I remember rubbing my protruding belly as I posed for pictures. My co-workers at the grade school where I worked threw a baby shower for my unborn daughter arriving in 3 weeks. I smiled as I marveled at all the baby gear I was not certain I knew how to use. The pink dresses made me squeal with delight, and I could not wait to see my own baby in these clothes.
As I moved the gifts from the party location to my home, I felt a twinge in my stomach. I had no idea at the time that labor was beginning. In just 12 hours, I would be holding my highly anticipated firstborn. Those first few hours with my daughter, Jaycee, were precious and surreal. I counted ten fingers and toes. My visual assessment indicated she was perfectly healthy. My husband and I marveled at our baby and posed joyfully for pictures.
The day after Jaycee’s birth, everything changed.
She transitioned to a different hospital with a NICU. The news of her heart defect, congestive heart failure, and Down syndrome rocked my world. Jaycee seemed fragile and sick. Smiling for pictures felt forced.
Information about my daughter changed everything. Before I knew Jaycee had health and developmental diagnoses, I felt at peace. After understanding everything that was wrong with her tiny body, I was fearful and upset. The information changed how I viewed her, myself, our family, and the future.
Photo by Nathan Dumlao on Unsplash
It amazes me how easily a moment of serenity can be shattered with new knowledge.
There can be beauty in not knowing everything about a situation. When life-changing information is received, it often presents me with a mental struggle. Part of me wants to remain hopeful, prayerful, and optimistic. While the other grapples with reality and wants to shut down. I have experienced this again and again with Jaycee, who is now 17 years old.
Recently, we took my daughter to her annual cardiology appointment.
Since 2011, her heart has been stable. Heart tests have been performed annually since then with little change. We expected this appointment to be the same, with no surprises.
The day before the appointment, my daughter and I sang in the car while my husband and son plugged their ears. Jaycee and I laughed at their misery. We talked about swimming together later in the week and shopping for new clothes for school. Life was normal.
Then everything shifted again. Testing this time showed significant changes within her heart. We had hard conversations with the doctor as we discussed interventions in the near future.
The day after the appointment was a struggle. My mind was spinning, trying to process everything we heard from the doctor. I did not want to laugh or sing. Instead, I wanted to cry and forget what we heard. If only I could go back to the day before, I could be blissfully ignorant of my daughter’s health issues.
I have been thinking about how to unite these two situations.
How can I acquire distressing information yet remain steady? I have been unable to arrive at this steadiness in my own ability. Clearly, I am unable to control my emotions and fears. I have read the Bible for years. It is times like these when I remember the truths I have read. God is my rock. God is an ever-present help in times of trouble. He is my refuge and strength.
It can be difficult to remember these simple truths when caught off guard. News of my daughter can be especially emotional, as I have poured my heart and soul into caring for her. Yet, God should be my ultimate pursuit. If I chase after him when things are falling apart, everything else should fall into place.
I pray that I can become so unshaken that my day after receiving upsetting news can look and feel much like my before. I pray that the words in the Bible comfort me when the words spoken about my daughter bring discomfort. I pray that you, too, find this peace when something alarming happens in your life.
Evana is a wife and mother of two children. Evana is 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.
