I never imagined I’d miss waking up to an alarm in the morning, or the dreaded mile I had to run during P.E. I certainly didn’t believe I’d ever miss the traffic while I was driving to school, or the flights of stairs I’d have to run up and down to get to class. Never in my wildest dreams did I think I would miss these everyday nuisances. Now, I wake up to the sound of my mom coaxing me to get up in spite of the fatigue. The mile is replaced with walks at a painstakingly slow pace. I often can't drive, so traffic is a distant memory. And stairs, well, those are a thing of the past.
Life can change, quite literally, in a heartbeat. It happened almost two years ago on a regular Thursday morning. I was sitting in class, working on a project, when I suddenly collapsed. I don’t remember much from that day besides dizziness and pain. I went to the E.R., where doctors told me it was simply a hydration issue. I left, not knowing I would be back two days later, taken by ambulance after an episode lasting thirty minutes. From there, the spells would become more frequent. Fainting once a day became the norm. The problem was, the norm kept changing. Before I knew it, I was spending days at a time bedridden and unconscious. Small tasks like walking from my bedroom to the living room became impossible. There were times I considered it a “good health day” if I fainted less than ten times in twenty-four hours.
As time went on, the rules of this new life became clearer to me. A doctor’s office would become my second home, the pharmacist would know me by name, and checking my heart rate became second nature. Compression socks, blood pressure cuffs, salt, and IV fluids became my new best friends. I quickly learned that as long as my emotions were as sterile and cold as the environment around me, physicians would take me seriously. The second I became too emotional or raw, I’d be written off as a dramatic, hormonal teen.
Everyone had an opinion. Suddenly, people’s seventh grade biology class would make them more qualified than any doctor I was seeing. I was told an array of diagnoses from non-medical professionals, from rare cancers to potential parasites. I was told to try all forms of treatment, including meditation, yoga, and herbs. Dealing with multiple chronic illnesses is hard enough on its own. While everyone’s input came from a place of wanting to help, it only added salt to the wound. I was open to trying things, but unsolicited advice only made things worse, and was always phrased in a way that made it sound like it was my fault I was ill.
I don’t believe that everything has to be a lesson. Healing is not linear, and while there have been days of mourning and pain, I am working everyday to focus on the beautiful highlights of my life. My unbelievably supportive family (I love you guys!), my sweet dog (Kylo, you're just the best), my kind friends (you know who you are!), and my amazing opportunities at dance and church are just a few examples of the beauty I can find in the suffering. So, while waking up in pain is so difficult, walks are slow, and driving isn’t what it used to be, with His grace, I will continue to move forward. And someday, I will take the stairs.
“God has dealt very tenderly with me. I was not stricken down by sudden disease, nor were the things I delighted in all taken away at once. There was a gradual loss of strength and gradual increase of suffering, and it was only by degrees that I was asked to give up the employments in which I’d delighted . . . if I had been told what I was to learn through these protracted sufferings, I am afraid I should have shrunk back in terror and so have lost all the sweet lessons God proposed to teach me. As it is, He has led me on, step by step, answering my prayers in His own way; and I cannot bear to have a single human being doubt that it has been a perfect way. I love and adore it just as it is. . .” (Stepping Heavenward by E. Prentiss, p. 233-234).
I read these words nearly twenty years ago, wondering how I could obtain this wisdom without the losses that often produce this perspective. Suffering appeared to be the cost for transcendence, but it was a calculation I wasn’t willing to make. In His grace, the Lord had other plans.
I could never have imagined that becoming parents would have catapulted us into seasons of suffering. Many of you know that our children, Lilly and Isaiah, had severe feeding issues - feeding issues that lasted almost 7 years and involved countless doctor’s appointments, numerous specialists, multiple hospitalizations, an NG tube, and a long list of medications. We lived at doctor’s offices, watched our kids struggle to feed, and did mental and physical gymnastics to help them gain weight – for seven long years. How could our Herculean efforts consistently produce the words, “failure to thrive?” After years of tears and prayers, we witnessed the healing of our children. It wasn’t an overnight miracle, but a gradual, miraculous process where our children learned to eat.
After that lengthy season, I was surprised to find that our painful experiences would continue to increase exponentially. We made our way into another season of loss and turmoil, but I can now say that the fruit it produced was priceless. Psychoanalyst and Holocaust survivor, Viktor Frankl, said, “Everything can be taken from a man but one thing: the last of the human freedoms — to choose one's attitude in any given set of circumstances, to choose one's own way.” I work very hard to adopt this perspective, sometimes winning, and sometimes failing miserably. However, this refining process has tested my faith and produced perseverance, albeit forced.
Then, as grace would have it, we entered yet another season of hardship. My one and only daughter, our firstborn, fell ill. I haven’t shared this story publicly for a number of reasons, but I find myself wanting to scream two things from the rooftop: God is good, and, Lilly is all kinds of amazing. As we celebrate Lilly’s high school graduation just one month from now, I find myself reflective, filled with both deep sorrow and sincere praise.
Life over the past two years has been filled with more pain than any of us thought imaginable. Lilly has an extreme form of Postural Orthostatic Tachycardia Syndrome (POTS) along with a number of other chronic illnesses. POTS comes in many shapes and forms. For Lilly, it involves excessive syncope (fainting). Lilly’s condition has prevented her from attending her Junior and Senior years of High School in person and has left her filled with excessive pain every single day. She has been poked and prodded, has at least a dozen physicians, and has spent more time in ambulances, the ER, and doctor’s offices than in her 4 years in high school combined. My beautiful child often uses a wheelchair or walker and recently got a service dog to help her manage her condition.
Please hear my intention in sharing this with you. I write this story to convey my admiration. Lilly has experienced more pain than I could ever comprehend. She’s experienced all the typical high school drama – feeling left out and being excluded, being the topic of gossip, embarrassing moments, and on and on. But, what makes my heart truly grieve has been watching my child suffer. I thought I understood pain until I saw the last 2 years unfold. But, somewhat miraculously, the story doesn’t end there. Lilly gets out of bed each day and does everything she possibly can to maintain her grades (with no instruction since she is on a medical absence), takes dance lessons that she loves (despite her health), and participates on the worship team (despite crying out to a God who often seems silent). Her perseverance leaves me speechless. In so many ways, she has become my role model.
Anyone who knows Lilly knows she has a heart of gold. However, what people may not know is that Lilly is smart. Like, really smart. After winning a prestigious award for her grades and character, Lilly entered high school with excitement, determination and a fierce desire to pursue her academic and extracurricular goals. To Lilly, high school meant ambitious dreams and endless possibilities. As we now enter graduation season, its humbling to see how Lilly's life has unfolded. A friend, trying to process Lilly’s story, once mentioned that she thought Lilly was, for lack of better words, "destined to achieve greatness" in high school. I remember hearing these words and thinking, “but she did.” Lilly did achieve greatness. . . not in the way that I thought, but in every way that I could have hoped. Her faith and character are evidence of God’s grace. And, the Indian in me needs to share that she somehow achieved a 4.7 GPA in the midst of countless challenges!
As our family prepares for all the graduation festivities, my heart is filled with both joy and sorrow. Lilly’s path is nothing I would wish for anyone, but the fruit it has produced is priceless. My baby girl is graduating, and I couldn’t be more proud. I know parents are supposed to be role models to their children, but my child has become this for me.
I wish I could say, as Prentiss said, that His way has been the perfect way. But, where my heart feels otherwise, my faith steps in. In every loss we’ve experienced as a family, we’ve also experienced grace beyond measure. Once people are on the other side of their suffering, we often hear them say that their losses were worth it. I have learned, however, that I don’t need to make that calculation. Nothing, on this side of heaven, will make some of these losses “worth it.” But, I choose to believe that His way has been the perfect way.
God is, indeed, good. And, Lilly is all kinds of amazing.