One year ago today we got the call. The one that changed our lives. Actually we got the call the night before. On May 9th, the day that we were told that there was a 50% chance that our baby had Down syndrome, I had blood drawn for a MaterniT21 test. On May 16th, 2013, we received those results.
May 9th I remember completely. I wrote 4 pages about that day that will most likely never grace the pages of this blog. I recall every detail… the flooded basement, what I had for lunch, what I wore, every word the doctor said, each failed stick from the inexperienced nurse… I distinctly remember her saying that the results would take no less than 7 business days, but we got the call on May 15th, just 4 business days later. John was at work and didn’t answer the unknown number because we were not expecting the call yet. That was a long night, knowing that the results were in, that someone was falling asleep with that knowledge, and that someone was not us. The next morning he called first thing. He walked in our bedroom while I was still in bed. “Positive.”
We didn’t talk much that day after that. We were dealing in our own corners for the moment. My grieving had started the previous Thursday, but I was relieved to finally have an answer and to be able to begin the process of allowing myself to fully accept it. John made an appointment with our local Down syndrome organization. I made one with the genetic counselor and ordered a stack of books from Amazon. That’s all I really remember doing that day. Things are bit of a haze from there.
After hearing diagnosis horror stories of news delivered with doom and gloom, I felt pretty good about our experience. I felt very confident in the hands of our maternal fetal specialist and I knew that she felt the responsibility of delivering this new information and the overwhelming task that we carried as new parents receiving it. She made a point to ask me at each appointment how I was doing on a personal level. She was there when we met with the genetic counselor who was very positive in providing us with all of the information about what our child would be able to do. The genetic counselor worked cooperatively with our local Down syndrome organization and gave us a folder full of sheets, pamphlets, and booklets. The director of our local organization met with us and gave us a tour of their brand new state-of-the-art facility and told us how proud they are of the class of students preparing to graduate college soon. My ObGyn called me to see how I was doing and ask if I had any questions. By the end of the week I was giving away copies of “Babies With Down Syndrome.” The support was there and we were taking full advantage of it. All of the information was at our disposal and it was overwhelmingly optimistic about the life our son would have.
Still at this stage, we didn’t know our son, and our focus had suddenly shifted from imagining all the limitless possibilities his life would hold, to now coping with how to meet the obstacles that were now most assuredly ahead. There were many more doctor’s appointments and ultrasounds. I remember looking forward to my first ultrasound, a chance to see my baby. Now I had one every couple of weeks and I dreaded them. All I was able to see were organ measurements and heart exams. The heartbeat that thrilled me the first time I heard it now struck fear in me that it might be the sound of a life-threatening problem. There was a major heart scare that sent us downtown to the children’s hospital a few months later. It started to feel like I was carrying a diagnosis, not a baby. Every positive thing I read about all of the things that people with Down syndrome can do was also qualified by all of the obstacles they needed to overcome to do them. All the while I was facing my own feelings about Down syndrome and becoming painfully aware of how often I hear the R-word on a daily basis.
I felt like I was aware of my child’s most heartbreaking moments before he had even taken his first breath, and it was overwhelming. Imagine if on your wedding day, someone told you the three biggest fights you would have with your spouse right before you walked down the aisle. The ones that would leave you doubting you could do this, and threaten to shake the foundation of your relationship. How confident would you feel headed to the alter based on that information alone? Cold feet much? Chances are if you’ve been married awhile, you may know some of those moments now. You’ve moved past them and they did not define your marriage. You may even have to search your memory to find them because when you think about your marriage, you don’t think about those fights.
It’s not a perfect metaphor for prenatal diagnosis, but my point is that it is a dangerous thing to only know part of the plot without access to the whole story. Your mind can’t help but fill in the rest, and it will most certainly fail. You’re supposed to meet your child on the day he/she is born with a blank slate. Your first impression should not be a diagnosis. Those first few months I played out every worst case scenario: every cruel schoolmate, every learning struggle, every health crisis. The unthinkable. I thought it all. And it consumed me. And it wasn’t real. These were not the facts. I thought that by imagining the worst I could prepare for it. And I don’t know that I could have arrived at where I am without exploring some of those dark places, so I don’t necessarily regret it. I am profoundly grateful for the opportunity to work through these feelings before Owen arrived so that his birth could be a time of celebration. But halfway through my third memoir, I had to stop. I was reading a very raw account of a father’s experience with his daughter’s open heart surgery. It was a beautiful book and I would love to finish it someday, but in that moment, it wasn’t helping me prepare. It was someone else’s story and I was desperately looking for our own story in it. Our son’s story was still very much unwritten. The only facts that I had about our son at that point was that he was a boy and he had Down syndrome… and that’s really all I knew.
I’m not going to sit here and tell you the fear is gone. Every day as I grow deeper in love with this little boy, I become painfully aware of how fragile life is and how it can be taken in a moment. I still read way to much. I still wake up and look at the video monitor in the middle of the night to make sure his chest rises and falls. I think most mothers, particularly new ones, quietly live with this fear. I’ve heard it said that to have a child is to have your heart walking around outside your body. That feels pretty accurate. And I’ll be honest, many of my fears still have to do with that extra chromosome. But I can say with confidence that there is not a thing I would change about him. Not a damn thing.
Those early days were rough, but they were just a chapter in a larger story. As this story has begun to unfold, I know now that above all else, it is a love story. It has certainly had moments where it has felt like a drama, a tragedy, even a horror story, but these days it’s mostly love mixed with a little comedy. I just feel lucky that I get to sit back and watch this beautiful life bloom and know that the world is a better place, and my life is better because he is in it.
Tomorrow This weekend, check back for Part 2 of this post. This part was about the Owen we didn’t know. Part 2 is all about the Owen we now know and love. There will be copious amounts of cute photos and shameless bragging on my son.