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 did not know until years later why I projected so far into the future; I now know that 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 do not remember who followed me, but I remember sitting and gazing into the face of a baby that could not yet open his eyes, could not support his own breath and could not 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 differently 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 of the information together and learned how to keep building our fence.
12
Quinn kept me focused and we kept building.