I started dreaming the day I found out I was having my first baby. I couldn’t help myself. The dreams shaped into something more specific when we were handed the ultrasound picture. That black and white image provided me with information that I did not know previously. It was a glimpse at my baby girl. After that day, frilly, pink dresses made their way into the closet waiting for baby’s arrival.
As we made preparations for the big day, I enjoyed reading different pregnancy books. They offered more information about what was happening for our developing baby. I thought I had an understanding of what would happen at the birth, but the books were not written for people like me.
Days after Jaycee arrived, we were sitting in the NICU by her bedside, when I was handed a copy of her chromosome results. I studied this one-page document in wonderment as the geneticist explained the basics of Down syndrome to me. One extra chromosome would potentially mean an Intellectual Disability, low muscle tone, developmental delays, differences on her body, and risks for certain health conditions. The information scared me. It was not what I was expecting, and in those early days, the words were hard to accept.
On another exhausting day in the NICU, a cardiologist sat with me as he drew a picture of Jaycee’s heart. He explained that she had a complete AV canal heart defect, was in congestive heart failure, and would need open heart surgery in three months. As he handed me the diagram, I struggled to process this serious health condition. More fear settled in as I worried about her longevity and health.
By the time we took Jaycee home from the hospital, I had armfuls of pamphlets, books, and resources. I threw them in an empty chair and slowly went through them as I gained mental strength. Most of the things I read were not encouraging. I could not help but cry when I read about the difficulties that lay ahead for my daughter and me. If I did happen to run across an encouraging essay on Down syndrome or developmental delays, I angrily wondered if I would ever have that outlook.
My “baby” girl is now fifteen, and I have had plenty of time to process, accept, and enjoy our lives with Down syndrome. It took time to get to the place where Down syndrome was a fact of her life and not an overwhelming diagnosis.
One mistake I made early on was taking in too much information. I wanted to know what our lives would be like, and I felt books, blogs, and health websites could provide me with such insight. Often times, they did not bring me peace. In the end, I wanted reassurance that I would be okay, that our lives would be happy, and my marriage could be strong enough to endure future stressors.
I spent time in the word of God daily, as this was a routine I developed from an early age. I could find a scripture encouraging me to stay in peace and trust in God. Later that day, I would read a book that would give me fear and worry. I did not understand how to live in faith while facing unknown realities. I kept reading and searching in God’s word. Eventually, I understood I had to have faith that our future would be fine based on God’s promises.
With October being Down syndrome awareness month, I want to encourage other parents holding on to faith while raising their child with an extra chromosome. In the past 15 years, I have held all sorts of pictures, diagrams, books, reports, IEPs, and medical records in my hands. Each one individually only tells part of my daughter’s story. She’s so much more than those documents. The Bible is the source, which conveys the ultimate truth. My daughter is a person with a soul who loves God. When I read the Word, I find the peace and hope I need to raise my daughter. All the other stuff finds a way to fade into the background when I put the Bible as my primary source.
Fifteen years ago, I sought answers to so many questions. Life has provided most of my answers by now. Our family is happy, but there are days that are hard. My marriage is still strong even though we don’t always agree. My daughter has faced numerous and unpredictable health challenges, and it has not always been easy. However, we know where to go to get strength and help in tough times.
Our daughter is a gift. My husband, son, and I love her dearly. We can feel God’s love in our lives each day. When I say, “Happy Down syndrome month,” it’s not a cliché. I genuinely mean it.
Evana is a wife and mother of two children. She enjoys leading her church’s special-needs ministry. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
