The Story That Started It All
(originally posted at http://www.babycenter.com on September 13, 2011)
I’ve heard it said that people come into our lives for a reason
Bringing something we must learn, and we are lead to those who help us most to grow if we let them
And we help them in return
Well I don’t know if I believe that’s true
But I know I’m who I am today because I knew you
Like a comet pulled from orbit as it passes the sun
Like a stream that meets a boulder halfway through the wood
Who can say if I’ve been changed for the better
Because I knew you
I have been changed for good.
~Wicked, For Good
I should have known right from the start, right from before Sarah was Sarah or even anybody, that she would be remarkable because the beginning of her life was so remarkable.
“We should have a baby.”
It was the spring of 2010, just after Easter, almost a year to the day before Sarah would be born, and we–Sarah’s mother and I, and some of our closest friends at the time, including the man who would eventually step in and become something much more than I could have ever imagined, the man I would later fall hopelessly in love with–were all sitting on her newly-built patio, soaking up the springtime and each other’s company. The question took me by surprise. It was something we had talked about, years down the line, as a possibility if she remained single and I was in a place where it made sense. I would donate the sperm, she would do IUI, and we would share custody 50/50. But right then, we were both single, in our early 20s, and I was doing a thousand things at once to establish myself professionally. If we were waiting to be in the right time and place in our lives, this was not it.
“You mean now?” I remember feeling strangely excited, in spite of everything, at the idea. It didn’t make any sense, but it felt right, and sometimes, I’ve learned, you have to listen to what feels right, not what makes sense. So when she nodded and smiled, I shrugged. “Okay.”
And that was what started it all.
It would be four months before she actually got a positive pregnancy test, but it only took two attempts for Sarah to come along. The other two months were spent planning. I am, and always have been, a planner. Type A, by the book, organized to a fault. We talked about college funds and custody and the future–how we would approach partners and work and everything else that a child complicated–and we discussed prenatal care and prenatal testing.
“I would want to abort for any birth defects,” she said. “I want the quad screen so we can be sure.”
I felt uneasy. Growing up with a severely delayed sibling had given me a different perspective than most on the subject. But it was her body, not mine, and so I agreed. It made sense. It seemed like such an astronomically small chance that anything would be wrong, given our personal histories and ages, and there was absolutely nothing to worry about.
It only took two cycles for her to get pregnant. I was surprised. I guess I had expected it to take a lot longer, after reading so many stories about people who had to wait years for IUI to work, and I felt a little blindsided. For the first time, I felt like maybe this wasn’t the right thing to do. But it was too late to turn back, so I jumped in with both feet instead.
Her pregnancy was uneventful. I went to every appointment, and in between appointments, I read everything I could about pregnancy, about my developing baby, and about what to expect after the baby got here. It was impossible for me to be there all the time, so instead I prepared myself in other ways.
We had the NT scan. Normal. We had the quad screen. Normal. We found out that our baby was a little girl. We decided to name her Anais. Back then, we had a one in one hundred thousand chance that she could possibly have anything “wrong” with her. I’ve always held onto that. I try to tell myself when it’s hard that she wanted to be here, and she was doing everything she could to ensure that she would make it here to teach me a lesson.
It was around 4:30 in the morning on April 20th when my phone rang. The baby’s due date was five days away. I was on constant watch.
“I think it’s time,” she said. “Don’t panic yet. I just have a feeling.”
I called my boyfriend of then three months and told him that the baby was coming and I’d let him know when we got to the hospital. I remember grabbing the little bag I had prepared for her with the things that I had picked out for her and the letter I had written to her outlining my hopes and dreams for her future, and then I remember lingering in the doorway to her nursery for a little while longer, thinking about how everything was about to change. I had no idea how right I was.
To me, labor went by in a blur. I’m sure her mother has a different idea about that, but I can’t remember anything about it after getting to the hospital, and at twenty-two minutes past high noon, our sweet baby girl stormed onto the scene.
“It’s a girl!” they said, and jubilantly held her up for us to look at.
I knew, right away, when I looked at her, that something was different. My heart dropped into my stomach. I glanced nervously at her mother, but she was rapt with new motherhood and her baby girl, for the moment, completely oblivious. “You’re beautiful,” she kept saying, over and over. “You’re perfect.” I didn’t have the heart to tell her otherwise, but when I finally got to hold her, study her sweet little face, the palms of her hand, I knew. I knew that my whole world had just changed in ways that I hadn’t bargained for, and I didn’t know how to handle it.
She was a few hours old before anyone came to talk to us about it. In many ways I’m resentful of the medical staff, even in spite of all of their support and efficiency, for not seeing it right away, or for prolonging what was sure to be her mother’s grief. “We have reason to suspect,” the doctor said, “that your newborn daughter has Down Syndrome.”
I wish I could remember what my thought process was when I opened my mouth, but to this day–five months later–I can’t imagine what possessed me to look up from my daughter’s sweet face and say, “I know.”
Her mother stared at me. “Youâ€¦what? No. That’s impossible. She’s not–she’s fine. Christopher.” Her face flashed a million emotions. Fear, regret, pain. In that moment, I knew I had betrayed her, whether unintentionally or not.
The blood test came back before we left the hospital, and her mother spent those few days clinging desperately to any shred of denial she had left while I spent them doing what I do best–reading. If she had Down Syndrome, I knew I was going to have to handle this on my own, and I wanted to be prepared for the worst–or, as I would come to learn–the best.
I wish I could remember the specifics of when she was diagnosed, but what I do remember was that I had gotten to a really good place about it, and I felt like I could almost make her mother change her position, but somehow hearing those words, hearing it made official, sent a whole new wave of grief through me.
I remember that her mother asked me to leave the room. She told me later that she kissed her goodbye. Told her that she loved her, and because she loved her, she was better off coming home with her daddy, who knew how to take care of her better than she could. That she would never stop loving her, even though she might not always be part of her life.
Meanwhile, I phoned my boyfriend, my heart pounding. We had only been together for three months at that point, and he had spent most of those three months getting okay with the idea of the fact that there would be a baby in my life occasionally, let alone a baby with special needs in my life permanently.
And although I may not remember many of the details, I will always remember the conversation that we had, the words that he said, the way that he reassured me. I told him that the baby had been diagnosed with Down Syndrome, and that I had to take full custody of her, and that we were going home tomorrow. And I remember that there was a long stretch of silence on the other end of the phone, and then he spoke, finally. He told me he would be waiting for me when we got home, and that he loved us–that baby and I–more than anything.
It wasn’t until after her diagnosis that she became Sarah. I wanted her to have a name that was separate from the name her mother and I had chosen together. I didn’t want her mother to feel like I’d taken that from her on top of everything else. But Sarah in Hebrew means “princess”, and Sarah is my princess, the light of my life, and I knew even then that she always would be. I gave her the name Hannah after my sister, and Dorothy because it meant “gift of God”. It was perfect.
We were given a private room that night, Sarah and I. Her mother was discharged the day of her diagnosis with a prescription for antidepressants and an appointment card for a psychologist, but they gave Sarah and I one more night to get to know each other. It seemed like an impossible responsibility. My head was full of the information from the support packet the hospital gave me, information on developmental pediatricians and feeding and therapy. I barely felt equipped to take care of a normal baby, let alone one that would need lifelong therapies. I sat in that room and, for the most part, I cried. Family–both hers and mine–and friends rallied around me. By all accounts, I had unconditional love and support. But this was not how it was supposed to have gone, and even with all of these people around me, i felt completely alone.
I drove home with Sarah in the back seat going approximately 10 miles an hour and stopping every five miles to make sure she was breathing. My boyfriend was waiting at the door with a casserole from his mother. “I sanitized everything,” he told me, and immediately put the casserole down to scoop Sarah up out of the car seat. “Aren’t you a pretty girl?” he cooed. Sarah didn’t stir, but merely opened her eyes for a moment, deemed him an acceptable place to sleep, and then fell back to sleep. She spent most of her first three months just like that, sound asleep, curled in somebody or another’s arms or against their shoulder, our tiny cuddlebug. And I watched him with her, so completely, unconditionally accepting of this new little person, this completely unique and challenging little person who had wormed her way into his life in ways more profound than he had necessarily signed up for, and I somehow knew that everything would be okay.
It has been almost five months now. Sarah’s mama gave my boyfriend legal guardianship when Sarah was two months old, and one day, he will be able to adopt her. Eventually, the grief and the fear and the loneliness has subsided. She is, for better or for worse, Sarah, and I can’t change that or make her into something different. All I can do is love her for what she is–the brightest spot in my life, the most beautiful star in the galaxy, a smart, brave, strong little baby who sees her challenges and rises to meet them. Though her world might be a little different from the one we’re used to, there is no doubt in my mind that it’s a beautiful one, and I’m so glad I get to share it with her.