Laurie Davis: Embracing the Unexpected
the story of an at-birth Down syndrome diagnosis
Life never ends up looking quite the way we imagine, and this is especially true for the postpartum stage. No matter how much we try to prepare, we will be bombarded with challenges—and joys—that we did not expect.
This was especially true for Laurie, but as she shares below, there is one thing about motherhood that we can count on absolutely: our purpose.
In the weeks leading up to the arrival of my firstborn, I would sit in the glider in the newly decorated nursery and dream. I would imagine what she would look like, think about what it would feel like to hold her in my arms instead of carrying her in my belly. I couldn’t wait to parade her around in the neighborhood, grocery store, and church.
I would joyfully envision her future. Of course she would choose to go to Kansas State, my alma mater. Maybe one day she would be a mother too. The dreams and possibilities of her life were endless as I progressed through my pregnancy with relative ease. I was so excited to take on my new role as mom!
When I went into labor nine days before my due date, I thought labor and delivery would follow the same relatively easy path as my pregnancy. I was wrong.
My labor ended abruptly via an emergency c-section when my daughter’s heart rate dropped dangerously low. I got to see my new baby for a few minutes before they whisked her away to the NICU to deal with some fluid in her lungs, which they told me was common for babies born via c-section. Suddenly, I was a new mama starting my recovery without the joy of my baby by my side.
I was supposed to be sitting in my hospital bed with my baby snuggled on my chest, but instead of full arms, my mind was full of questions. What was going on? Is there something bigger going on than a little fluid in her lungs? Why were they talking about genetic testing?
As my nurse wheeled me back to my room after a visit with my baby girl in the NICU, fear of answers I didn’t want to hear kept me quiet and kept my expectations of motherhood alive. I was content to have those few moments with my baby and pretend nothing larger was going on, even though a part of me knew something was off. There was no need to worry about something that wasn’t certain, right?
A Shocking Diagnosis
On the day we were to be discharged, we already knew we would be leaving her behind because the doctors said she needed a few more days of observation. Then the NICU doctor walked into our room. In a calm and matter of fact way, he let us know that our daughter had Down syndrome. I could not hold back the tears. In a strange way, there was relief: the tension of the unknown as we waited for the test results was released. It was a tangible diagnosis, and now we could move forward. But our path as new parents had changed, so grief and sadness quickly set in as well.
Over the next few hours, nurses, doctors, and other hospital staff stopped by, gave us resources, and congratulated us on the birth of our baby girl. They were so gracious in their response. We were told that people with Down syndrome live full lives and that we just needed to take it one day at a time. I came to learn later that this level of optimism and positivity isn’t the norm when it comes to delivering a Down syndrome diagnosis. Even with these thoughtful and kind responses, the dreams of her future felt snatched away as the words “Down syndrome” came out of the doctor’s mouth.
Then, we went home without our baby, a baby who now felt unknown.
So, I turned my attention away from the diagnosis and onto getting her home. I visited her daily, pumped to keep my desire to breastfeed alive, and tried the best I could to rest. I didn’t think, talk or research anything about Down syndrome during this time. My sole purpose was bringing her home.
My daughter came home nine days after she was born, and it was a joyous day. But underneath I knew I needed to face the reality of her diagnosis and learn how we could best love, nurture and care for her. No longer was it just navigating the around the clock feedings, diaper changes, and crazy sleep schedules of newborn life. My journey as a first-time mom had the added weight of a life-altering diagnosis.
Longing for Normal
In the following weeks, I just wanted to be a “normal” family. I didn’t know how to be a special needs mom. I didn’t want to be a special needs mom. I felt like everything that I had imagined motherhood would be had been taken away.
I didn’t want to talk about Down syndrome. I especially didn’t want to tell people she had Down syndrome. I somehow croaked out the diagnosis to my parents and my sister. My husband took on the burden of delivering this unexpected news to the remainder of our family and a few close friends. But we didn’t share broadly, and I didn’t research anything Down syndrome related for months. Speaking it out loud to others and doing research made it feel too real. The little bit that I would look up I did using an incognito browser because I didn’t want Google to learn that I had a child with Down syndrome. I had a lot of anxiety over people seeing us as “the family with a child with Down syndrome.”
As the weeks progressed, my body began to heal physically, but the emotional weight was heavy. I absolutely loved my baby girl, and when I was in the moment caring for her, everything felt right and good. But the future now seemed so foreign and unknown.
Most new moms are handed their babies, and the expectations for their future are limitless. Of course you don’t know the future, but there is nothing holding you back from dreaming. Receiving a Down syndrome diagnosis, you know from day one that your child is going to have to work harder to meet developmental milestones such as sitting, walking, and talking. My daughter might not go to college or live independently. To me those milestones of launching your child into independence is a major part of parenting, but now she might live with us forever. My motherhood goals needed to be rewritten.
There was grief and mourning, but it felt odd and out of place because my daughter was in my arms. How could I grieve for someone who was alive and healthy? I had found myself on an unexpected path and didn’t know where to go. I was tired and sad, just longing for normalcy.
Embracing the Unexpected Path
Then one day in the early months of motherhood, I was listening to a Risen Motherhood podcast, and something in my heart shifted. I was reminded that my purpose as a mother is to teach my child to know and love God. That’s it.
God reminded me that, although so much had changed about my life, and it would look different than what I expected, something very important had not changed. My purpose as a mom had not changed and never would.
Hearing and believing this truth helped me move past the things I had lost. It helped strip away the unimportant dreams that had clouded my vision of motherhood and renew my focus on what is truly important. I began to get excited because I knew that Down syndrome in no way would hold her back from knowing and loving God.
Now my baby girl is two-and-a-half years old, and I am proud that she is my daughter. She radiates love and joy wherever she goes. It is a privilege to watch the positive impact she has on people already at such a young age. Down syndrome is something I no longer fear as I envision her bright future.
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Laurie Davis is a wife and mom of two little ones. She is a full-time working mom with a passion to write about her motherhood experiences, especially raising her daughter with Down syndrome who teaches Laurie to celebrate and enjoy the scenic journey. You can read more at www.hiphipharperae.com.
