Embracing the Unexpected: Nika Pride’s Journey with Nova

Introduction

For many parents, the diagnosis of trisomy 18 can be a life-altering moment, filled with uncertainty and fear. For Nika Pride, the unexpected news came after the birth of her daughter, Nova. In this candid narrative, Nika shares her experiences, from the initial shock to the profound lessons she’s learned along the way.

The Diagnosis

The news of Nova’s trisomy 18 diagnosis came as a devastating shock to Nika. “Hopeless. Even in a trisomy ‘friendly’ hospital, the news was delivered with a sense of inevitability,” she recounts. The feeling of despair was overwhelming, and Nika found herself grappling with a reality she had not prepared for.

“So many wanting to “spare you” the pain & disappointment, they cannot see past not-so-happy stories to see your child as unique. And it’s very lonely in those walls with the “experts” and the pity in their eyes, & the low voices & fidgety feet ready to bolt as soon as you’ve asked the questions even they can’t answer.”

The Birth Experience

Unlike many parents who receive a prenatal diagnosis, Nika only learned about Nova’s condition after she was born. “We did not know about Nova’s diagnosis until she arrived,” Nika recalls. “We delivered at home; a completely uncomplicated vaginal delivery at 39w3d, & spent her first 4 days of life at home. It was magic. No hospital beeps & boops. No wires & probes. And not a clue what was ahead of us.” The day that was meant to be filled with the joy of welcoming a new life became a whirlwind of medical discussions and unforeseen complications.

The Evolution of Perspective

Initially, the journey felt bleak and disheartening. “It was most grim and, quite honestly, deflating at first,” Nika admits. However, over time, she began to shift her perspective, finding small glimmers of hope and moments of connection with Nova that brought unexpected joy amidst the difficulties.

“Surging with post-delivery hormones and just in the fog of it all. We’ve found support in the most unexpected places & in the smallest gestures. Mostly these days our family flame of hope does burn brightly. Having access to other families around the world in online communities like SOFT; & being able to cheer for each other’s children has taken some hopelessness away. I can read the stories & see the faces & feel how we’re all connected.”

The Support System

Nika’s support system became a lifeline during the most challenging moments. “We’ve had hospital staff come by individually to check on us, not just as patients but as people,” she notes. “I remember staff being in awe of how I spoke to Nova and read books to her in the hospital, even though, due to her diagnosis she was likely deaf. As life would have it, she can hear, & it did so much for my Mom-tuition that those 15months before our hearing screen [confirmation] I’d never passed up an opportunity to say “I love you” out loud to our baby.” The compassion and care of these individuals became a source of comfort, reminding her that she was not alone in her journey.

Words of Wisdom

To parents facing a similar diagnosis, Nika offers a deeply personal piece of advice: “Our stories are connected, but your child is unique. Take each day as it comes, and cherish the moments you have.” She says. “Think less of what they can not & will never do so that you can actually “see” them. This life is a beautiful life. They were entrusted to you because you can do this! “Experts” are not destiny-predictors– try not to give that power away to them.” Her words resonate with the hard-won wisdom of someone who has walked a path few can truly understand.

Conclusion

Nika Pride’s story is one of resilience, adaptation, and the unwavering love of a mother for her child. In sharing her experiences with Nova, she hopes to shed light on the complexities of trisomy 18, offering a sense of solidarity and hope to other parents navigating similar journeys.