My crocuses bloomed this spring! Bursting with life from the cold mud and slushy snow near my doorstep; they herald hope. They silently declare that life springs from death, just as spring wrenches free from winter’s icy grasp. Winter has reigned in my life through heartbreaking circumstances for fifteen years. The stinging sleet and icy winds have cut deeply. However, here I stand in the early spring sunlight, gazing in disbelief as hope bursts into bloom near my doorstep.
My husband, Mark and I are the parents of twin boys. Matthew and Luke were born six weeks early via emergency Caesarean section. Luke weighed in at 4 pounds, 14 ounces while Matthew followed at 4 pounds 7 ounces. The NICU doctors indicated Luke would progress normally while Matthew would have profound special needs, struggling throughout his life.
Our boys came home with an exhausting feeding schedule; sleep became a rare commodity. I began care-giving around the clock and had little contact outside the home. Mark’s vacation and medical leave elapsed; he returned to the task of sole breadwinner for a family with mounting financial needs. Being a caring and responsible son, his aging parents leaned heavily upon him for their increasing needs; their on-going care also became his responsibility.
Luke began to meet his development milestones with ease. Matthew struggled with the basics of eating, sleeping and holding up his head. He had his first seizure at eighteen months, which began the twelve-year saga of countless 911 calls, neurology appointments and hospital stays.
One rainy evening, Matthew’s seizures escalated once again and we called 911. I stood in the driveway watching the EMTs load my tiny son into the ambulance. As the red and blue lights reflected on the wet pavement, I remember thinking: “This faith-thing better work as I’ve heard it does. It better be strong enough to carry me through tough times, because right here is where the rubber hits the road!”.
I considered myself a strong Christian, yet my faith had remained untested. I knew in that moment more would be required of me than Bible knowledge and faithful church attendance. Battled-tested saints I’d encountered throughout my church-life spoke of faith, trust, and prayer at depths I’d never experienced. I desired that level of strength yet hearing them speak of “fiery trials” made me uncomfortable. Surely, there was a route to such depth without the “fiery trials”. The ambulance in my driveway was His answer.
Weariness and desperation were all I had, yet Jesus offered me His strength if I would simply pursue Him. Matthew and Luke needed a strong, godly mother caring for them with excellence and skill. Jesus offered me that strength, through total dependence upon Him. Choosing Him was my only viable option, so I embarked on an all-out pursuit of Him.
My prayer life was immediately transformed into a soul-sustaining connection to my divine power source. The Holy Spirit became my tutor. Scripture became my textbook. Obscurity became my schoolroom and heartache became my schoolmaster. Through the practices of spiritual disciplines, I cultivated the skills of a faith-warrior. My prayers, however, were not pious mantras whispered in sunlit chapels. My prayers were intensely real: tearful rants, anguished pleas and wrestling matches. During the long days of caregiving, I prayed continuously. I prayed for strength to carry on and for Matthew’s healing. In twelve years of praying, Jesus gave me one answer: “My grace is sufficient for you, for My power is made perfect in weakness.”
I bristled at His answer, and our conversations went like this: “That’s all you have to say when Matthew is suffering? You care for “the least of these”? Here we are—a special needs boy and his heartbroken mama! If you’re planning to show up, now might be a good time!” Patiently, He would point me back to Scripture and, in my brokenness, I learned to trust the heart of Jesus, rather than lean upon my own understanding.
Matthew’s needs were intense; he was sweet and affectionate, yet his abilities peaked at a two-year old’s equivalency. He required dressing, bathing and spoon-feeding and remained non-verbal throughout his life. The exhaustion and isolation that accompanies life with a special needs child forced my reliance upon prayer. Jesus was all I had. When Jesus was all I had, I discovered that He is all I need.
By the summer of 2012, Matthew’s needs had increased to the point that we both stayed inside constantly. To pass the long, hot afternoons I would often sing hymns for Matthew. As I sang, I would sink my roots deeply into the truth of the lyrics. He would often climb into my lap, listening intently or doing his best to sing along. As I sang, I prayed. I prayed for his release from his special needs, yet I knew, with a silent ache, that his release would likely be in Heaven.
Matthew’s seizure activity gradually increased to continual seizures. Had I not cultivated life-giving reliance on God during the early days of our journey, I would have certainly collapsed beneath the weight of what proved to be the final leg of Matthew’s journey.
I stood beside Matthew’s hospital bed staring down at him, lying motionless under heavy sedation. In my heart, I knew this day would come, but I never expected it to be this day. Matthew had always been in God’s hands; the same was true now. This Jesus, Who had become my Strength and Song through countless night watches, would prove Himself faithful once again.
As the neurologist explained their last-ditch effort of a medically induced coma, I stood in stunned silence. The neurology team conferred, made their decision, and Matthew was transferred to PICU where the procedure began. A friend stayed with me as I sat, numbly staring.
My sisters came to see me. In the dimly lit waiting room, we pulled our chairs together and cried out to the God of heaven for my son. Our tears flowed; my sisters held me as I prayed with heaving sobs. I heard myself repeating, “No God, not my Baby! Please no, not my Baby!’.
Following that prayer time, an image dropped into my mind. Jesus stood with His hand outstretched over an expanse of churning black water. He wordlessly beckoned me to follow. I knew what He meant. He wanted my absolute trust as He took Matthew home. His silent promise: “…when you pass through the waters, I will be with you…”
Heart-sick and physically ill from the grim reality ahead, I took up my post, a green vinyl recliner in the corner of Matthew’s PICU unit. I settled into my PICU routine, each day more nauseating than the last, as doctors spoke frankly regarding the end-of-life issues confronting us. I was reeling end-over-end in a sickening nightmare, made bearable only by the kindness of our faith-family. Their well-wishes became compassion through tangible acts of kindness: a listening ear and a latte, prayers and a Panera salad, Advil and open arms. After a week, Matthew’s eyelids began to flutter, his hands began to twitch. As he slowly came out of his coma, his seizures returned, but they were coming ten per hour rather than continuously. The doctors deemed the procedure a moderate success and we transitioned home on hospice within a week. Matthew made remarkable gains. Within a few days, he was sitting up in his wheelchair, eating and attempting a few wobbly steps. Within ten days at home, Matthew’s progress amazed the nurses, making hospice seem absurd. We arranged for him to return to school a few hours per day at semester. I was able to take him to his school Christmas party, allow him to walk in his gait trainer, and ride his adaptive bike. Truly amazing!
As the year began, Matthew’s regression was striking. He could no longer stand, even with assistance; he seemed to be in pain. He had made his stellar comeback; his body was winding down. Matthew was dying. My head pounded as my stomach clenched into a knot, but with quiet resolve, I extended my trembling hand to Jesus’ and stepped into the “churning black water”. We called hospice. A suffocating death pall settled over our house as we began our final vigil.
I gathered Mark and Luke, and we settled down on Matthew’s bed, prepared to stay with him until he crossed into eternity. How could we miss such an awful, yet beautifully holy moment as Matthew passing? So, there we were, holding his hands and walking with him as far down the pathway to Heaven’s gate as we could. Our tears flowed as I sang for him the same hymns I’d always sung for him. As his frail body slowly faded, he opened his eyes halfway. His cloudy gaze rested momentarily on Luke and me. He closed his eyes and within moments slipped into eternity.
His battle was over. He was finally healed, whole and free,—the seizures had stopped. The countless prayers I’d prayed for his healing were answered in a moment. I blessed the Lord for Matthew’s release, yet was crushed by the loss. I would never be the same again. Yet I knew, this same Jesus, Who had carried me though countless desperate days, would carry me through this profound loss.
The days that followed Matthew’s passing were raw pain. Standing in the funeral parlor looking down at your son’s lifeless body is not an experience for the anemic of soul. Standing silently before Matthew’s coffin, the truth of Scripture resonated within me: ”… to be absent from the body is to be present with the Lord.” Matthew’s life had been a struggle from his first breath to his last. I could only feel relief and joy for him. Matthew’s special needs were costly for me—exhaustion, helplessly watching as he suffered, and final tearing asunder of my very soul as he passed.
Yet, I bless this uphill journey, for where else, but in desperation, would the Lord of All Creation stoop to walk with me? Where else, but in pain, would the Suffering Servant carry my impossibly heavy load? Where else, but in loneliness, could I find such a Friend? Without the pain, I could never have known Jesus as I do, for by it, the Almighty One has become my strength, my peace, my comfort and the healer of my broken heart.
Following Matthew’s funeral, as friends and family returned to their lives, a thick, swirling fog descended upon my soul. I knew nothing except I was in deep soul-pain and that Jesus was my Rock. Despite the emotions that pulled toward the fog, I collapsed into the bedrock of truth, for there I was safe. There I stayed for innumerable days.
Matthew’s journey was over, as well as the journey he and I shared. Though he was in Heaven and finally healed, I lay gravely wounded beneath a cold, gray fog. A new journey lay before me, a journey toward healing and hope. Numbly, mechanically, I rose and began the journey. Along the way, a kind soul pressed into my hand a crinkly brown crocus bulb. Peeking from it’s top was a white-green shoot—life emerging from what seemed lifeless and without hope. That crocus bulb became the symbol of my new journey. How fitting that glorious life bursts from this drab, brown lump.
On Matthew’s birthday, I planted crocus bulbs in his honor—the very ones blooming at my doorstep. They raise their golden trumpets, announcing to this brutal world that, just a spring bursts from the icy clutches of winter, so Matthew is more alive and free than his best day on earth. Our joyful reunion is just as certain as the return of spring.