The Moment I Stopped Mourning and Started Being a Mother to My Son With Down Syndrome
At 4:13 p.m. on a random Thursday in September 2002, the woman I was exchanged places with the one I had to become. It was not a heroic decision; it was not a decision at all — I was jolted. Alarms and guttural fear heralded the event and an overwhelming desire to will survival into another human being overtook any pain I experienced. This was quickly followed by the murky realization that I was secondary to the existence of a six-pound baby struggling, grasping and clutching to remain in this world. It jarred me from a past where I believed in white picket fences.
My son, Quinn’s, birth was not one of gentle memories and swaddled joy. It was one of rushing and flailing. He entered the world without a sound; he could not announce his arrival with the typical cries of a newborn; he was drowning in his own fluid. Before that day, I didn’t even know he was a boy, and I didn’t know his birth and death had the chance of being closely entwined.
He started life troubled, not thriving, and I was unprepared — unprepared for my thoughts to immediately turn to “take me instead of him,” even though I wouldn’t see until many hours later. I didn’t need to see or hold him; I was a mom, and I wanted to breathe life into him. Medical personnel ripped my baby from me and rushed him to Pic lines, chest tubes and ventilators before I even got the chance to touch his cheek and revel in the miracle. He was somewhere fighting.
As I lay on the table in the recovery room, people spoke and I heard pieces of muffled conversations referencing priests, baptisms and last rites. “He can’t go before I meet him,” I wanted to scream, but I couldn’t find my voice. I knew I couldn’t leap from the bed because I just had a cesarean section. Flashes of light and memories interrupted me while I continued searching my mind for comfort. The unfamiliar faces that entered and exited my room offered no information. I wanted to crawl to Quinn; I wanted to grasp my baby from the clutches of death and run — run with him to a place where I could cradle him from the harsh entrance and struggles of his first minutes.
I made it to my room later that evening in a blur of familial tears and embraces. Standing up from the confines of my hospital bed while grasping the IV pole, I willed myself to take steps. In those first dark, hazy hours, I raged at the unfolding drama. My anger and disbelief flowed outward, and I wished for others to feel my pain. These moments still wrack my memory at times — moments when my soul showed a capability to turn evil. As I listened to nurses wheeling the white-picket-fence babies to the waiting arms of exultant parents, I wanted to extinguish their joy. The sound of those squeaky wheels on the freshly waxed linoleum served as a constant reminder that my son would never make an appearance in my doorway, and I wanted them silenced. Those parents didn’t deserve these gentle moments more than I did, and I yearned for what I rightly deserved. During those hours, I questioned any faith that remained. I cursed God and demanded deliverance from the dark. Finally, the nurse agreed to wheel me to the Neonatal Intensive Care Unit.
Once again I was unprepared — unprepared for the intensity of my love for this baby boy covered in wires, tape and tubes. That was the beginning of the journey of building our white picket fence. At 2:33 a.m. on the day after my son’s birth, I touched his small, swollen and bruised hand and found my new builder.
The next morning brought our first obstacle; I had to mourn the child that would never be.
In a suffocating and institutionalized room beside the NICU, a genetic counselor opened her chart of chromosomes and announced in a cold and matter-of-fact manner that my son had Down syndrome. That’s when I hit the floor — literally and figuratively. Familiar hands cradled my splintered mind and body and gently placed me back in my wheelchair. Watching the counselor’s mouth moving, I heard nothing, as every corner of my mind filled with the “what-ifs.” As family members stared motionless at the news, the invasion of thoughts included, “He will never attend a prom, go to college or get married. I am not this mother. I am not this strong. I am defeated.”
I didn’t know until years later why I projected so far into the future; I now know it was the beginning of the mourning. My son would never be the baby I hoped to welcome. My support system offered kindness and comfort, but ultimately nobody helps someone with that realization; I had to go straight through the grief. The intensity of the emotions in that small room almost broke me. Because of those frozen minutes, I understand the insurmountable weight that sorrow can bring. Those moments I spent under the poundage of lost dreams smothered me; I climbed and thrashed back to the faces staring at me.
My son had Down syndrome. Down syndrome. I repeated the words to myself over and over trying to digest my new reality.
Focusing on the dim lights and stained walls, I strained to stay with the conversation. When the genetic counselor entered the room from the hallway, the air left the room, and I found myself searching for oxygen. Then I realized that in the next room my son wrestled in the same way, and I woke up. That moment was the beginning of collecting splintered dreams and starting to build a new version of a white picket fence. Quinn was on the other side of the wall, and I inched through the tangles of medical terminology and uncomfortable change. I don’t remember who followed me, but I remember sitting and gazing into the face of a baby that couldn’t yet open his eyes, couldn’t support his own breath and couldn’t reach for me, and I changed.
The change occurred forcefully and within seconds. Without doubt, I determined that I would find strength because this boy deserved a mother that believed in his possibilities before he could do it for himself. Over the endless hours of that second day, I sat. I sat and spoke softly, stroked his beaten arm and solidified a bond. I connected with my son; it was different than expected, but it was our way.
Over the next days that turned into weeks, the most important moments of my life became watching numbers on machines. I monitored oxygen levels and heart rates while reading, studying and asking questions about medical terms and situations I never wanted to know. I spoke with doctors, counselors and experts in order to piece all the information together and learned how to keep building our fence. On Quinn’s fifth day, I left the hospital and Quinn stayed where he would for many weeks. The chill invaded my lungs as I walked out of the revolving door, and the endless tears started. In the car ride on the way home, I stared at the passing cars and the nonchalant people going about everyday tasks and the anger made it back to my thoughts. But, Quinn’s face flashed before me and the anger subsided. As has occurred countless times since his first day, he calmed my restlessness. His face stayed in my mind during those dense and dismal moments in the deepest part of the nights when the phone calls from the NICU shattered the silence. The nurses with updates — some depressing and some encouraging — the communication carried me through the night. Every day I rose and made my way to that face. My son. My reason.
The building of our new fence required that I learn the gentle ebb and flow of Quinn’s timeframe. Many days he and I took steps back only to step forward the next day. I learned significant lessons about myself and those around me. Previously, I always searched for the next goal or step, but with Quinn, I learned how to exist in the moment and savor every success. Quinn’s presence in my life gave me perspective on the importance of working on my fears and weaknesses while developing into the mom Quinn deserved.
Above all, I learned that strength grows when life destroys old dreams. I spent countless hours over the years in hospital rooms, in therapists’ offices and in improvised places of prayer. Additional diagnoses and health concerns arrived, and, at times, questions of fairness and faith clouded choices and blurred our vision. This never lasted long; Quinn kept me focused and we kept building. The many nights spent sitting and watching Quinn sleep carried me when life gutted my hopes and flung me to my knees. His tender presence in my life softened the blows and healed my wounds. People close to me shattered my spirit and walked out; however, those of stronger character and resolve entered my life. The baby I mourned in those first days traded places with a boy full of infinite possibilities who could accomplish all the things I foolishly dismissed in my mind as not possible. Quinn created everything I am, everything I strive to accomplish and everything pure and compassionate in my spirit.
Ten years ago and fallen with fear, I yearned for a white-picket-fence life; if I could go back and hold the woman I was then, I would tenderly whisper in her ear, ”Quinn will be a fighter, a giver of unconditional love, a stubborn force, a singer of ‘Jingle Bells’ in the middle of July and a savior. The trials will come, but so will a childhood that lingers a bit longer.”
If I could go back to those first tumultuous minutes, I would not silence the sirens or dim the fear because those moments are the ones that proved a catalyst for my transformation. Within frightening and frenzied moments exist opportunities for priceless gifts. People often say to me, “God gave you Quinn because you are strong enough to be his mother.” The reality is that Quinn gifted himself to me because I needed direction and purpose. He is my teacher and guide. I’m better because he reaches for my hand and holds it while he walks beside me. Quinn teaches me every day the importance of living a life of vibrant color and enthusiastic existence and that white picket fences belong on other people’s lawns.