Sitting in the Unknown
I’m twenty weeks pregnant, half way through a very much longed for pregnancy. I have two other children, one who came when I was twenty, the other when I was twenty-five. Both were easy and uneventful, my youth and high level of ignorance shielding me from most pregnancy anxieties. This time, however, things are different. It took us a long time to get pregnant, and an early miscarriage preceded this little one’s conception. Things have felt tender and tenuous.
At my first prenatal appointment, it was suggested that I get the blood work done for a sequential screening, a test that would look for possible chromosomal anomalies. I agreed to it, not thinking much of it. Looking back, I wish I had asked more questions, perhaps even turned it down. What could it tell me that I truly needed to know?
From the night I found out I would need to call my doctor’s office about test results until the day we went in to see a genetic counselor and have an ultrasound, a week elapsed. During that time, in fits of fear, uncertainty, and contemplation, I wrote and reflected on all that was going on.
Yesterday I found out that there is an elevated risk for the baby to have Down Syndrome. I cried…a lot. The tears came from a lot of different places: relief, fear, shame and guilt, confusion. My heart was (is) a messy place.
When I received a voicemail from my doctor’s office Monday night asking that I call the following morning to discuss my test results, I was in shock. I realized I did not ask enough questions, because, other than Down Syndrome, I had no idea what other possible anomalies that blood test was looking for. For about 16 hours I was convinced that my baby was going to die. How many times had I read one of those mommy articles that detailed the sad derailing of what was supposed to be a beautiful pregnancy into something tragic. A baby without a brain, a face, or vital organs.
That’s where, I suppose, the relief comes from. When I later learned they tested for three possible issues, Spina Bifida, Trisomy 18, and Down Syndrome, I felt like I lucked out. Down Syndrome. This is something I know, at least a little. As an educational technician, I’ve worked with little ones with Downs. As a community member, I see adults with Down Syndrome working and participating in local shops and community events. I have a sense of what kind of life a child might have with Down Syndrome, and it can very much be a happy one.
But I am also the sister of a person with special needs. In fact, my mother was also tested for Down Syndrome during her pregnancy with my brother. While her result was a false positive (as mine could also very well be; the doctor to whom I spoke emphasized this possibility), my brother did not come into the world without his own unique set of complications. He’s on the autism spectrum, and while the machinations of autism differ greatly from Down Syndrome, I don’t doubt the concerns of parents of each type of child are very similar.
I wonder if sometimes my mom wasn’t very lonely. The other mothers in my brother’s peer group had neurotypical children and dealt with very different issues than my mother. It was hard for my brother to genuinely bond with these children or others at school, and it felt to me, as an older sister observing, that many of these friendships were a bit forced. I feared then as I sometimes fear now, that my brother was lonely, too. When I think back on both my mother and brother’s experiences, I fear for my own and my child’s. Certainly the ins and outs of raising a child with special needs seem daunting, but it’s the social aspect that frightens me the most.
Who will be my friend? More importantly, who will be my child’s friend? What kind of social life will they lead? What will others think of them? I feel that I am a relatively open-minded, kind person, but I am often uncomfortable around people, especially adults, with special needs. If I am uncomfortable, how will others who are less open be? While things have certainly evolved since my mother was navigating this world with my brother (who was perhaps less endearing that your stereotypical child with Down Syndrome), I still think that being the mother of a child with special needs can be incredibly isolating.
It’s society, of which, admittedly, I’m an active participant, that worries me. Certainly there are daunting aspects to Down Syndrome or any other genetic or intellectual variance, but I feel as though I can work with that. It’s the wider world that bothers me. Even now, when the mere possibility of my impending child’s difference is on the table, many loving and well-meaning people in my life are approaching it as though something truly tragic will occur. The sad smiles and knowing nods are a little too much. I don’t mind hugs or wishes for best outcomes — after all, the easiest path would likely be a child without Downs — but I don’t want people to behave as though my child will be born with a terminal disease. I still want to be excited for this baby, for their arrival, and for their life. And I don’t want to spend the rest of my life trying to validate this person’s existence. I want them to be accepted just as any of my other children has been. But perhaps that’s too much to ask. Perhaps that’s selfish.
Panic is still washing over me when I think of next Tuesday and our upcoming ultrasound. Part of me, a quiet but firm part of me, seems to think everything will be okay. I haven’t quite pinned down if this sense of okayness is linked to my belief that the baby won’t have Downs, or to the idea that it will be okay even if they do. But then another part of me, something loud and brash, keeps imagining that ultrasound and the confirmation (or something close to) that the baby does have Downs, and what that will really mean.
I haven’t Googled anything yet, nor will I, not until I know this is something I need to worry about. But like I said before, I have a sense of Downs and what it’s like to be a parent of a child with special needs. There will be so, so much to consider. Even the rest of my pregnancy will be fraught with extra concerns and work. Perhaps I would have to start going to doctor’s appointments more frequently and farther away. Perhaps the sacred and beautiful cesarean I have been hoping for will be shifted. The baby may have to spend time in the NICU, and maybe I won’t be able to establish breastfeeding. Of course these are hypotheticals and I really have no idea what’s coming next. Everything, regardless, will be fine. In the end, the biggest thing is a healthy baby and a chance to hold and snuggle and love on that little one as much as possible. But I do still need to acknowledge these worries, and if these worries are valid, I need to give myself the space to mourn the loss.
So, I’ve been doing some reading. I found out a little bit more about the genetic screening I did. From what I’ve read, a false positive isn’t exactly how I thought of it. Like, I thought a false positive in this screening was like a false positive on a pregnancy test. You’re results are marked as positive, but the reality is you’re not pregnant. In actuality, it’s more like the test indicates you’re at risk, but there’s still a distinct possibility your baby doesn’t have any chromosomal issues. To quote one of the websites I looked at, “Most women with screen positive results do not have a pregnancy with Down syndrome.”
This was a simultaneously helpful and unhelpful discovery to make (but also something I wish had been explicitly explained to me when I agreed to take this test). I’m caught in the middle; it feels as though each new piece of information moves me a few steps forward and then a couple steps back. I want very much to be relieved by this information, but am afraid of that relief. What if I’m one of those women who does have an “affected pregnancy”? It’s little bouts of information like this that set me reeling, that make me see however much I think I’ve made peace with the situation, I actually haven’t.
Another example is the voicemail I got earlier today (can we all agree doctor voicemails just suck?). Next Tuesday, when I go for my ultrasound, I am now wanted a half an hour earlier so I can speak to a genetic counselor. I wasn’t anticipating seeing a genetic counselor until after the ultrasound, like several days after and only if the ultrasound was, for lack of a better word, suspicious. And yet here I am, now scheduled to see a one.
When I told my husband about the appointment with the genetic counselor he asked me how I was doing. I said okay, but then followed up with, “You know how I get when my plans are changed.” Meaning, this fucked me up. I don’t do well with changed plans, whether it’s switching up supper plans, or having to reschedule a much anticipated trip. Due to the emotions tethered to this situation, having plans change just really sucks. I had a plan in my head: get to Tuesday, see what’s happening, decide if it’s worth getting further testing done or trusting everything is okay, and move on. Bonus points for finding out the baby’s sex (what was previously our biggest hope for this day; the fact that the focus has changed also sort of blows).
Today is the day we go in for the ultrasound. I’m at work for a few hours, and then Mike is picking me up and off to Portland we go. I’ve armed myself a bit for the day. Rose and clear quartz, black tourmaline, and amethyst rest close to my heart. My prayer beads are in one pocket, the three tarot cards I pulled (now two sittings in a row) in the other. Last night, for the first time, I read exactly what the Hail Mary was. For some weird reason I’m always oddly drawn to Catholicism, particularly in times of strife. I must have been quite the devout in a past life. I’m also drawn to Mary during this time anyway. We’re entering Christmas time, Advent just a few days away, and this expectant Mother is on this journey with me. I think we are both a little anxious.
So, I’m ready as much as I’ll ever be to face whatever we get today. I am determined to leave Portland in a space of hope. I understand I may not have all the answers I want today, but I am reminded that this space of unknown is one I have asked to learn to sit in. I manifested this. You see, at the beginning of the year I made a commitment to the word Wander. I chose it because I have spent so much of my life planning and worrying about the future. I wanted to take a year to not plan, to sit in the unknown and be okay with it, to not worry about the future but be present in my life. To wander just a bit. Well, here we are, quickly approaching the end of the year, and I’ve never felt so clueless. This is a big unknown, and even once we get some answers, either today or later on, the unknown will continue, regardless of ultrasounds and test results. Having a baby is one gigantic unknown.
Today will be a good day. I will see my baby, hopefully learn their sex, and leave with sweet pictures of them. Everything else is superfluous. I mean, of course, not really, but those are the bits I’m hanging on to, the ties that are keeping me on the ground. I have remained surprisingly grounded in all this, and I’m very proud of that. There have only been a few moments of unnecessary grumpiness on my part, and that’s been within the last day or so. I’m getting so excited and anxious, and I am struggling to stay present, but it would be like that regardless. I hope this ability to remain mostly calm and present is my intuition letting me know that all will be well.
When I called my doctor last Tuesday (I can hardly believe it’s only been a week), I wrote down on a piece of paper, “You are going to be okay.” I say that to myself again: “You are going to be okay.” No matter what, I will be okay. That’s just how it is, that is how my life works. I am loved and protected and things always work out because they have to. And while a small part of me likes to object to that, I know that’s not the deepest, highest me. It’s that little tinge of earthly, human doubt that I must learn to set aside so that I may trust in God, in the Universe, in all the good energy I have around me. I am okay. Everything will work out.
Everything is okay. We went to Portland and met with the genetic counselor. May all of us be blessed to meet with a genetic counselor like Molly, should this be part of our paths. She was gentle and quiet, explaining everything with such grace and understanding. Though we had no answers yet, my husband and I were still able to let out the breath that we had been holding for just over a week. Truly, we would be okay.
For the next hour or so we got to watch our little one, who we now know is a Henry Phillip, wiggle and wave at us from the screen hanging just before us. My husband held my hand tightly the whole. We anchored one another, otherwise one or both of us might have floated away, entirely unmoored by the experience.
At the end, we spoke with the sonographer and, briefly, with the genetic counselor again. Nothing in this life is a guarantee, but from what they saw, Henry is an entirely healthy baby.
A final note: Genetic differences and “special” needs can be a difficult topic to write about. Many have preconceived notions or personal ties, often deep and meaningful, to this world. It is a highly individual experience. My hope is that I wrote about my own experience as authentically as possible, while also being mindful of what others have experienced. While I cannot deny my fear and trepidation around having a child with a particular set of differences, I also cannot deny the myriad of valid and beautiful and hard experiences parents are currently having. If anything in this piece strikes you as particularly ignorant or factually incorrect, please reach out. I would love to have the discussion and learn more.
