Peering out the second story window I frowned with disgust at the sight of charcoal grey sky and soggy landscape. I had anticipated an early morning with exquisite sunrays and clear blue skies. Yes, I knew rain was projected for the day, but not until late afternoon & evening. Nevertheless, it had been an eternity since my last group ride; I was determined to carry on with the plan, resisting the urge to allow a gloomy sky and wet roads steal from me the joy of swiftly cycling along in a small but mighty peloton- a feeling that can in no way be described.
Underdressed, due to the unanticipated dreariness, I mashed my pedals one after the other as the five of us drifted along rain-soaked roads with pedal-deep puddles. Soiled water splashed unto my face from the quick-spinning tread from the wheels before me. The skin on my bare arms bore signs of hypothermia, intermingling with spots of red and patches of purple. Cold rainwater dripped from under my helmet, across my face and down my neck, gradually traversing its way across my soaked, frigid body to my shoes, which resembled tiny, overflowing buckets of water at this point. Although in constant motion my bones and muscles were chilled, the marrow and muscle fibers frozen in a state of purposeful inoperability. So much so that even as my brain sent panicked demands to my legs screaming “Unclip!! Unclip!! Unclip!!” as I slowed to a halt at a stop sign, my unresponsive fibers of muscle failed to do so. Regardless of how valiantly I tried, neither leg could gather the warmth and coordinated might to unlatch from the pedals. A block of ice, my numb body sat upon the still saddle. Ka-plunk! Down I went, body smashing hard into the cold, hard, wet tarmac all while my seat post and handlebars twisted in ways never intended.
I carried on for 30 miles of misery while I endured two hours of torture with chilled achy limbs while swallowing dirty rainwater and trying to keep the rubber on the road. Why? Because I find an unbelievable amount of enjoyment pedaling along an open road, particularly within a group of smooth-moving counterparts. Because my time on the saddle is precious- so few and far in between that any chance I have to ride is to be celebrated. Yet also because I knew at the end of this pleasing agony were dry clothes, a warm car and heated seats waiting for me when I returned to the parking lot from which this ‘joysery” all began. There was the assurance in seeing the light at the end of the tunnel.
Life with Linleigh has been eerily similar to that Memorial Day group ride. Although I treasure the blessing of a little girl who captivates my heart like no other, the most recent months could really only be depicted as bitterly redundant misery. Her steady screaming at any hour of the day for no evident reason has damn near depleted all life out of me. I am emotionally and mentally exhausted and not quite sure how much more, if any, of this I can endure. There are moments when even the deepest part of me screams with overwhelming grief and resentment “—- my life!”
To date, despite numerous consults with a slew of ‘-ologists’ and pediatricians, Linleigh’s bouts of hysterics remain untreated, and even more heart-wrenching, unexplained. Countless tests and examinations come back negative. Nothing contributes to deciphering what the hell is going on with the happiest kid I had ever known. Nearly half a month of inpatient hospital stays has yielded very little hope. X-rays, CT scans, MRIs, EEGs, blood tests and endoscopies have each shown nothing that would explain hours of blue-in-the-face screaming/crying. Even a diagnosis of ‘Burning Alive Syndrome’ (Yes, I’ve been told it is as painful as it sounds.) doesn’t explain Linleigh’s fits of rage in its entirety. The fury of hysterical screaming and crying even present themselves when she isn’t ‘burning alive.’ Furiously, even when she is suffering flare-ups of this rare syndrome, our only options are Motrin, or in extreme cases, morphine. Nobody wants to pump their child’s little body full of narcotics.
In conjunction with all of this, her cerebral palsy leaves her unable to communicate with us within any capacity- vocally, by physically pointing or any further way otherwise. Stuck in her own body, Linleigh’s only outlet is to scream bloody murder, sometimes for hours on end. Life as her father is miserable, and now more than ever is tip-toeing on the edge of unbearable.
Off the bike my very being is overwhelmed with a frigid chill of impatience, overcast with the pain and anger of being a helpless parent to a child who shows endless discomfort, consistent unhappiness, and endures excruciating pain. Many times, even more distressing, there is so little that I can do, merely because nothing works. Nothing brings back the unbelievably happy and joyful little lady that I had known for 3 years.
Physically I am beyond worn from ceaseless swaying of her growing body in unsuccessful attempts to soothe her. I am exhausted from extensive inpatient hospital stays with late nights and early mornings, and unending outpatient visits. My mind is overwhelmed with conflict: do we give her narcotics? Do we really even consider the methadone treatment a care team has recommended to us? Am I missing too much work? Can we make ends meet with all the overtime I’ve lost? Wait, did this bill get paid and did that paperwork get submitted? My existence verges upon the capacity that any human body and mind can take, bulging at the seams… but I am holding on.
I am holding on to enjoy the ride of fatherhood, despite the misery it currently brings. I am on a ride with smiles and brief bits of laughter between the pain, allowing me the chance to enjoy scenery I may have disregarded otherwise. I am holding on to what comforts and accomplishments I may find at the end of this tumultuous ride. I am holding on to the truth that though my soul is paralyzed by wrath, there is calm on the horizon. The agony accompanying this current ride of fatherhood is along for only this ride. This ride too will end and after it new rides will be embarked upon with sunshine, warmth, clear skies, and a thawed body ready to tackle the biggest of challenges… though this current jaunt is miserable, I center on enjoying the ride and focus on His assurance that greater outings are yet to come.
Hold on… just hold on. One more pedal stroke. One more bout of misery. Just hold on…
But as for you, be strong and do not give up, for your work will be rewarded.” 2 Chronicles 15:7
Let’s not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9
Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12