I didn’t know anything about Down syndrome before Ray was born. I had never met anyone with Down syndrome, and it wasn’t something I even considered a possibility for my life. Ray is my first child and I was 30 years old and healthy when he was born. In fact, I almost canceled my appointment for the Down syndrome screening because I was entirely convinced that it was a waste of time. I knew so little about it that I believed Down syndrome exclusively affected older women or those with a family history. I was living in Bogota, Colombia at the time, though, and the initial “soft screening” was a requirement at my doctor’s office. Abortion isn’t legal in Colombia unless it’s to terminate a “genetically flawed” pregnancy, they explained to me.
The day of the screening, my husband and I hailed a taxi from outside the international school where we both worked. As we barrelled through the city toward the hospital, I turned to my husband and said “what if he did have Down syndrome?” He shrugged, seemingly unbothered by the idea. “What if he did?” he responded, “would it matter?” I was stunned. It had never occurred to me to have this conversation before. I knew we shared a political perspective on this issue, but bringing that conversation inside our personal circumstances was a totally different thing. I was all at once more in love with him at the realization that he could unflinchingly love an imperfect child and also terrified that I could not. “You must be a better person than I am”, I joked, shoving the idea out of mind and changing the subject.
Just as I suspected, the screening confirmed that the child I was carrying did not have Down syndrome, and given the results of the soft-marker screening, the doctor adjusted my probability rate for delivering a child with Down syndrome to about 1 in a million. “I guess that’s relieving”, my husband said. “Were you really worried about it?” I laughed, “I could’ve told you he doesn’t have Down syndrome!”
My pregnancy carried on as textbook-normal, and as my monthly checkups turned weekly, the baby continued to grow, always revealing average measurements and a healthy heartbeat. Ray was due on my husband’s birthday, April 11th, and we planned to stay in Bogota until July when we’d fly with the baby to Maine to spend the summer with my family. After that, our plans were wide open. We had saved enough money to conceivably take a year off from work, especially if we stayed with my parents or rented a humble space in my little hometown. We had thought it would be fun to spend Ray’s first year hiking and playing in the snow while we searched for new teaching jobs abroad, ultimately with the plan of raising Ray overseas, bouncing from country to country until we got sick of the nomadic lifestyle.
On Easter Sunday, 2015, I felt my first contraction. By lunchtime on Monday, 5 days before expected, Ray appeared. My mother had flown down to Colombia to be with me for the birth, and in true Colombian style, the hospital room was filled with a cast of thousands. As soon as he was delivered, the doctor placed him on my chest momentarily before the nurses took him to be cleaned up. I noticed three things when I saw him for the first time: he seemed kind of skinny; he seemed kind of blue; his eyes were kind of a funny shape. As I laid there remembering a “What To Expect” article I had recently read that aimed to comfort women who didn’t initially find their babies beautiful, but instead weird looking, I saw that the nurses gathered around Ray were whispering. It seemed strange, but I had become accustomed to dismissing such things as “cultural differences” and not reading too much into them. Eager to hold him again, I craned my neck around the nurses who were still waiting for me to deliver the placenta and realized that Ray was being placed in an enclosed, mobile bed, which was promptly wheeled out of the hospital room before I could say anything. The entire medical staff rushed out of the room after him, followed by my husband who demanded to know what was happening. In a matter of seconds, I went from being surrounded by an uncomfortable amount of people and my brand new baby to being alone with one nurse and my mother, both of whom had no more idea than I did about what was happening.
“Tranquila, tranquila”, the nurse kept saying, trying to calm me. My mother was at my bedside now, holding me while I fell into tears, assuring me that everything was going to be fine. Minutes later the attending pediatrician, who I had only met briefly before, returned to the room. She removed her surgical mask, looked me coolly in the eyes and said “I believe your baby has Down syndrome. We need to do some testing. His life expectancy may not be very long.” It was clear there was no room for questions or further discussion. She replaced the surgical mask on her face, turned, and left the room. My panicked crying turned to heaving sobs. The nurse, who was now delivering my placenta, continued “shh… tranquila, tranquila… shhh” and finally left the room.
If it weren’t for my mother, I would’ve been alone in the hospital room. I will forever be grateful that she was there that day.
“Maybe it was a language issue”, she tried to reassure me, “I don’t know if her English is that good.” It wasn’t a language issue; the doctor spoke perfect English. “This is my fault”, I confessed, “I know this is my fault.”
“How could this possibly be your fault? This is not your fault — It’s nobody’s fault.”
“I went to that wine tasting at Christmas and I drank an entire glass of wine.”
“Wine does not cause Down syndrome, Taylor,” she insisted, stroking my hair and trying to calm me down.
“How do you know? Maybe it’s not Down syndrome. I did the test! They said he didn’t have Down syndrome. It can’t be Down syndrome. It must be something else. Or maybe he developed Down syndrome after the test because I had that glass of wine.”
I’m not sure that my mom could even make out what I was saying — I was frantic. I’m not religious and wasn’t raised to believe in the divine, but the next thing I knew, I was pleading skyward through rattled gasps — begging for Ray to not have Down syndrome. I was even negotiating that I’d take a different disability if his brain could just be “good”: “I’ll take deaf! I can deal with deaf… even a wheelchair, let him be in a wheelchair, just please let his brain work!”
My mom had stopped responding at this point; she just held me and let me say all of the terrible things that I’ll always wish I hadn’t.
The better part of an hour had passed before my husband came back. My crying simmered and I laid staring quietly at the ceiling. I remember thinking that I could just leave. I had barely seen the baby, hadn’t even really held him yet. I wasn’t attached. Would it really be hard for me to just leave the hospital and never look back? Maybe he’ll die, I thought. Maybe that would be for the best. I think that many of us in this tribe will carry the regret of these dark, initial thoughts inside of us for the rest of our lives. As we fall in love with our children and realize that they are, in fact, the complete and perfect humans that we always wanted, we feel deeply ashamed for ever having doubted their wholeness or their worth; for ever questioning our ability to fully love them. It’s a difficult, but important thing to talk about.
When my husband finally returned, my crying returned to a boil. I searched his face, desperate for some indication that it had all been a mix-up, that the baby was fine and normal. “What’s going on?” I sobbed.
“Our son is here!” he said, beaming, kissing my forehead as if nothing had happened.
“But…but what about…”
“It doesn’t matter”, he said, still smiling, “he’s fine… he’s our son and he’s fine. They just want to do some tests on his oxygen levels and then we can see him. He’s so beautiful, I can’t wait for you to see him all cleaned up.”
I was bleary-eyed and confused when he knelt down by the bed to hug me tightly. How could he act like nothing was wrong? Why wasn’t he crying? How could he be happy?
In the days that followed, I found it difficult to talk to anyone. I shuddered at emails congratulating me, and felt like I needed to “tell them truth”, as if I was being congratulated for receiving an award that I cheated to win. It was undeserved. Ray was being kept in the NICU because his oxygen saturation levels were low, and the first time I saw him was about 6 hours after giving birth. We weren’t allowed to hold him; he was hooked up to a million cables and lying inside a plastic box. Looking back on it, I should’ve fought like hell against all of this jacked-up protocol. I couldn’t, though. I was exhausted and still in shock. I wasn’t thinking. My husband started talking to Ray, crying joyfully as he wiggled a bit in response. I just stared at him, surprised, I remember, by how much he looked like my dad. That made me hopeful. “I don’t think he has Down syndrome”, I whispered to my husband, “he looks like my dad!”
“He does look like your dad!”
“If he had Down syndrome, I don’t think he’d look like my dad.”
I felt relieved. Maybe this was all a mistake, something I look back on one day and laugh at.
The next morning, I was allowed to hold him for the first time and attempt breastfeeding. The nurse assured me that it was going to be difficult for him and not to feel discouraged if he didn’t get it right away.
Then, something transformative happened the first time I picked him up. I remember feeling like I had just replaced a part of my body that I hadn’t realized was missing — like suddenly my arm was reattached and I could function again. All was right with the world, and for the first time, I smiled. He took to breastfeeding immediately and without hesitation. The nurses in the NICU couldn’t believe it. They told me they had never seen a NICU baby breastfeed so effortlessly.
He was capable.
He was smart.
I was proud.
The weeks after Ray’s birth were a whirlwind. Because Bogota is such a high-altitude city, he continued to have trouble saturating oxygen, so we were living tethered to an oxygen tank in our bedroom. We decided to sink most of our savings into obtaining an airplane-safe, portable oxygen tank and flying to the coast of Colombia, where we rented a room for 3 weeks, hoping that at sea level, Ray’s lungs would develop more and his breathing issues would resolve. For 3 weeks, my husband and I sat with him in a small hotel room, overlooking Santa Marta, Colombia and contemplating our new life with Ray and with Down syndrome. Sure enough, at sea level, Ray was able to come off of the oxygen support and we were given our first glimpse of “normal life” with him.
We returned to Bogota, hopeful that his lungs would tolerate the altitude this time. They didn’t. He had to go back on the oxygen and seemed to be struggling even more than he was before we left for the coast. “That’s it”, I said to my husband, “we have to get out of here.” In five days, we sold all of our furniture, hauled Ray and his oxygen tank to the U.S. Embassy to file for an emergency passport, and blew the last of our savings on the services of an expedited moving company and last-minute flights to Boston.
The second we landed in Boston, my husband clipped an oxygen saturation monitor on Ray’s toe. His levels were nearly perfect. “He just wants to be near the sea”, we joked.
We settled into my parents’ house in Maine and for the first time in 6 weeks, we could all breathe. Ray was safe and our lives with him could begin. We never needed the oxygen tank again.
Ray began to grow and thrive in the fresh New England air and we were able to reach out to local Down syndrome organizations and connect with other families who have become our dear friends and mentors in this journey.
Ray will be 3 this spring, and as his school-life begins, I know that we’ll have new mountains to climb and more decisions to make. But for now, we have found our normal. Ray is a world traveler, having been back to Colombia at a year old to trek through the jungle, and then touring through Europe in our Ergo the summer after he turned 2. He is learning English and Spanish, and will dance enthusiastically to just about any kind of music. He’s funny and clever and so profoundly human.
I spent so much of my life ignorant to full scope of human value and potential. Ray has changed the entire way I look at the world. I’m not sure if I believe that things happen for a reason; things happen, though, and I do believe that we always have the choice to find reason or create purpose in them. I’m grateful for the opportunity to parent a child with Down syndrome and I will continue advocating for a more balanced and accurate representation of this experience in mainstream society. So much of my fear and sorrow about Ray’s diagnosis came from a lack of information and a completely misguided perception about Down syndrome. I want other mothers who have recently received the same diagnosis to know that it’s not just going to be ok, it’s going to be great. Down syndrome has given our lives so much texture and beauty, and I can’t imagine it any other way.