Take This Cup

Author's Note

This is strictly a parent’s view to illustrate how they processed heavy news of their child. It is supposed to be raw, and it supposed to follow them where they have gone when their world falls apart so others may feel unalone, implying the shedding of an aspect inherent to loneliness. It is not necessarily about their child, which you may also find on this blog. Please contact us if you would like to share your story of discovering your child's rare disease.

Thinking is to discover, talking is to play, writing is to work. Thank you for reading.

It’s a silent but chaotic moment to discover your child will be living with you the rest of your life. Not long ago, I stood at the gateway of an unimagined path: the diagnosis of my child's mental disability. For me that moment was a proclamation of death. The death of walking my daughter down the aisle, the death of dropping her off at college, the death of her riding her bike, going to prom, playing completive sports, sleepovers, and her future children. She would never know what it is like to hold her baby as I first held her in my arms, beaming and proud that she conquered a very trying pregnancy. It was the death of what I thought was certain, and that moment, shattering in its clarity, birthed a new unknown journey. One that I am very afraid to endure.

How can we look at a diagnosis that warns of relentless seizures that can strike any time and kill my eight-month-old daughter with any bravery? Will we miss them in the night? How can we look at the medical warnings of no verbal communication, or no walking, warnings we take deeply to heart since so few in the community ever have a conversation, and a tenth of community is facing cancer. I want to hear my daughter’s dreams and see her leap. What will her genes and their pathologies bring in their wrath, and will her liver withstand the barrage of medications? She’s so little. I go back and forth between what I hope is a logical realism about the situation where I tell myself, “She might not have those issues”, but then I remember the trails blazed to old age by so few others of her new world, pocked with pitfalls and pain. If I think of her smile fading before mine, I break. I don’t want her to suffer, and I don’t want to say goodbye to my child.

A philosophy of dead gods

Few things stoke the philosophical musings on the nature of existence as a child that must drink the cup of suffering. It was two weeks later after learning of my baby’s burden that a quiet voice whispered, “god is dead” as first declared in Thus Spoke Zarathustra penned by Nietzsche. I hadn’t really thought about the phrase since I had first read it during my angsty teenage exploration into atheism and agnosticism. As a young man, the phrase hurt me because it mirrored the dashed hope of the god of my childhood, a simple god crushed by seventh grade biology and undeveloped logic, an untested god, but now I ponder it with weathered, but new eyes.

The “new eyes” came at age 27 where I woke up at 3:00AM on a summer morning to a presence. I knew it was the God of the universe. He was alive, it was life itself, the room was magnetic, and the air moved though no friction was felt. After these past years, I now imagine Moses removing his sandals amid the flames of the burning bush of “I AM” making Itself known to the lowly Thou. I felt a similar need, one to reach closer somehow, to be cleansed of dirt. As the presence left, I wrote down notes of everything I experienced. Tonight as I reviewed those notes, I once again know I am the relational Thou.

Confronting harsh truths

Ultimately, Nietzsche’s proclamation encapsulates the profound sadness and disillusionment that can arise when our deeply held beliefs and ideals are shattered. It speaks to a universal experience, where the foundations of our understanding and the narratives we have built about our lives and the world come crashing down. In these moments of upheaval, we are confronted with a raw, unfiltered reality that challenges us to reexamine our convictions and rebuild from the remnants of our former absolutes. This process, though steeped in sorrow, also offers a rare opportunity that only chaos can offer, which is the opportunity to grow beyond expectations, an opportunity to attain rather than stagnate when the caustic burn of reality lets you begin from bone again.

Redefining faith

Faith for me has always gone hand in hand with how I process things, even when I did not believe. Many early memories are of my family’s traditional Lutheran Church with its unforgiving pews, repeating hymns, and distinct but not unpleasant smell of clean carpet and candles. Though not unpleasant in smell, I distained the entire event sitting for an hour listening to old people talk and sing when I could be outside playing or wrapped up with my Nintendo. It was boring so I would come up with distractions. One such distraction was coming up with my favorite number. You see, my grandpa was a mathematics teacher and he loved numbers. He was sitting next to me, and he had a favorite number so I figured I probably should too. He also had a reason for it being his favorite number, and that was because it was the date that he met my grandma. Well, I was in church, and I suppose I wasn’t too creative, so I multiplied the trinity with seven since that seemed like God’s favorite number, which of course landed me with a favorite number of 21.

I still love the number 21. I do odd things to make it manifest, like setting pomodoro timers for 21 minutes instead of the normal 25. I take three-minute breaks instead of five, and my long break is typically seven. The only casino table game I ever really played was blackjack. I try to select the 21st day of a month for events. I choose players like Tim Duncan wearing that number to be my favorite players and I have it integrated into almost everything I do on a computer in some form, and that is a lot of things. The number pleases me, it’s an anchor, and like when you buy a new car, its brand stands out to me more than all other numbers. When my wife asked me how many kids I wanted to have, I replied with seven, because I couldn’t say 21, and seven is the next best thing.

I also still want seven kids. It seems like a crazy thing to say, but when you have a child, they make you the best form of you that you can be. I at least know that is true for me because I clearly see the selfish person I was. Now all I want is to protect them, provide for them, and make their hopes come to be. I hurt when they hurt, I smile when they smile, and I will do everything I can to make their life better.

A child in many ways can become our gods. We do everything for them, we want to see them raised up, we want to share in their glories, and we want to immortalize them through our dreams for them or the dreams they choose to share with us. Whether it is a dream to grow the family business or a pathway you deem as success, those dreams are exactly that, dreams. My dad’s little gods for a time were his sons the baseball players. He loves sports and I dominated as a fast pitcher all the way into my first championship. I was so excited that I proceeded to walk every single batter for several innings until I was pulled. The game was blown, and I was to blame. We were both talented, but my older brother was great. Dad and he won three championship in a very competitive league where he batted against future major league pitchers and took them to the cleaners. My brother continued to be one of the best batters in the north state until a hanging curveball shattered his nose and dyed his white uniform a dark red. He finished the season and informed my dad that he was done, there was no love left for the game and the broken nose tipped it over the edge. A couple days later, I told my Dad that I was also quitting, though mine was for the wrong reasons. Dad threw his hands in the air, shook his head, and walked away. These roads to what we envision our child as or what they will become are rarely, if ever, walked as we imagine. They are beyond our control just like all gods.

An ultimate transformation

Never has this analogy of the child idol been more apparent than in the story of Abraham and his long-desired son Isacc, the promised child. Abraham waited longer than any for the thing he desired most while being comforted by his God with this promise, yet when his son comes of age, that same God demands more than any parent should ever pay, to sacrifice their beloved child by their own hand. You can imagine the heavy footsteps, the mental pleading, the what ifs, and the whys. “Why would my God ask this of me?” Why must my son and I drink this cup?” Only a parent can look at their child’s questioning eyes and feel that level of hopelessness, with hopelessness being the absence of the end of suffering.

It’s a gut wrenching feeling to face the reality of parental dreams versus a child’s destiny. They are a you, they are an I, they are a me. They are not your dreams, they are your untested dreams, and untested dreams rarely withstand the fire where your parental dross will be melted away until they stand unadulterated as what they were always meant to be. Yes, the immortal values you instill will stand the inferno’s blaze, but all that is not etched in the frames of truth will wither like paper. Our tiny gods must die so that our child can live as the mantle you gave them is not one they can wear. Only then, can we look at them and love them as the tested inevitable name written so long ago.

A deity or concept of the divine that hasn't endured the rigors of human questioning and existential challenge is not a god to adore. Our hesitation stems from a deep-seated need for authenticity and resilience in our spiritual beliefs. An untested god, untouched by the fires of doubt, suffering, and human experience, may seem distant and unrelatable, lacking the depth and wisdom forged through adversity. We seek a deity who understands the human condition, one who has been scrutinized and questioned, and yet remains undeniably the pinnacle of the archer’s aim missing no mark, wind, or no wind. Such a God not only mirrors our journey through the complexities and tragedies of life but also offers a profound connection, anchoring a faith in a reality that resonates with our deepest trials and triumphs.

Without the deepest darkest most despicable depths, then how can the hero be authentically trusted to be everything all raise them to be. Yet the hero is more than one who comes out of the pit, but is one that transcends all shadow of doubts from the beginning to the end, the complete story marked and marred with every stain overcame, with every word left spoken, with every fire walked through to the point that there lies no doubt of capability for when doubt remains of the unknown trial, then perfection is always missed. Without the worst of all things happening, then how can we know what the absolute good of good can be where the absolute high of highs can only be made true through the lowest of lows. The god of our minds must die so that The God may reign.

A paradox of divine testing

Yet how can there be value in the trials of someone who knows all the moves in the chess game? The ram of the thicket offered, the relief settles upon the actor, and Abraham’s audience’s whys come back. If you were going to offer up this ram in his place, why then would you ask if you knew what the actor’s response is, was, and always will be in thine eyes? Why must the act play out if a predestined result always waits? Does that not muddy the waters of virtue if the deliver’s right hand circumvents that same deliver’s voracious left? The actor walks through his motion, his risk an illusion, his performance inconsequential. It’s of course the broader exploration of the dichotomy between darkness and light, despair and victory, a place that I teeter between, that Job first explored.

“Who is this that obscures my plans with words without knowledge? Now brace yourself like a man; I will question you, and you shall inform Me. Where were you when I laid the foundations of the earth? Tell me if you have understanding.”

The crushing and unanswerable question in Job 38 lays the actor low. Sober, a quiet resonance of the first music of the Word sounds as your heart knows that the chess game itself would not exist had not the Word sounded. We cannot hold the value of why in our hands because it cannot fit. The blind man perceives the shadows of the world, the deaf man perceives the shadows of the sound, and all destined for death will always only see the scope of infinity that we are given while infinity stretches beyond.

Abraham and reaching

With Abraham you either see an obedient mature faith in an old man knowing his Lord’s nature, or you see a cruel god and a weak man atoning out of fear of what his god will do. What do I have with my daughter; the human sacrificed to struggle, born out of love, with no choice to tell God, “No, I will not put her upon thine altar”. Is it His mercy to ensure that I cannot fail where Abraham succeeded? “Dear God why must my family drink this cup and where is the ram waiting to be taken instead?” I don’t want this cup, not for daughter, not for my wife, and not for me.” If not Abraham’s ram, show me your unbridled glory so I may put my hand over my mouth and repent in dust and ashes as did Job. Show me why! Then I see Christ staring through his crimson tears at his Father asking if the ram will appear from the thicket only to hear the answer that all humans must sometimes hear, “No.”

The “no’s” in life are frequently the most merciful thing we can hear. I reflect on the times I’ve said no to my two-year-old son, “No, don’t touch that” being chief among them when he reaches for an electrical outlet or the stove top. For us the adult, it is the easiest thing in the world to know why he shouldn’t want to touch those things, but for him, there is nothing more that he could want at that moment. The no’s must continue because you cannot let your child touch electricity. Its beyond them, its beyond what their heart can take. The answers will not make sense until they feel the electricity course through their body, the smell of burning hair, and the pain. Then they will know. They will know the pain that only a human can contemplate, curse, recoil from, understand. But the most merciful no’s are from a much larger God than the one we thought we understood, not us or our dreams.

Now, my old god is once again dead as God once again reveals Himself, bigger, more, complex beyond the cave which I thought was my world with my daughter Charlie, Ring 14 Syndrome, and all, her as a beckoning light cast from His mouth. I am no numerologist, I do love patterns, and I distain finding them where they do not exist, but remembering back to my notes written on the morning I received new eyes, I now see a pattern. About six months after that morning, I was thinking to myself when a doubt came into my mind, “Did that really happen, or did I imagine it?” I pulled up my notes on my phone. They were titled Burning Bush. I began reading and stopped. The first line reads “3:00AM Tuesday July 21st.” I smiled. He woke me up at 3AM on the 7th month’s 21st day, a day and time that I would love, one sign worthy to me, of Gideon and his fleece. Now back to tonight as I write this passage, I review those notes once more to find that like Gideon, I receive proof twice.

At the bottom, the last sentence plainly reads;

“I recorded this initially as the 14th but it is in fact the 21st of July.”

14, my new favorite number.