Luciana’s Light: A Journey of Love and Advocacy

By Alexis Pechek, Unit Secretary, NICU

Luciana Marie entered the world in February 2021, right after an ice storm blanketed Fort Worth. Her birth brought with it an “at birth diagnosis”- we had no prior knowledge of her heart defect or any markers suggesting Down syndrome during pregnancy. Our first glimpse of Luciana filled us with awe, but also a sense that something was different. Babies are often swollen after birth, so we initially dismissed it as that. However, the next morning, we received her diagnosis of Down syndrome and a heart defect, which left us overwhelmed. We struggled to process this unexpected news and question whether we had somehow failed her during the pregnancy. I, as her mother, felt like I had let her down when I was to protect her.

We mourned the child we envisioned and embraced, with open hearts, the child we didn’t know we needed.  Grieving was a necessary part of our journey, and we realized there was no right or wrong way to navigate it. But in the midst of our grief, we began to transform into parents we never thought we could be, thanks to Luciana. Everything we had heard about Down syndrome had been colored with negativity, and we couldn’t help but fear what the future held. But we resolved to turn things around because Luciana, like all individuals with Down syndrome, is inherently worthy.

Luciana's resilience, patience and kindness

Luciana has left an indelible mark on our lives. She has taught us resilience, patience, kindness, and above all, how to be fighters, just like her. We aspire to create a world where individuals with Down syndrome are treated equally and inclusively, where access to care, resources and support come at ease and acceptance is the norm. Luciana ignited a passion in us to advocate for her and show the world her beauty. After all, isn’t that what every parent wants for their child?

As Luciana grows, we wonder about her limitless potential. There are many misconceptions about individuals with Down syndrome, but there are also countless examples of them achieving greatness, whether as athletes, models, actors, public speakers, or students pursuing higher education in college. If we limit their opportunities, how will we ever discover what they are truly capable of or witness them thrive in life?

Raising a child with a disability is undeniably challenging, but it’s also profoundly rewarding. There’s no rulebook for parenting, especially when your child has a disability. We’ve learned to navigate this journey with the help of families who’ve walked this path before us and supportive organizations here in the Dallas-Fort Worth area, such as Down Syndrome Guild of Dallas, Down Syndrome Partnership of North Texas (DSPNT), and Hope Story. Cook Children’s Medical Center has also played a crucial role in Luciana’s care.

To the parents who’ve just received a new diagnosis, we understand the fear, confusion, and uncertainty that can engulf you. I ask you to take it one day at a time and cherish your baby first, the diagnosis second. Don’t miss out on the joy of these precious early moments. Reach out to local Down syndrome organizations, seek support from friends and family, and connect with those who have traveled this journey before you. Support that has your back, guides you to resources, and advocates for individuals with Down syndrome can make all the difference.

What health care workers should know

Health care workers can also be crucial allies for individuals with Down syndrome and their families. They can advocate when needed, ensure proper care, and prevent anyone from slipping through the cracks. Volunteering or donating to local Down syndrome organizations is a tangible way to contribute and recognize their worth.

In addition, using person-first language is essential. It’s “Child with Down syndrome” or “Individual with Down syndrome”, not “Down syndrome Child” or “Downs Baby”. A disability is something they have, not who they are. We’ve also personally learned to eliminate the use of the dreaded r-word from our vocabulary. This word, even when not used negatively, is offensive and hurtful, implying that people with Down syndrome are less competent. The words we choose to describe people shape how we treat them, and changing out language can signal a shift towards greater inclusivity.

Luciana, whose name means “light” and “glowing soul”, truly lives up to her name. We chose this name before we even knew about her diagnosis, something tugging at us that she would need a strong and special name. Love radiates from every inch of her, and if you ever have the privilege of her embrace, you’ll carry it with you, forever. Luciana has been a fighter since day one, and nothing will deter us from advocating for her every single day. While this journey wasn’t what we expected, we know for a fact, it was undoubtedly what we needed in our lives.