Written by Sarah Tong
Posted 01-27-2020

A women with a shirt that says "Mama Bear" and her baby in a red sweatshirt and black cap.

My dreams were clear as day and embodied with life. In a small humble house, with just enough space: cozy, close and comfortable. The type of magic that will happen in this house doesn’t require a castle. A sweet sound of pitter-patter, one after another, is music to my ears. In a drowsy stumble- one, two, three, kids- pop into my room. These beautiful little beings still in a clumsy morning haze. My bed is full but I guarantee my heart is fuller. Small voices sharing everything; giggles, fears, and dreams. I imagined the good with the bad: sibling arguments, sticky surfaces, tripping over toys but above all unconditional love. On October 26th, I found I was pregnant with my first. June 5th, I gave birth to a beautiful little boy. June 27th, everything changed.

My dreams fell like drops into the dark ocean, never to be extracted again. These desires began flowing into the tide of “what’s if’s”. The contrast between my dreams and reality was deafening. All I heard was death, all I felt was fear. I looked down at my newborn in awe of such perfection. Then, I would go to the bathroom and collapse on the floor. I imagined a world without me would be a better place.

In my eyes, I did not fulfill my obligation of keeping my child safe, healthy and happy. I felt like a biologically unfit parent. I looked into the mirror with pure self-loathing. I would stare at myself imagining ripping my reproductive system out of my body with my bare hands.

I remember the headlines I used to read about the ethics of reproducing if you are the carrier for a disease. I used to be one of those sheep, who took a stance on someone’s condition but didn’t walk a mile in their shoes. After all, nobody, including me, wakes up one day and assumes that this is going to be their life. Geneticists have looked at me and said: “it’s not your fault”. It is human nature to figure out fault, and internally I took it all. There is no cure for my son’s disease that I passed to him. There is no therapist or depression medication that could save me from myself.

I had to save myself from my crippling depression. I had to open up my thinking that therapy techniques would work. The way society views carriers needs to change for carriers to view themselves in a different light and not be made to feel like broken goods. Carriers should be treated as more than just a pre-existing condition. Reproductive options should be attainable. IVF with PGD should be accessible and part of basic healthcare. Carriers are more than caregivers- they are people too. Although my dreams were taken from me, my new dream is a more compassionate America that stands up for those who have fallen into the cracks of our society. Carriers who are born into this world today deserve better.