There are moments that serve as pivotal hash marks in the timeline of your life, that mark transitions between who you were and who you are after. For us, May 9th 2013 is a date we remember. It was the day after I turned 29. We sat in a dark room lit by the glow of an ultrasound screen. I was 20 weeks pregnant and our first ultrasound revealed a “thick nuchal fold” or skin on the back of our baby’s neck. Our hearts hung on every click of the keys entering nonsensical codes that would culminate in this hash mark moment: “There is a 50% chance your son has Down Syndrome.” I felt like I had been punched in the stomach. Time stopped. Everything was happening outside of me and I was not part of it. Adrenaline was rushing to protect me from the information and while I was fleeing, John was fighting.
John and I balance each other out in this way. He processes things very quickly and I do not. Each has our advantages and disadvantages. In this moment it allowed him to react to the information quickly and ask questions I would not have thought of until later. He handles what is in front of him in the moment. I cannot. When I receive information I have to fit it in to the big picture and it takes a considerable amount of time. But I can get to the big picture quicker than he can. In the world of information processing (and in this regard alone), he’s a sprinter and I am a marathon runner. He gets out of the blocks with lightning speed. I take my time. I meet him at the 100-yard mark after he’s burned up all his energy and help take him the rest of the way. We are a good team. By the time we had gotten home, that’s where we were. We both agreed that 50% was a weighted coin toss. According to the doctor this was the breakdown of the other half of the pie: 35% there was another serious issue and %15 that he was a healthy, typical baby. The largest piece of the pie was Down syndrome, and as we waited for our MaterniT21 free-cell DNA test to tell us for certain, we already knew what the results would be.
The person I was on May 9th was not ready for this. She was devastated, disappointed, terrified, and ill-equipped. For weeks I was an emotional train wreck. Fortunately, that is not the same person that is sitting on this couch typing this blog with an 8-week-old baby sleeping beside me. Every day when he rests his head on my shoulder, I run my fingers over his “thick nuchal fold” and wonder what I was so afraid of. The days and weeks that followed that spring I pored over countless blogs, memoirs and message boards. The parents were so hopeful and positive. I hated this. I wanted to know the gritty details of what I was in for. I thought the quicker I could find out how bad it is, the quicker I could get over it and arrive at acceptance. I thought they were all hiding something. I thought their positivity was a tactic, a coping mechanism to deal with their circumstances because if they talked about how hard it really was they would fall to pieces. On the other side now, I know that’s not true. They truly are happy and their path is one they don’t consider less desirable, because that is how I feel now. But I didn’t know that then.
A note on the stages of grief: they don’t happen chronologically and when you finish with one, you don’t package it up in neat box and open the next one. They sometimes occur simultaneously. They can cycle in and out in moment. You don’t see them coming. Just when you feel like you’ve arrived at acceptance, one jumps out of nowhere like a masked monster in a haunted house. Fortunately, most of what I was grieving were the expectations of a person who was still piecing together the big picture. Down syndrome was largely unknown to me. I thought that this diagnosis told me how the rest of the timeline would play out, that our son’s script was already written before he was born. But that wasn’t true, and as Down syndrome slowly became demystified, I wasn’t afraid of it anymore. Like a child afraid of the dark, once you realize there is nothing lurking in the shadows, you can sleep like a baby. If you happen to find this post because you’ve recently received a diagnosis, don’t be afraid of the future. You will be a different person, but you want to be that person. That person can be a very happy person. And not because they will “rise above” the circumstances. There is nothing to rise above. No monster under the bed. You just don’t know it yet.
There are a couple of revelations that helped me arrive at a state of solid acceptance and generally good things to know.
Easy doesn’t equal happy. I mentioned this in my first post but it is so true. I have spent a large part of my life looking forward to the next thing. I think most people do, and it’s not always a bad thing. It motivates us to push ourselves to be better. But it can cause us to look at problems with a narrow scope. You can spend your whole life chasing easy. It’s such a relative thing. “If only I had more money,” “If only I had my dream job…” Once we get the things we want, we start looking for the next thing we want. The problem in front of you is the biggest one, unless it’s not, and you get to decide how you look at your problems. I became a much happier person when I widened my perspective. Most of us have it pretty cushy. Easy is boring. You don’t really want easy. Life is difficult right now, and not because Owen has Down Syndrome. He really is no different from any other baby. Being a new parent is hard in general, but I LOVE these problems. Right now challenges really have nothing to do with Down syndrome. I know someday sooner or later they will, but when they do, I won’t be thinking about how I wish I wasn’t dealing with this and how difficult my life is. I’ll be thinking about how lucky I am to have Owen in my life and I’ll do anything to make him happy, not despite who he is, but because of who he is.
Love makes us better people, not intelligence. I put a great amount of stock in soaking up as much information as possible because I believe that the more you learn and the better you know your world, the better equipped you are to be the best person possible. I still believe this. And I don’t think Owen is disqualified from being an intelligent individual. Intelligence is how you apply information and love helps you apply it well. My goal is to help Owen thrive in both these respects and I know I have as good a chance as any other parent to do this, and possibly a few advantages. Down syndrome may affect how he receives information, but it won’t determine his value as a person.
When I look at Owen, I don’t mourn all the things he’ll never be able to do. All I see is possibility. Sweet victories. He works so hard to take in the world around him. Eyes wide open, kicking and shadowboxing. He gets stronger everyday. At 4 weeks, no one had told him he’s not supposed to roll over until he’s 4 months old. I’m not going to let anyone tell him he’s not supposed to do anything.