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:


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.

  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!

Chapter Fifteen: Nope, No, Negative.

“All these little decisions, these everyday things I surrender, these choices I make daily will one day shine in glory. They will all count.” -Vaneetha Risner.

Nope. No. Negative.

These were the first three words that popped up in my brain the first time my Mom brought up seeing a vascular surgeon at UVA. She had done her research & figured out (quite wisely) this was definitely the best next step for me. I, however, only heard the word “surgeon” & couldn’t figure out why in God’s holy name I needed to see one. Because clearly my issues weren’t the kind where drastic surgical measures needed to be taken…we could just get me some medication or change my diet or something. But I didn’t need surgery.

……& now here we are one year later & I’m preparing for my second major surgery. Ironic, isn’t it?

Yeah….I don’t know what I was thinking. 😛

But more than feeling dubious, I think I was becoming downright weary. At this time, I’d been sick for seven months, & with all the doctor visits, bloodwork, hospital visits, testing, & procedures, I’d only gotten one solid diagnosis. To top it all off, I’d been told I would almost certainly be back to normal after removing my tube, & I was not. We had just gotten home from my last speech & debate qualifier & I was confused, discouraged, emotionally exhausted, & skeptical.

I told my Mom I thought going to another specialist would be a waste of time, energy, & money. We’d checked in with my pediatric gastro specialist & he was skeptical anything was really wrong. We’d accidentally wasted a month in the wrong department (we needed vascular, not cardiology) & after wearing that heart monitor for a month, nothing ultra concerning was found. Deep down I knew I was sick & was going to need to figure out a new plan of action at some point…but my brain just wasn’t there at that time.

You see, I was feeling crazy. & not the fun, sugar high, 2am hyper crazy either. 😉 I was doubting if I really had something wrong or if I was just going mentally insane. Because maybe I’d just gotten used to feeling sick all the time. Maybe I was just pathetically lazy deep down inside. Maybe since no-one could find anything, nothing was actually wrong & this was all in my head. I think all the, “you’re just stressed” lectures, normal test results, & “birth control will heal you” talks just really went to my head & stayed there. Satan can really be oh so convincing when he whispers his lies in your ears…there’s a reason he’s called the king of deceit.

But oh my word, my pain was intense. Over the course of eight weeks, it had spread into my spine, lower back, thighs, left side, ribs, & pelvic region in addition to my right side, epigastric, & head. I also still had very low energy levels & while I was doing a better job eating, it remained an overall struggle. Despite this, I still tried as hard as I possibly could to continue “real life” in typical Grace fashion. But as always, these activities came with very harsh consequences that would land me in the bed in tears with excruciating pain. It was then I realized that my mind was so willing, but my body was so unable, & when I realized that, I instantly felt less crazy.

My Mom did a great job sitting me down & explaining why I should seriously consider seeing Dr. Cherry. In the end, she sold me, & we booked an appointment. After all, if I didn’t like him, I didn’t have to go back.


On April 12th 2017, Mom & I made our umpteenth trip to the UVA vascular clinic. First, I had what’s called a “Vascular Duplex Exam,” which is “a non-invasive evaluation of blood flow through your arteries and veins. This test provides information to help your vascular surgeon make a sound diagnosis and outline a treatment plan.” Mom & I knew something was up when they impromptu called in a professional running a study on a rare disorder called, “Nutcracker Syndrome,” & asked her to take a look at my test. Shortly after that, she whisked Mom & I down the hall to a newer, high technology machine to check me out further. I heard bits & pieces of the nurses/radiologists conversation…”do you see that?”….”yes, there’s the compression”….but no one would actually confirm they’d found anything.

Next we headed to the clinic. Before meeting Dr. Cherry, I met with two NPs. They were both extremely kind & I instantly liked them. Mom & I felt much more at ease in the vascular department than previous ones. While I didn’t know it then, they would become two of my favorite medical peeps ever. We went over my entire health history in addition to my current symptoms. For the first time in my medical career, they didn’t make me feel crazy.

Then they began to address my vascular duplex exam results. & that was the day I was diagnosed with Nutcracker Syndrome. Nutcracker Syndrome is, “a vascular compression disorder and refers to the compression of the left renal vein (the vein that carries blood purified by the left kidney) between the superior mesenteric artery (SMA) and aorta.” They explained to me that they could select a random group of people off the street & 40% would probably have a slight compression. However, most people have very mild, practically nonexistent cases & don’t experience any symptoms at all. I, however, am in the rare minority. My case of NCS is very severe. Because of the severity of the compression, my blood flow has been compromised which makes the it very weak. Often when it can’t go where it’s supposed to go, the blood finds alternate routes, causing spinal congestion, midline congestion, & pelvic congestion in addition to causing my chronic pain + other symptoms.

Dr. Cherry came in & said his next recommended step was a gastro emptying study to make sure my organs were still functioning properly with the compromised blood-flow & that I didn’t have any gastroparesis (a condition that affects the stomach muscles and prevents proper stomach emptying) from being malnourished/unable to eat for so long. After the study, I would meet with them again to review the results & discuss my treatment options.

Believe it or not, my first emotion was immense relief. I know that probably sounds very weird that I was relieved about having another rare disorder, but I saw it as legit confirmation I wasn’t crazy. I did have a very serious problem going on in my body that was causing these issues & they had actually found it. I felt like I had been holding my breath for a very long time & I could finally let it out. Obviously, as time went on, these feelings would change & become more mixed, but for right now I was okay. I wasn’t crazy. & that’s what mattered to me in that moment.

I didn’t know the complexity & severity of NCS. I didn’t know how truly lucky I was to be under the care of Dr. Cherry…so close to our home no less. I didn’t know how few treatments there are for NCS. I didn’t know he was one of the few who could actually perform one of the rarest surgeries in the USA that I would end up having just a few months later. I didn’t know the craziness this journey would entail over the next year.

But I would soon find out.





Chapter Fourteen: Reckless Love.

“To love at all is to be vulnerable. Love anything, & your heart will certainly be wrung & possibly be broken.” -C.S Lewis.

I think I’ve always struggled with being vulnerable. Sometimes, it takes years for me to be completely vulnerable with a person. Because through unfortunate life experiences, I have learned that while it can take years to build trust…it only takes a few minutes for it to be broken. The thing is, I’ve been hurt by people. But let’s get real…who hasn’t? Who hasn’t had someone break your trust? Who hasn’t had their feelings hurt? Who hasn’t had someone let them down at least once in their lives?

I’ve never met someone who said, “I just love being vulnerable.” Ever. It just doesn’t happen. The truth is most of us avoid vulnerability at all costs because it is uncomfortable for us. We put on masks, fake it till we make it on social media, & constantly put on protective armor to avoid getting hurt.

Sound familiar?

Today I got curious to see how the word vulnerable is defined, & I admit, it wasn’t what I was expecting.

Oxford Dictionary defines it as, “exposed to the possibility of being attacked or harmed, either physically or emotionally.” The synonyms include, “helpless, weak, susceptible, impotent, powerless, defenseless…” Even further, the Latin root literally means “to wound.”

Ouch. This sounds like my worst nightmare.

But for all the work we put into shielding ourselves from this phenomenon, love is still our deepest longing, & loving is quite possibly the most vulnerable thing. 

If that girl hadn’t allowed herself to fall for that guy in high school, she would’ve been spared the pain of a wounded heart. If that woman hadn’t said “I do” to the love of her life, she wouldn’t be broken when he betrayed her trust. If that kid hadn’t taken a risk on a budding friendship, he wouldn’t be left hurt & confused after a fight. If that woman hadn’t allowed her parents to fill up most of the space in her heart, she wouldn’t be completely shattered when they died. The list goes on & on.

So why do we love, if it causes so much pain & heartbreak?

“Love the Lord your God with all your heart & with all your soul & with all your mind & with all your strength.’ The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” (Mark 12:30-31)

I think God knew when He gave this command that by keeping it, it would inevitably produce suffering, but yet He still charged us with it. Sometimes, it seems easier to run away, lock the door of our hearts, & build walls. I know I’ve been tempted a time or ten. If we didn’t have connections, if we were completely detached from everyone/everything, it wouldn’t affect us…but our Father did not design us to be void, emotionless pillars of stone. As He said in the Garden of Eden, “it is not good for man to be alone.” We were made to love & be loved. & love is quite possibly the most beautiful, fulfilling, rewarding thing you’ll ever do.

But maybe we are less likely to suffer for others for the sake of love until we understand how His love made Jesus suffer for us.

Because how much more vulnerable is Jesus when He risks loving us? 

The Last Supper, when Jesus sat with His disciples & broke the bread & drank the wine–a foretelling of what was to come–it was a marriage covenant solidifying His love for us. “In other words, Jesus says to you with this cup, I love you. I want you. I commit to you. This cup is the covenant in My blood, which I offer to you.” -Voskamp.

Love is a risk, & Jesus risked it all for you & me. In fact, He continues to risk…day after day…time after time. Love is painful, & Jesus endured the ultimate pain so we don’t have to. Love is scary, & Jesus had awe-inspiring courage as He willingly faced the cross.

You see, “there are those big-banner, social media, camera-rolling moments, with some imagined soundtrack building to a thundering crescendo, times when we think we’d all pour out our lives, throw ourselves out of a plane, in front of a train, show no restraint & brave the haul of the hurricane to save our love. But real love doesn’t always look like that kind of heroism. That’s more like Hollywood.” Voskamp.

Real love looks more like a sacrificing Savior. A Father who sent His perfect Son from His majestic throne in Heaven to this flawed, sin-filled world to be born in a dirty barn surrounded by dirty animals & raised by two simple human beings. Real love is a Father knowing–even as He did this–that His Son–who never did a single wrong thing in His entire existence–would be beaten, condemned, mocked, & nailed to a cross as a sacrifice for all who have sinned & all who will sin. Real love is a Savior who knew the very same people He died for would reject Him time & time again, would continue to sin, would run away from Him, would curse His name…& yet He loved anyway.

In the ultimate sacrifice of love, Jesus was broken & given. 

How would you like it if someone you loved fully & completely, someone you risked everything for, someone you died for constantly rejected you? “I can’t spend any time with you today….I’m too busy.” “Sorry, I’m not interested in accepting your love or getting to know you.” “Okay, I only have 10 minutes & then I’m done…& don’t expect me to actually talk to you.”

That would crazy hurt, wouldn’t it? This is what Jesus has experienced & will experience a million times over, but yet He always continues to welcome us back with open arms.

I was recently introduced to the song, “Reckless Love,” by Cody Ashbury, & I love the way He describes the meaning behind the song. “God’s love is reckless. He is not reckless, but the way He loves is. He is utterly unconcerned with the consequences of His actions with regard to His own safety, comfort, & well-being. His love isn’t crafty or slick. Its not cunning or shrewd. In fact, all things considered, its quite childlike & might I even suggest somewhat downright ridiculous. His love bankrupted heaven for you & for me. His love doesn’t consider Himself first. It isn’t selfish or self-serving. He doesn’t wonder what He will gain or lose by putting Himself on the line. He simply puts Himself out there on the off chance that you & I might look back at Him & give him that love in return.  His love isn’t cautious. It is a love that sent His own Son to die a gruesome death on a cross. There is no plan B with the love of God. He gives His heart so completely, so preposterously, that if refused we would think it irreparably broken. Yet He gives Himself away again & again & again & again time & time again. Make no mistake our sins do pain His heart & 70×7 is a lot of times to get your heart broken. & yet He opens up & allows us back in every single time. His love saw you when you hated Him & all logic says they’ll reject me. He said nah I don’t care what it costs me. I lay my life on the line as long as I get their hearts.”

Wow. Just Wow.

So even though love is a risk, I believe the reward is greater. I want to learn to love like Jesus. I want to love selflessly & completely. I want to be broken & given in a thousand different ways & die a thousand little deaths for the sake of loving others. I want to love those who feel unlovable, & forgive those who feel unforgivable. Because maybe love isn’t always feeling “good” about others. Maybe its about ultimately being willing to suffer for others.

I want to believe there is enough love in me, that I am loved enough by Him, to be made enough love to give.

I want to be vulnerable. I want to give love to the hurting. I want to love the beautiful people in the backstreets. I want to love those who hurt me & betray me. I want to be brave & open my heart to new relationships. I want to share His love with everyone I come into contact with. I desperately want to love when it’s the most inconvenient…because loving should never be an intrusion or interruption.

Most of all, I want to participate in a full union with Christ. I want to be fully & completely loved by my Father…fully & completely loving Him in return. I want to remember & praise His sacrifice, His risk, His vulnerability.

In the words of Ann Voskamp, “I will love you like Jesus, because of Jesus & through the strength of Jesus. I will love when I am not loved back. I will love when I am hurt & disappointed & betrayed & inconvenienced & rejected. I will simply love. No expectations, no demands, no conditions. I will fall in love & fail at love & fall in my love. & nothing will stop me from loving. Not time, distance, disappointment, or death. You may not love me back. You may humble me, humiliate me, reject me, shatter my heart, & drive the shards into my soul—but this is not what matters. What matters is that in the act of loving we become more like the givenness of Christ Himself. Nothing will stop me from the risk of vulnerably loving because love like this is not a risk. For love defies logic & keeps on loving when it makes no sense because that is what love does. Because love is a risk that’s never a risk.”

Because love only has logic, only has meaning, when it takes the form of a cross.











Chapter Thirteen: Its the Little Things.

“Sometimes, said Pooh, the smallest things take up the most room in your heart.” -Winnie the Pooh.

Last week’s chapter wrapped up the first third of my health story, which means there are only two thirds to go. Today, as I begin the first chapter of the second segment of my health story, I can tell this is going to be a lot harder to remember & write. There are aspects about what I’m about to share in the coming weeks that I haven’t even allowed myself to process yet, but nevertheless I know this is a great first step. I am learning that writing is therapeutic for me. It helps me to finally feel what I need to feel, mourn what I need to mourn, & close some unfinished chapters with finality & acceptance, & for that I am grateful.

In March 2017, I enjoyed the good days, & did my best to accept the bad days that inevitably followed. I was learning that every activity had a harsh consequence, & so I had to really think through each activity & decide if it was worth it. I enjoyed the Spring weather with Luke, did my best to keep up with Chemistry, & saw the long-anticipated “Beauty & the Beast” movie with my best friend. I was learning to notice the little things in life & embrace every single victory, no matter how small.

But my main March priority was attending what would be the last qualifying tournament of my speech & debate career. For those who don’t know me personally, speech & debate was a main highlight of my high school experience. Our family joined the league in 2013, but we had no idea the countless ways it would impact our lives. For example, one of my favorite memories is driving to Minnesota with my Dad for the National Championship & the quality time we spent together. The experience has taught me how to communicate effectively, defend my beliefs respectfully, speak in public environments with confidence & poise, & enhance my writing skills, among other things. As an added bonus, our family has made some of our very closest friends from the league. In fact, 84% of my closest friends I met at tournaments. The experience has grown me as a person & helped shape me into the person I am today.

I have always looked forward to tournaments & given everything I competed in 110%.  So of course, I’d planned to leave the league with a bang my senior year.

When my illness first started, I figured I would be healed waaaay before tournament season began. But as it turned out, I was dangerously worse by then. It was really hard for me to let go of competing. I had just let go of the Guatemala trip, & now I had to say goodbye to another significant part of my life as well. Plus, presenting speeches was one of the things I found my self-worth in at that time. Giving it up felt like losing my very last shred of self-worth. (See Chapter #11)

My parents knew I was having a really hard time letting go, & felt really sympathetic. They really wanted me to have at least one last semi-normal high school experience. I mean, I’d given up my entire senior year. So in an act of pure hope, they registered me for a North Carolina tournament in two events. Somehow…don’t ask me how because I really don’t know…I had written two speeches during the madness. (I tried to convince my Mom to let me do five in my typical overachiever way, but she wouldn’t budge. Looking back, I’m grateful, lol!) We knew it was quite a long shot, but figured it couldn’t hurt to try.

Over the next month, God opened every single necessary door: host housing, childcare for Luke, & health exceptions from the league that provided the exact flexibility we needed. In the weeks leading up to the event I made sure I stayed on complete bedrest & ate high-calorie foods to get my weight up. I knew my health was precarious, but I was determined. So Mom & I set off…skeptical, but hopeful.

I can honestly tell you I did not take one single moment for granted. I soaked up every hug, every conversation, every round, & every experience like I never had before. I wanted to document every moment & embrace the miracle that I could even be here.

I tried so hard that week. I tried to smile through the pain, keep up with everyone, remain perky & fun, & act like I was okay even when I wasn’t. I tried to stay strong, even when I was hurting, because I felt embarrassed. I wanted to pretend my illness didn’t exist. I even joked about my health to keep it from being a serious topic. I craved being normal & healthy like everyone else…I just wanted to blend in.

You see, while some people might like extra attention, I definitely don’t. I have never been someone who craves being the center of attention. When I was a kid, I would bawl my eyes out when anyone tried to sing me happy birthday. See proof below. 😛 Actually, a couple people have congratulated me on all the attention I get, but I just have to laugh a little bit when they say that. I mean, the only reason I’m getting attention is because I have chronic illness. Even if I did like attention, I would gladly trade it for a healthy life. IMG_1515

I think I felt this way because my friends hadn’t really seen me sick. They’d heard the stories & listened to me cry as I described it, but to me that was a lot different than actually witnessing it. To this day, the only person who has seen every single gory moment is my Mom. I hated being the sick friend. I hated being the person who couldn’t walk down the hall without assistance, who had special permission to use the elevator, & who had to come late/leave early. I hated needing special treatment & being looked at with pity. To me, it was just really embarrassing on all the levels.

But as much as I tried to hide it, it was a struggle. You see, tournaments are pretty intense even for a healthy person. The car ride is long, (which is very difficult with pain/nausea) it consists of three fourteen hour days with back to back rounds, (which makes getting adequate rest difficult) the nerves make it difficult to eat, (which is not good because it is very important for me to have adequate nourishment) & its a lot of walking everywhere. (which takes energy)

Believe it or not, it was during this week I gained a new appreciation for my heart monitor. You see, in a way, this situation was perfect. If I rested all the time, how would the specialist see the symptoms that occurred when I attempted little bits of activity? We needed something to show proof of an issue, & this was it.

My very first round, right in the middle of my speech, I had my first attack. The room started to spin, I started to shake, I couldn’t stop sweating, the pain hit, & my vision began to blur. Somehow I held my composure & was able to finish the speech, but when I came out I collapsed on the floor, pale, shaky & in tears, & texted for my Mom to come. I think my peers just assumed I’d had a really bad round, but in reality, I was just sick & scared.

We got a call from the hospital checking in later that day because my heart rate had been up past the 200s. They wanted to make sure we’d gotten it down & didn’t need emergency assistance. I couldn’t help but feel panic because I did not come to Cary just to spend time at another unfamiliar hospital. The lights, sounds, & people were overwhelming me, so I excused myself from the busy hangout, found a quiet spot in the hallway with a friend, & just chilled for a few hours. I was learning that I needed to do whatever I needed to do to take care of myself, no matter what people thought.

But Friday night was when everything hit a climax. In the middle of the night, high heart-rate woke me up. My FitBit said it was over the 200s again, & no matter what I did, I couldn’t fall back to sleep. I tried breathing techniques, rehydrating, watching a movie, taking a hot shower…..but nothing helped. Exasperated, I figured there wasn’t anything I could do but press on.

Later that morning I was sitting with two of my best friends waiting for semi-final announcements when suddenly it clicked: this was not good. I needed to stop ignoring it, go find my Mom, & figure out what to do. I got up, walked out of the auditorium, & motioned for my Mom to follow. We sat in two chairs right outside the doors. As I shared what was going on, more symptoms hit hard. My face lost all color, my head started to throb, the room started to spin, my arms/legs felt numb, I felt drained of all energy, my heart rate spiked even more, & there was not one Mom in my line of vision, but three.

Honestly, I don’t remember much of anything after that. It’s all a blur. But this is what I can remember:

  • Really wanting to get out of there to somewhere private because at any second a flood of 200 people was going to come out & see me & that was just more embarrassment that I could possibly handle.
  • Someone telling me congratulations that I’d advanced & the fierce determination that kicked in afterwards to go right then & there across the building to compete. (yeah..I was not of sound mind)

& that’s about it.

Thankfully, the tournament director opened up a private room right down the hall from where I was crumpled & set up screens to provide privacy. Mom recruited two of my friends to help me get down the hall, (which was a lot harder than you would think when you can’t actually move one foot in front of the other & the lights are blinding you) & another friend grabbed Mom’s backpack with all her supplies while I  continued to blabber complete nonsense. Apparently even when I’m only half conscious I’m still a super determined person with slightly warped priorities, lol.

After 15-20 mins of resting & a full bottle of Gatorade, I felt ready to present my very last speech ever. With assistance, I made my way across the building to my competition room, took a deep breath, walked in, & presented my speech as if I had no health issues at all. It was an absolute miracle.

I didn’t realize it in that moment, but that entire week was a miracle. With the diagnosis I would receive just weeks later, I should’ve had to go to the hospital. I should’ve felt a lot worse than I did. I shouldn’t have been able to be there at all, much less compete in that semi-finals round.

There is no explanation for that week except God. I know He touched my body every single day with His healing touch & filled me with the exact amount of His strength I needed to get through. My Father knew what my heart needed & as always, He provided for those needs beyond my imaging.

By the grace of God alone, I finished the tournament in a way that provided me with the closure I so desperately needed. There is no doubt it was challenging physically & emotionally, but it was worth it.

I captured pictures with my friends, shared priceless heart-to-heart conversations, competed to the very best of my ability, shared my health story to provide awareness, & said the necessary goodbyes that needed to be said. I made memories & prayed with people & had one-on-one time with my Mom outside of a hospital.


I learned that I didn’t need to be embarrassed with my friends because the heart of friendship is being there–loving you as you are–even when the hard times come. Because real friends walk with you during seasons of sunshine & seasons of rain…sticking with you through the good times & bad. God has blessed me with some truly amazing friends that I can be real & raw with…friends that encourage me & are always there for me & pray for me & make me laugh through even the worst times. The fact is, I couldn’t do this without them.

I learned to stop, look around me, & soak up the little moments we so often tend to take for granted…the smiles shared from across the room, the laughter prompted by an inside joke, the precious time spent with friends, the kids squealing, the feel of the sun against your back & plush grass between your toes, the sound of your Mom breathing as she sleeps….because sometimes the smallest moments take up the most room in your heart. 

I think God knew I needed this time before the next leg of my health journey. Because He knew it was going to test me in ways I’d never be tested. He knew it was going to break me like never before. He knew it was far from over.

He knew I would cling to these joyful memories during the hard times.

Each day, each memory, each conversation, each moment was a gift.

& for that I am so thankful.

The tournament was a wake-up call for my family & friends. It showed us how scary my situation remained & that my health journey wasn’t finished yet. So, just a few weeks later, Mom & I embarked on another roadtrip to UVA.

We had no idea what was to come, but we knew God would get us through.

To be continued…..

Chapter Twelve: The Beauty of Lamentation.

“Lamentation is a powerful, & meaningful, form of worship because it places our love for God above even the worst of circumstances in our life.”   – Graham Cooke.

The healing was most definitely not sticking in February 2017. In addition to symptoms past (nausea, lack of appetite, abdominal pain, fatigue, etc) I began to experience a completely new set of symptoms: daily headaches, crippling back pain, swelling, hematuria, dizziness, blurred vision, high heart rate, shakiness, chest pain, & pelvic congestion among other things.

Of course, when I was officially diagnosed with SMAS, we wondered what sister syndromes could be linked to it, what could have caused it, & what other rare things my body could be battling, but by that time, treating SMAS was easily the main priority. I mean, a few times my parents weren’t sure I was going to make it through the night. I needed immediate treatment & SMAS was all we could think about at that moment. But now it was crystal clear I wasn’t better & more action needed to be taken immediately.

Now that we had at least one definite diagnosis, that gave my amazing Mom a solid research starting place. The more she researched, the more possible explanations she found for my flood of symptoms, & the more she knew I needed to get checked out for several possible rare syndromes.

Our main concern at this point was Median Arcuate Ligament Syndrome, which is another compression syndrome. According to Cleveland Clinic, “Median Arcuate Ligament Syndrome (MALS) is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus). In a patient with MALS, the median arcuate ligament essentially acts like a hammer and the celiac axis acts like an anvil, compressing (squeezing) the nerves in between. This causes a number of symptoms, such as pain in the abdomen that can be made worse by eating or activity. It is a very rare condition.”

Well, doesn’t that sound like great fun? 😛

My pediatric gastroenterologist referred us to the best cardiology specialist at UVA to pursue continued medical assistance on February 28th, & it was my least eventful appointment to date. We went over some brief history & niceties before she made her official professional recommendation: a 24/7 heart monitor for the month of March. I would keep it attached to my body, & when I had a symptom, I would click the button & log it into the matching cellphone. If an operator noticed something concerning, they would call & tell us to head to the nearest ER. It would become my constant, closest companion. At the end of the month, I would go back to discuss the results & our next step.


If I had a dollar for everytime someone complimented me for handling my situation extremely well, I would be a very rich woman. In fact, around March 2017, I was starting to get really tired of  the pressure to handle everything like a champ. I felt like I had unintentionally placed myself on a pedestal by handling everything so wonderfully, so when I broke or reacted everyone would just expect me to instantly revert to my sunshine attitude. I felt like I couldn’t talk to anyone about how I really felt without judgement. I was surrounded by people, but felt like I had no one. I was confused & angry, but I had taught myself that the only way to handle this whole thing was with 100% cheerful acceptance.

So I pushed every single broken piece of my heart deep down in a box, locked it up tight, & buried it never to be opened. Because good Christians always accept their trials with joyful smiles & exemplary attitudes….they never lament or mourn or scream. But I had never thought that lamenting could strengthen my relationship with my Father. I mean, good grief, there is a literal book of the Bible called, “Lamentations”. 😛

The story of Ruth in the Bible is very well-known, & in it Naomi is commonly known as the grumbling complainer…she has even been considered by some to have had weak faith. But one of my favorite devotionals, “The Scars That Have Shaped Me,” shows the story from the perspective of one who has also suffered.

Naomi definitely endured her fair share of tragedy. She lost her sons, her husband, & was left a widow in a foreign land for crying out loud!! I can completely understand her need to lament & mourn! But if you dig deep into the story & stop to think about it, Naomi’s trust in her Heavenly Father through it all was quite remarkable.

The devotional states, “Naomi’s trust is further evidenced by her determination to travel to Bethlehem alone. If Naomi felt that God had truly abandoned her, she would have never begun that journey. She would have stayed in bed, pulled the covers over her head, & died in Moab, bitter & angry at God. But she doesn’t do that. She acts in faith, trusting that God will provide for her.”

I actually admire what Naomi did next. She arrived back at her hometown & she didn’t plaster on a fake smile & pretend everything was perfect. She didn’t suffocate herself with an exhausting façade. She openly admitted she felt empty, she confessed she’d endured tragedy, & she invited those around her into her vulnerability. Risner expounds, “Naomi’s words were raw, but she speaks truthfully about God. She acknowledges that He is in control of all things, & everything is ultimately from Him. Her theology is profoundly God centered. Underlying Naomi’s lament is a deep trust & understanding of God. She is not resentful of God & has not turned away from Him. Quite the opposite, Naomi is moving towards God with honesty.”

Wow, I can only imagine the courage that must’ve taken. I’ve always been private about my pain & suffering. I have built impenetrable walls with every single person I know. I’ve never felt comfortable being completely vulnerable or honest with anyone in my life due to fear of judgment or condemnation. I’ve become a master in the art of faking a smile & saying, “well, things have been tough, but here’s what God’s been doing!” even when I’m not completely convinced. It never occurred to me that raw authenticity might draw those around us to God more than pseudo cheerfulness does. It invites them to be honest & real too without the fear of rejection/judgment. It shows them their brokenness is welcome here. But most importantly, it shows them Jesus doesn’t condemn us for our human moments. 

& you know, that uncensored honesty might have made some townspeople uncomfortable. There are always those people who ask how you’re doing, but don’t actually want to know. & it’s never comfortable to hear about someone else’s heartbreak, & no-one ever knows exactly how to respond. & you know, maybe some people judged her & questioned her faith. But I think some people–maybe even the majority–held her & accepted her. Maybe they even felt inspired to knock down some of the walls they’d built. Maybe they felt relieved that they had someone they could cry with without her questioning their faith. Maybe it was the proof they needed that they could lament to God without condemnation. Maybe it even drew non-believers to learn more about her loving, patient, merciful God.  

We know it had an effect on Ruth. Ruth was an unbeliever at the beginning of the story, but she had a front row seat to witness a completely different God than the one she believed as she watched Naomi.

What did Ruth see?  She saw a woman who’d lost everything remain loyal to her God & strong in her faith. She saw a woman who believed with every fiber of her being that God saw her tears & heard her prayers & would heal her. She saw a woman who trusted her God enough to be completely free & uncensored. & she saw a God who gave her absolutely no condemnation or judgment for it. So what does Ruth do? She gives up everything & follows her mother-in-law to her homeland, & it is in the midst of Naomi’s pain that Ruth comes to Jesus.

While it may sound strange, there is true beauty in lamenting in suffering. Lamenting is a way to keep us engaged with our Father. Lamenting is a way to invite God into our pain & heartbreak so He can comfort us & work in our hearts.

So you know what? I have a deep respect for Naomi & her honesty & abandon. But even more-so, I have a deep admiration for her trust in our Father. She has taught me some very important life lessons that I know I will cling to in the coming days.

I am learning that, “Godly lament does not repel people from the gospel, but rather draws them to the Lord; it strengthens rather than destroys the faith of others. When we live authentically, we naturally draw others to God’s grace. Naomi’s pain & bitterness could’ve pushed Ruth away from God, as Ruth saw Naomi’s struggle with God’s goodness. But instead, Ruth saw that Naomi’s hope—even through catastrophic loss—was in a sovereign God who was loving enough to hear & respond to her lament.”

& as we see later on, God does respond to Naomi’s lament. He gave her the gift of a faithful daughter-in-law Ruth, a loving son-in-law Boaz, & grandson Obed, who was in the line of Christ. & He gave her Himself…His presence & comfort, which was the greatest gift of all.

& if that doesn’t give hope to a hurting spirit, I don’t know what can.