you that He is present. He is performing a real miracle in my life & giving me a front row seat to watch. Wow. I know, without a shadow of a doubt, He is working in your life too…even if you can’t see it yet. He loves you, & His plans for you are unimaginably amazing. He has got this & He has got you! Believe it, friend, because its true!!

For those who don’t know, the term “Ebenezer stone” is derived from Samuel the Prophet. In the beginning of 1st Samuel, it talks a lot about a series of various battles between the Israelites & the Philistines. Through these battles, Samuel led the Israelites as their prophet & judge. In one particular battle, the Israelites knew the Philistines were coming to attack them & they were very afraid. “They said to Samuel, “Do not stop crying out to the Lord our God for us, that he may rescue us from the hand of the Philistines.” (vs.8) So Samuel made a sacrifice to God & cried out to Him & the Lord answered by throwing the Philistines into great confusion & panic.

So as reminder of the amazing victory God had given His people, “Samuel took a stone, and set it between Mizpeh and Shen, and called the name of it Eben-ezer, (the stone of help) saying, Hitherto hath the Lord helped us.” (vs.12) & when the Israelites saw the Ebenezer stone, they were reminded of how their God had helped them in their time of desperation & trouble.

When my friend mentioned this Wisconsin situation was my own personal Ebenezer stone, she was saying this is a clear instance in my life where I could see God helping me win my battle in my time of desperation & trouble. & she couldn’t have been more right! This whole situation was an amazing opportunity to see my Savior working miracles, moving mountains, & performing the impossible right in front of my very eyes. It doesn’t get better than that!

But He didn’t stop there. He opened the door for me to have a phone consultation just a few days later, He opened the door for me to go to Wisconsin for my diagnostic just a few weeks later, He carried me through the long trip despite my debilitating health issues, I passed my surgery diagnostic, He opened the door for me to see a urologist three months early, & now He has opened the door for me to proceed with my kidney auto-transplant very, very soon. He is continuing to move mountains & work in my life!

I chose to share this part of my story with you today for a specific reason. As I shared above, the journey isn’t over yet!! This surgery will be taking place in Wisconsin, so in addition to medical costs there will be travel, food, & lodging costs, with the additional goal of my Dad being able to fly to be with us the week of my surgery. I’m not going to lie, the need is daunting, but we are very prayerful & trusting God to meet it. As I have shared above, God has moved every mountain & roadblock necessary, unexpected & expected, for me to receive medical care in Wisconsin, I know this is no different! I know He is my Great Provider & will provide for my every need!!

So this is where you come in. We are so grateful for every single one of you! We could not do this without you!

Our dear friend & my adopted aunt, Mandy Leeth has generously & graciously designed this beautiful bracelet & is hosting a fundraiser for our family! I am attaching the details written out by her below. Please feel free to share this with your friends & family! The following is written by Mandy:

GRACE + GRIT + GRATITUDE

Welcome to our FANTASTIC FUNdraiser! We are raising money to assist Grace on her journey to go and have a LIFE CHANGING SURGERY in Wisconsin in May 2018!

ALL proceeds– just to be clear, will result in ZERO profit for the jeweler, and ALL profit for Grace- will go to help with all the travel and preparation and lodging, etc., to assist Grace and her family with their needs. The cost of the bracelet is $59.00, plus shipping and state sales tax.

We have selected a gorgeous leather cord and gold bracelet that we feel reflects the GRIT and GRATITUDE that our GRACE has shown as she has gone through this difficult process. The financial burden is heavy, but I believe with your help, we can make a DIFFERENCE! By purchasing this bracelet, you choose to support Grace spiritually, financially, and with an outward statement and expression that will allow you to mentally and emotionally be on the journey with her, and to tell others about her situation. Please partner with me on this, and help change the life of this beautiful young woman!!

Get yours today by contacting Grace or Kristine directly, or do it yourself by following these simple steps:

Go to Mandy’s personal website. https://www.premierdesigns.com/mandyleeth

  1. Search for #50186
  2. Click “engrave me” & enter the “Grace~Grit~Gratitude” (if the “~” doesn’t look quite right (it didn’t on my phone) or it isn’t perfect, continue on anyway. Mandy will be double checking & perfecting each bracelet before finalizing the order, so no worries…they’ll all look the same by the time you get them!)
  3. Add it to bag
  4. Fill out the required check out information
  5. In the memo that says, “are you shopping for an event/hostess?” Say yes & choose the “grace grit gratitude event”
  6. Ship it to yourself
  7. Select pay online if you’re using a credit/debit card or “pay me” if you want to mail her a check or cash.
  8. Place the order!

Please be aware that this event will not close immediately, and shipping will not occur until orders have been collected at the end of the month of April 2018.

Credit Cards, Cash and Check made payable to Mandy Leeth, the jeweler, are accepted.

If you do not want to buy a bracelet, but still want to give or want to give extra, that is perfectly fine too! Every little bit adds up! Please don’t hesitate to contact me for more information or with any questions you may have.

You make a difference! We are GRATEFUL for you! I know God is going to do GREAT things in this fundraiser! I’m believing!