Healing Cancer: A Lonely place for hope
Many lonely, cold, and scary places exist all over this planet. The darkness and fear that can envelop the thin chilly cot set up next to the hospital bed of a child diagnosed with a life threatening illness is nearly suffocating. The battle that ensues for the parents who occupy its small space is indescribable. Regardless of size, age, or previous strength, hospital beds have an innate ability to make any child look small and frail. In the dark, away from the comforts of home you lay next to your child unable to make it all better. IV lights, monitors, and instruments of all types permeate the dark—each attached when admitted. Sleep rarely arrives. If you nod off, your ear stays tuned to any change in the tempo sequence of beeps, indicating your child’s status. You cannot help but stay alert to the entrance of nurses, shift changes, and doctor’s scheduled rounds just in case.
During our first stay surrounded by our son’s friends and their parents, the impending solitude was almost ignorable. I imagined periodic visits of reassurance and hope, from family. In the crisis, you hope for support. Staying strong in the midst of hospital stays, appointments, schedule changes, procedures, medications, surgeries, tests, equipment and supplies, bills, forms and insurers, is nearly impossible. Somewhere between watching for symptoms, physical changes, side effects, pains, emotional concerns, and life’s normal challenges, strength emerges. We don’t really feel it. When we look in the mirror we rarely see it, but it pours out and we keep going. Maybe this is why others forget, assume, or prefer we don’t need the support.
When family fails to call, or show up for encouragement the feelings of hurt and rejection go deep. You want to believe your child matters at least to the rest of your family--if not the rest of the world. As weeks turn into months, no calls arrive, and excuses for not visiting or avoidance increase. If you mention the pain, they question your faith, or worse turn on you, leaving you feeling weak, petty, and more alone; so instead you pray. Pray to reduce the hurt/anger for the people you thought would care and pray to appreciate the strangers who step up to and try to take their place.
The comfort of a listening ear when we wonder aloud, why any child’s body would betray them so early, is no minor gift. A simple visit or a couple hours break from the anger, fear and confusion, offers a brief moment of self-care. We need someone to empathize when we curse the disease threatening to extinguish every dream we’ve ever had for our child’s future before its full potential is unwrapped.
If your child gets regular treatments in the hospital, you’ll see the same families often. As they greet you, and ask how things are going, you keep a good front of confidence and faith. Hence, your response stays the same and you move on, avoiding the urge to unload on fellow parents who understand, but carry their own burdens. You work hard not to look on in sadness, hiding the tears when you find yourself sharing a room with those families who never miss a hospital visit, who call the child and check on the parents, even for a routine stay. Watching families, show love in deed to try to alleviate the parents’ fear, fatigue, and desperate need for breaks is beautiful and heartbreaking. Especially as you try to do anything to reduce focus on the real threat of losing a child to an illness, you could never anticipate and they do not deserve.
So, you look on and you keep hope.
During a terrifying battle for life over death, facing the reality of perpetual solitude, you cling to faith. Late at night on a borrowed hospital cot, isolation settles into the deepest recess of your heart. During the day, it camps out like a dormant virus. It reemerges at night, attacking your vulnerabilities and can slowly destroy your strength and optimism. So instead of sleep, you pray, you bargain, you watch, all night, because rest feels furthest away. In the coldest part of the evening, you must make the decision. Once made, you know, if no one else shows up you will. When breakdowns happen, you carry them, full weight, alone and no matter what. You decide not to complain, show strength in the presence of others, and accept the times your child lashes out and only cry at night where no one else can see. When family doesn’t show up, you will either quit or stand, live or die. Watching your child through tears in the dark, as they battle any illness makes the choice absolute.