I was sitting at my desk staring at my phone as my colleagues started walking by my office doing as the voice on the PA system was instructing – heading toward the emergency exit and evacuating the building, when a friend of mine stopped and asked if I was coming. No, I wasn’t going anywhere until my OBGYN, whom I had paged moments before the fire drill started, called me back. I had a message the night before that she wanted to talk to me about the results of my prenatal screening for genetic abnormalities. She left her pager number and asked that I page her first thing the next morning. So I did. And I wasn’t moving until I spoke to her no matter what the voice on the PA system had to say.
I didn’t have to wait long. She called, nervously informed me that the odds were one in six that my baby had Down syndrome and told me I could come to the hospital now for an amniocentesis. I hung up the phone in time to join the last of my colleagues to head toward the emergency exit. I remember telling my friend, who waited with me for that phone call (that would be the first in a series of events that changed me into the person I am today) that I couldn’t leave work, that I had something to finish before the end of the day. She wondered why I was thinking about work right then. I wasn’t really.
So as soon as we exited the building I called my boyfriend, Jonathan, and made plans for him to pick me up and bring me to the hospital.
I remember sitting in the waiting room surrounded by pregnant women, wondering if they could see the terror and grief in my eyes, different from the eager anticipation I should have felt waiting for an ultrasound and a peek at my growing baby.
Only this time the ultrasound was required for the doctor to perform the amniocentesis that would tell us whether or not our baby was the one in six.
We opted to pay for a private lab to analyze the amniotic fluid so that we could have the results within two to three business days instead of the weeks to a month that it would take the hospital to provide the results. It was Thursday, October 5, 2006, and this being a holiday weekend meant we would only get the results by the following Tuesday or Wednesday. We had been planning on going to visit family in London, Ontario for the long weekend. Against the advice of my OBGYN, we decided to stick with that plan.
Jonathan grew up in London and my sister moved there with her husband shortly after they got married so we both had family there. Although it was nice to see everyone, it was probably the longest weekend of my life. The support our families showed was overwhelming and so very comforting (still is all these years later). His mother took my hand at one point, looked at me with so much compassion, and said that everything would be fine. I thought she meant that it would be fine because my baby would surely be among the 5 in 6, but she knew then what I know now. Everything would be fine.
I drove back home with my mother on Tuesday because Jonathan left a day earlier for work. I pretty much white-knuckle held my cellphone the whole way home. But no call came on Tuesday. The call came on Wednesday when I was at home with my best friend, who was on maternity leave with her four-month-old daughter. Following protocol, my doctor tried to tell me that I had to come down to her office to discuss the results but I begged her just to tell me. I would go to her office but I had to know now.
“It’s Down syndrome isn’t it?” I choked out. “Yes” she whispered.
I can’t remember if I actually threw up but I certainly felt like I would.
The next thing I remember is sitting in her office with Jonathan discussing our options. I was devastated but my doctor didn’t seem to be doing so great herself when something occurred to me. She was quite young, and I asked her if this was her first experience with Down syndrome. When she said yes, I said it was my first experience with Down syndrome too. But this attempt at humour did not much ease the tension, especially when it became clear to us that it was presumed and expected that the pregnancy would be terminated. She started explaining how it would go and how soon the procedure could be booked. She was so surprised when we said we hadn’t made a decision to terminate and didn’t know if we would that she actually asked why we would have the amniocentesis if we didn’t plan on terminating. If I have to explain why, you have never been told at seventeen weeks pregnant that your baby had a one in six chance of having a syndrome you know nothing about and that this diagnostic test is the only way to know for sure.
Over the next couple of weeks we shared our news with family, friends and coworkers. It was difficult to break the news. It was still so fresh and I had a hard time controlling my emotions, so in addition to sharing news that makes it hard to know how to respond, I made sure to maximize the discomfort when I would start blubbering before finishing my speech. The first time I got through it without crying was such a triumph! Sadly, most of the people I spoke to, other than close family and friends, shared my OBGYN’s opinion and thought termination was the only reasonable option. So many marriages of parents of children with special needs end in divorce. We could try again and have a healthy baby within a year. And the one that was most hurtful and uninformed. And if I’m being honest, totally arrogant and ignorant: it’s not fair to the child to have to suffer through a life not worth living. Or some such hogwash.
But I did consider all my options. I am so grateful to have faced this part of my life with this particular man, who was braver than me and kinder and more loving, compassionate and selfless than any other person on this planet could have been. He told me he would support me in any decision I made, even though he would be just as affected as I would be by the outcome of that decision. At the same time he did everything he could to ease my anxiety, helping me find information and support, going to meet families who had a child with Down syndrome and just being the voice of reason, sharing with me his belief that it really would be fine. The one time he couldn’t hide how deeply he wanted this child was when I insisted he tell me honestly what he would do if the decision was all his.
There were tears in my six-foot-three uber-male’s eyes when he confessed that he knew it wouldn’t always be easy, but no matter what he didn’t want to hurt our baby.
I didn’t want to hurt our baby. Of all the considerations that played about in my head for two weeks, this was the one that would make me weak in the knees, nauseous, unable to get past the fear of the grief that would be with me forever if I made the decision to terminate my pregnancy. From the moment I found out I was pregnant I had been falling in love with this baby a little more every day.
I think the tipping point came one particularly difficult morning after very little sleep, while driving to work with Jonathan. I was trying to tell him about the thought that had kept me tossing and turning all night. I told him how I tried to imagine how it would unfold if I were to terminate. I saw myself lying on a medical bed, suddenly changing my mind because I didn’t want to lose my baby, and being told it was too late, the baby was gone. Now, when I was actually saying these words to Jonathan, I was a hysterical mess of tears and snot, sobbing, barely able to get the words out. He pulled over and stopped the car because, obviously I wasn’t going to work just yet. But I was pretty sure I was keeping my baby!
We will be celebrating our 10th wedding anniversary on December 11, 2016. The day of the tipping point I had another epiphany. I thought we needed something to celebrate after all the sadness, and I asked Jonathan what he thought about getting married, as soon as possible. We had been planning a wedding since he had proposed a few months earlier, but we thought if we still wanted a bigger wedding with all of our family and friends, we would do it eventually. So we made the arrangements at the Montréal courthouse and about a month and a half later we got hitched with only our best friends, Julie and Diego, our son Ben and Julie’s daughter Olivia in attendance. We didn’t tell anyone until the day before our wedding when we invited my mother and my father, my brother and my grandmother to a celebratory dinner after the ceremony. At that moment, all we wanted was to turn the page and start our new life together, as husband and wife and parents to this beautiful little girl whose arrival we were eagerly anticipating.
Emma will be ten years old on March 20, 2017 and I truly can’t imagine my life without her. She is a kind, compassionate, courageous, funny, bright and beautiful little girl and I could not be more proud of her.
There are so many reasons that I wouldn’t change anything about her, not one little bit. If anything had been different, would I have met all the amazing people who’ve been there to offer advice, support, comfort and friendship ever since we found out that we would be the parents of a child with special needs? Who would I be now if she hadn’t taught me how to be more aware, less fearful, more open, less judgmental? If she hadn’t shown me what’s really important and how strong I could be when it really matters? She has made me a different person, a different mother, a different wife and I really like this me better than that other one sitting through a fire drill waiting for a phone call. So even though I know she will face challenges that no parent wants to see their child face, I wouldn’t risk changing any of it, because she is perfect to me, and I know that she is up to the challenge.
I am a mother of 21-year-old Ben, nine-year-old Emma and seven-year-old Sam. I met my husband online in March 2005 and I am fortunate to have found the best partner in parenting and every-day life! We live on the West Island of Montreal with our kids and our crazy pup Murphy and I work as a corporate paralegal in a law firm downtown. Although I don’t get out as much as I used to, when I do go out, an evening of karaoke is my favorite!