LIVING IN GRATITUDE
Written by Erin Grimson McCall ’10
I remember feeling a clear sense of duty entering my senior year at Brentwood Academy. As I prepared to go out into the world (not too far, just to Knoxville and the University of Tennessee), I felt it was my duty to arm myself with certainty. The best way to remain unshaken in the truth would be to build a protection of apologetics around my heart. My safety would be in stability, in knowledge, in control. After college, my early years of marriage and starting a small business further compounded my love for my own special strain of a god complex. I left college with no debt, married and saved for a house. "This is of my own doing! I earned this milestone and I am safe because I earned stability. I am being rewarded for my patience, my goodness, my faithfulness."
My husband and I became pregnant with our first child in the summer of 2021. We told our families and closest friends and began to dream about preparing our home for a new life. At our 20 week appointment, we were told that something was wrong with our baby's development. Within a whirlwind of a few days, we had been passed along to multiple specialist teams and eventually sent to Cincinnati, Ohio. Cincinnati's Children's Hospital is leading the way in innovations for treating our son's diagnosis, Bladder Outlet Obstruction. After an initial weekend of testing and fluid infusions, we sat down with a panel of specialists who outlined every possible outcome for our son's life, should he make it to term, should he survive at birth. Returning to our hotel that evening, we felt completely spent. I oscillated between sleep and tears. In those moments, my deepest fears seemed to come from beliefs entrenched deep in my spirit. I cried to my husband, "This cannot be real." "I just want him to have a normal life." "I hate this plan. I want them to work harder. I want them to find another way."
Looking back now, I feel so much compassion for that version of myself. At my core, I believed that safety and uncertainty could not coexist. Health was owed to my child. This was my right, my inheritance, my earned blessing for good behavior. I clearly remember wondering to myself, "Is this going to ruin our life?" This implied my core belief that if certainty, health and a standard of material wealth were removed from our life as a family, our chances at joy were diminished. This belief tracked with my lived experience to this point. The leaders in my high school life taught about countercultural living, but I didn't seem to know anyone that chose to compromise their standard of living through giving to the poor. So there must be some value to money. The environment I grew up in warned against the prosperity gospel, and yet the Christians around me drove expensive cars. So material wealth isn't inherently corrupting. I worked hard to save for a house. So there must be some correlation between my work ethic and the type of life I deserve. Trials may come in the short term, but ultimately life should feel protected and abundant.
During Wade's in utero treatment, we logged a lot of hours in dark exam rooms. Eyes on a monitor, we were always hoping to see enough amniotic fluid around our baby to sustain life. Seated next to us through these procedures was our Maternal Fetal Specialist, one of our spiritual pillars through pregnancy. Wade's treatments were performed three to four times per week by the time we arrived at 37 weeks of pregnancy. During each treatment, I would lie with my growing belly exposed. My husband would stand behind me, holding both my hands. Then, our doctor would silence the room. She created a silent moment before she took up her instruments to prepare her heart as well as her mind. The first time she called for the room to be still and silent, I remember thinking, "Our baby needs fluid, please hurry." My mind was racing, thinking that if we met our baby's need as soon as possible, we could be spared from a life of illness. She created time and space there in the darkness for us to pray. We prayed to different gods. Sometimes my prayers were only, 'Have mercy."
In the months to come, our specialist would sit beside me, guiding a needle into my abdomen, delivering fluid to our baby. In that time, she would ask about the parents we wanted to be. She would dream with us about the life our son could have. She was the first person we shared Wade's name with. Her response was, “Of course! Because we're making this crossing together." Our process in pregnancy was not about mitigating the severity of our son's illness. We were not fighting a battle with or for our son. Our pregnancy was about softening our own hearts. It was about releasing certainty and control so that we could be appropriate support for this new life. We hope to raise our son to desire peace in his heart and love for his community. We hope to raise him to be curious, to love humanity, and for his teachers to be many and varied.
The birth of our son broke open a new quality of life for our family. This young and improbable life has taught us so much about where our contentment lies. We are learning to deal not in what is owed to us, but what we owe to each other. We are learning that if our sense of safety is in our health, our savings, our command of absolute truths, we are done for.
Once Wade was discharged from the hospital after his first seven months of life, we relocated to Nashville so that Wade could be a Vanderbilt Children's patient and so that we could be close to the majority of our immediate families. We were sent home performing nightly at-home dialysis on Wade to compensate for his lack of kidney function. The technology to send a baby home on dialysis is relatively new, and we are so grateful that we were able to transition home for that period rather than continue a life confined to the hospital. That said, dialysis is a short term solution for a baby with no functioning kidneys. The long term goal was to find Wade a kidney of his own that would enable his body to thrive.
In the summer of 2023, our family received the news that I (Erin) was a match and that we were cleared to move forward with transplant. This news was so relieving, and it kicked off a summer of preparation for our family's next surgical milestone. On August 7th, 2023, Wade and I sat in connecting hospital rooms, being prepared by anesthesia for our kidney transplant surgery. Phillip waited patiently while my left kidney was removed, transported down the hall, and transplanted into our son's body. By the time I was awake and coherent, Wade's body was already responding to his new organ. We were yet again in awe of the innovations in medicine that allow our son a chance at a full life.
Our son is a transplant patient, which means his medical journey will be lifelong. Transplanted organs have a shelf life. The dream is that this kidney will last Wade anywhere from 12-20 years, but there are never any guarantees. If his recently transplanted kidney serves him for 20 years, we've received an undeserved gift. Whenever his body is finished with this kidney, we will keep moving. We are learning to live in gratitude for each day that this organ can serve his body. One day we will be back in another conference room, discussing the search for the next kidney that Wade will need for his next chapter of life. Our prayer is not that an imperfect organ will miraculously last forever within an imperfect body. Our prayer is that our hands will forever be pried open. Releasing control, releasing any excess we may acquire. That we would pass hope along to those walking this road after us.
To contribute to Wade’s future medical fund, visit cota.org/cotaforwade.
