I am a contributor to a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Gifts is a candid and poignant collection of personal stories from 63 mothers who describe the gifts of respect, strength, delight, perspective and love, which their child with Down syndrome has brought into their lives. This book is available now at Barnes and Noble, or can be purchased online here.
Here is my story (this was written when Payton was seven months old) ...
Ups and Downs
by Bethany Balsis
HOURS AFTER PAYTON was born, four doctors walked into my hospital room, one after another, with somber looks on their faces. I already knew in my heart that our baby girl had Down syndrome. Deep down, I was still hoping that I was wrong, but they confirmed my worst fears. Then they quietly filed out of the room. As soon as the heavy, metal door closed behind them, my husband and I looked at each other and began sobbing. Then the questions began.
What are we going to do with a child with Down syndrome?
What kind of life capacity is she going to have?
What are we going to do financially?
Will she be able to go to daycare so that we can both continue to work?
We continued talking and crying and worrying, with all of our questions boiling down to one: What will life be like for our daughter, and for us?
That was the beginning of the roller coaster of emotions that we experienced over the next several weeks. It seemed that our new reality was a ride of happiness and sadness, hope and fear—a ride that we could not control.
About an hour after we met with the doctors, some of our family came to visit. Through tears, we told them of the doctors’ suspicions. “I’m sorry,” they said. Even though we were devastated, we did not want people feeling sorry for us. At the same time, it felt weird for people to say, “Congratulations!” I thought to myself, Congratulations for what? Congratulations for having a baby that is in the NICU? Congratulations for having a baby that has Down syndrome? Nobody asks for their child to be born with Down syndrome, so why would anyone congratulate me for that?
While I knew that they were simply congratulating us on the birth of our beautiful little girl, it was hard for me to swallow their comments. I felt as though they were tiptoeing around her diagnosis, which obviously had thrown everyone for a loop. I understood that these sorts of situations were hard and had I been in their shoes, I probably would not have known what to say myself. Still, nothing seemed to make me happy. And at the same time, I was ashamed at my feelings of sorrow. Why was I drowning myself in tears over her diagnosis, when Payton was in the NICU, hooked up to what seemed like hundreds of wires and monitors, fighting for life?
Later that evening, while my sister was visiting, we were doing some research online on our laptop computer. My husband ended up on the Special Olympics website. “Payton is going to be the best bocce ball player in the Special Olympics!” he announced. I said, “No, she is going to be the prettiest cheerleader in the Special Olympics!”
In hindsight, I realize that was our way of coping. We had quickly become determined to make Payton’s life the best it could be. My sister later told me that our attitudes surrounding the situation helped her to cope. She said that as long as we were okay with everything, she was too. This made us realize that people were going to follow our lead regarding Payton’s diagnosis. If our attitude was positive, others would be more likely to feel the same way, and that would make the world a better place for our daughter.
In the days that followed, I would sit and stare at my beautiful baby girl while she slept so peacefully in her isolette. Despite my hope for her future, a million worries continued to run through my head. How would other people react to her? Would she be stared at or teased? Would she have friends? My fears continued to churn in my stomach. I knew she would be okay as long as I was there to defend her, but I also knew that she would eventually have to blossom into her own being, and that scared me.
Prior to my discharge from the hospital, an unfamiliar nurse knocked on my door. She came into my room and sat next to me. There were tears rolling down her cheeks, but she had a sense of peace about her. “I’ve been in your shoes,” she said. I looked at her intently, anxious to hear what she was going to say next. She said that years ago, her oldest son spent some time in the NICU at birth, due to a severe heart defect. Finally, I thought to myself, someone that truly understands the emptiness that we felt at not being able to have our baby by our bedside to bond with.
Smiling through her tears, the nurse went on to tell us about her friend’s daughter who has Down syndrome. This girl was in love with life, she said. This girl had sleepovers with her friends, and they would run around giggling about boys. Imagining this future for our daughter brought us incredible relief. We were starting to realize that our life, and hers, could be a good one.
We spent the next several days traveling back and forth to the NICU, continuing to try to swallow what had just landed on our plate. At one point I came upon a former neighbor who knew I had been pregnant. After noticing that I was no longer pregnant, she naturally starting asking about the baby—the typical questions, like “When was she born?” and “What did you name her?” At first I didn’t mention that Payton had Down syndrome, but then I felt like I was cheating her with the answers I gave. So, in a sad sort of voice, I said, “She also has Down syndrome.” Her response was one of obvious disappointment.
After we ended our conversation, I was angry with myself. Hadn’t I already figured out that people were going to take my lead? I didn’t feel disappointed anymore about the diagnosis, so why was I pretending to be? After that encounter, I never felt obliged to tell another soul that Payton had Down syndrome. If they already knew, then that was fine. But if they did not know, then that was fine too!
A couple weeks after we were able to bring Payton home from the hospital, some of our other family members came to visit. I was sitting at the kitchen table assembling the birth announcements that I had so proudly made, when someone said to me, “You know, your lives are never going to be the same.” The tone of the statement was clearly negative. I was dumbfounded. I didn’t know what to say. Had I been living in a dream world, thinking our lives wouldn’t be different? I was confused, so I just nodded in agreement. Hours later, I was once again angry with myself for not defending our family. And just as before, I had feelings of confidence that Payton’s life was worth living, and so was ours.
My confidence grew in the days that followed. At one point, I was talking to some other parents of children with Down syndrome about my worries for the future. Those parents told me, “Kids will be kids. They get teased for wearing glasses or for what they wear or for the things that they say. A typical child has just as high a chance of being teased as Payton does. You just never know. Try not to focus on the future.” I had never thought about it that way. I felt a solid sense of peace—for a while, at least.
Payton is now seven months old. In some ways we are still on that roller coaster, although the ride does not feel as wild now. These days, we are trying to focus on doing everything we can to help Payton maximize her potential. Sometimes, the therapies and exercises and techniques can be overwhelming. Whenever I start to feel sad or scared, I find it refreshing to see my son, Mason, interact with his sister. At two years old, he is oblivious to the fact that Payton has Down syndrome. He adores her just for being herself. As he runs through the house day after day, he constantly makes quick pitstops to give Payton a kiss on the forehead and adoringly say, “Look at baby sister. Isn’t she so cute?” His love is unconditional, as is mine and my husband’s. And that love will ensure that we have more ups than we do downs.
Here is the Gifts montage ... check out that third baby!