Essay as it appears on the book Gifts 2: How People With Down Syndrome Enrich the World 2009
I was sitting in the family room watching TV and stroking my pregnant belly when my husband, Andy, walked into the room. Ten minutes before, he had answered a knock at the door. When I looked up and saw his dumbfounded expression, I knew instinctively that something was wrong.
“Jennifer has Down syndrome,” he finally said.
“The doctor suspected Down syndrome and did some blood work. The test results came back positive.”
I didn’t know what to say and I certainly didn’t know what to think. Jennifer, the newborn daughter of our dear friends, Bill and Kristin, had Down syndrome. Andy and I were also expecting a girl, and Kristin and I had dreams of our daughters growing up together and being best friends.
“But . . . are they sure?” I asked Andy. “I mean, how is this possible?” Just three weeks before, he and I had stood in the small hospital room holding that precious, beautiful baby, and gazed into her sweet face. There was plenty of joy and laughter as the brand new parents showed off their daughter. We were delighted. Our friends had a baby girl!
That scene replayed in my mind as I tried to understand this unimaginable tragedy our friends were facing. Jennifer was such a beautiful baby–was it really possible that she had Down syndrome? Wouldn’t such a baby be . . . well, not beautiful?
The diagnosis had to be a mistake, it just had to be a mistake. Why was this happening to our friends, and how would they ever survive? Were they devastated? Were they scared? Were they embarrassed to tell people? Would they still show off their daughter, take her out in public? How would other people look at them and their baby?
In my helplessness, I reminded myself that there were no better parents for a child with Down syndrome than Bill and Kristin. Both of them were full of love and acceptance. I was also comforted by the fact that they had friends who would walk this road with them, two close friends who also had a daughter with Down syndrome. But there was one question that I could not get out of my head: What if my baby girl was born with Down syndrome? Oh Lord, I could never have a child with Down syndrome, please let my child be healthy.
The next time I saw Kristin, I felt uncomfortable. I didn’t know how to act around her. I asked how Jennifer was doing and what life was like with a brand new baby, and I told her how excited I was to have our baby girl born in a few months. I was not going to bring up Down syndrome. I am ashamed to say that I never once asked about my friend’s feelings. Andy, on the other hand, had multiple conversations with Bill. Bill shared that one of the most frustrating things for him was when people would say, “I’m sorry.” Bill and Kristin weren’t sorry and didn’t want others to feel sorry for them. When Andy told me this, I realized that I did feel sorry for them, and that my attitude needed to change. Jennifer would still be our daughter’s best friend, Down syndrome or not.
Our daughter Ellie was born in August, just three months after Jennifer. Often Ellie and Jennifer reached milestones like rolling, sitting, and crawling around the same time. My daughter was four months when she rolled over and Jennifer was seven months, the time when most “typical” children are sitting on their own. It never occurred to me that seeing this contrast might have been hard for Kristin. How consumed I was with my perfect baby and my perfect life!
When Jennifer was fifteen months old, Kristin took a part-time job and needed to find someone to take care of her daughter. I happily volunteered to have Jennifer come to our house. I was so excited, knowing it would be good for Ellie to have a playmate. Little did I know that Jennifer was coming to our house because I needed her.
Over the following months, Kristin and I became closer friends and she started sharing more of her thoughts and feelings about having a daughter with Down syndrome. I became better able to see things through her eyes and join in the celebration as her daughter reached milestones. We cheered when Jennifer was standing on her own, whooped when she was able to sign, and bragged about the simple words she was able to say. Most importantly, I got to see how beautiful life can be with a child who has an extra chromosome. Jennifer had Down syndrome, sure, but the diagnosis was such a small part of who she was. Jennifer was perfect, exactly how she was intended to be. And in only a few short months, I fell in love with her. That year, in our Christmas letter I wrote, “I love that little girl almost as much as if she was mine.” And I meant every word.
Shortly after the holidays, we decided to try for another baby. It did not take very long for me to get pregnant again, but for some reason it seemed to be a complicated pregnancy. During an ultrasound exam at nineteen weeks, I felt the need to ask if our baby’s heart was okay. The technician didn’t say much, other than confirming that four chambers were visible. A few minutes later, back in the examination room, my midwife said that they had found some fluid around the heart, and I needed to have a level II ultrasound. I walked out of the clinic crying that day. I felt utterly helpless as I shared the news with Andy over the phone. The next day we had to fly to Florida for a conference, and the ultrasound would have to wait a week. A week seemed like an eternity.
Our first night in Florida I woke up in the middle of the night with an unexplained and overwhelming sense that our baby was going to have Down syndrome. With a heavy heart I prayed, Not Down syndrome, Lord please! It’s okay for our friends but not for us. I locked myself in the bathroom and let the tears come. I was not like Bill and Kristin; I could never have a child with a disability. The delays, the therapies, and other people’s perceptions were too much for me to handle.
The next morning I was still very upset. “What if our baby has Down’s?” I asked Andy.
“Why do you ask that?” he replied, confused.
“I . . .” My voice broke as I struggled with my emotions. “I had a dream about it,” I finally said, as tears streamed down my face.
Andy was thoughtful for a while, then he reached out and held my hand, “If it comes to be, then we will walk down that road, and you and I know that we will not walk it alone.”
I fell into his arms and cried. He was right. Bill, Kristin, and Jennifer would walk with us every step of the way.
When we went to have the level II ultrasound, we were overjoyed to hear that the fluid around the baby’s heart was gone. The doctor said not to worry about anything, our baby girl was perfectly healthy and an amniocentesis would not be necessary. We felt relieved to know that everything was okay.
But then, two weeks later, we went to my regular prenatal checkup. “How are you guys feeling about the level II ultrasound?” my midwife asked.
“We feel great,” I responded.
She looked confused. “Didn’t they tell you?”
“All they told us is that the fluid around the heart is gone,” Andy replied.
The midwife paused, took a deep breath, and looked from Andy to me. The concern in her face threw me into panic. I feared she’d say those words that had only been spoken in the sharing of my dream. It was only a dream. It had to be only a dream.
“Your baby might have Down syndrome,” she finally said.
My heart sank. I swallowed hard and looked at Andy. It struck me that despite this news, his eyes were peaceful. The only thing I knew for sure was that this was our baby girl and we would love her, even if she had an extra chromosome. All I could muster in reply to the midwife was, “It will be okay if she does.”
As Andy and I drove home, we decided that since there was only a possibility of Down syndrome and not a definite diagnosis, we wouldn’t share this information with anyone except two people: Bill and Kristin. When we did, they helped us process our feelings and assured us that they would journey alongside us. Our close friends were becoming our family.
Nichole was born on October 2, 2007, after a smooth and quick labor and delivery. And yes, Nichole was born with Down syndrome. As soon as she was placed on my tummy, I thought, she looks like Jennifer. Several nurses told us how lucky our daughter was, for they had never seen such love and acceptance from parents who had a baby diagnosed with Down syndrome. I had fooled them all. They didn’t know that when I looked at Nichole’s face, all I saw was Down syndrome. I couldn’t see my baby.
Back at home with Nichole, I was a depressed mess. My life had been destroyed and the shattered pieces lay scattered around me. My vision blurred from the constant tears; I couldn’t even begin to put together a façade. I was in a deep and ugly hole, feeling as if warmth and light had vanished forever, and leaving me to slowly die inside. I prayed and I prayed that I would wake up from the nightmare to find out that I had a “normal” baby girl.
Exactly a week after Nichole was born, her doctor called to confirm her diagnosis: Trisomy 21. I called Andy and he came home from work early. We sat in the living room and I cried while we held each other. I thought I was ready to love a child with Down syndrome; I thought I would be able to handle it. Why was this happening to us? It had to be a mistake, it just had to be a mistake!
The doorbell rang. Andy opened the door wide and a beautiful and spunky little girl walked in, wearing one of her huge smiles. She waved both arms at us and said, “Hi!” It was Jennifer, and despite my great sadness, she had just made me smile.
Our friends stayed to visit for the evening. I couldn’t take my eyes off Jennifer that night. I couldn’t help but imagine our new life with a child with Down syndrome. And what I imagined was beautiful! I saw love, joy, and peace bundled in a baby. I saw great celebration of even the smallest of accomplishments. I imagined Nichole as a little girl running to me, offering a hug and a kiss, playing with her sister, and bringing laughter into our family. And that was only the beginning. My heart was pounding hard, fully engaged and overflowing with joyful dreams for the future. I was ready to embark on this new adventure.
By the end of the evening, I knew I could be done with my tears of sadness. As I looked into Jennifer’s eyes, I knew beyond any doubt that everything would be okay. That life with Nichole would be surprisingly rich in all aspects. That I had so much to look forward to.
Today, nineteen months later, I am even more convinced that Nichole is absolutely perfect. I would not have her any other way. Because of her, I have basked in love, joy, kindness, gentleness, peace, and goodness. Nothing about my daughter is a mistake. God does not make mistakes.