The journey of motherhood is a remarkable adventure filled with joy, challenges, and unexpected twists. For Taryn Lagonigro and Jess Quarello, two New Jersey mothers, their voyage took an extraordinary path when they received the news that their daughters would be born with Down syndrome. In that moment, they both felt isolated, as if they were the only families receiving this diagnosis. However, they soon discovered that they were not alone in this journey. According to the Centers for Disease Control and Prevention, around 6,000 babies with Down syndrome are born in the United States each year, reflecting a community that is larger and more diverse than they initially realized.
Their unique paths converged when fate brought them together, inspiring the birth of “Extra Lucky Moms.” This community aims to provide a space where special needs moms can find inspiration, feel seen and heard, and become advocates for their children. Initially introduced through a group of mothers in the Down syndrome community, Lagonigro and Quarello’s daughters, Rhea and Adeline, attended the same early intervention program in New Jersey, called Stepping Stones. This shared experience ignited a passion for advocating on a broader scale, driven by the belief that all disabilities should be celebrated, supported, and understood.
Extra Lucky Moms is not limited to Down syndrome alone. It embraces and supports a diverse range of disabilities, including autism, Jordan’s syndrome, multiple trisomies, cerebral palsy, CdLS, and many rare chromosomal deletions. This all-encompassing approach is crucial for fostering an inclusive and welcoming environment for special needs families.
The journey for these mothers is an inspiring one, marked by community, resilience, and the drive to challenge misconceptions. New parents facing a disability diagnosis often grapple with overwhelming emotions and navigate complex systems, therapies, and appointments for their children. However, it is within these communities that real change takes place. While they acknowledge that some common misconceptions persist, Lagonigro and Quarello advocate for viewing each child as a unique individual, emphasizing that their disability is only one aspect of their identity.
The impact of Extra Lucky Moms has extended beyond their wildest expectations, with an invitation to appear on the Today show. The recognition validates the importance of their mission and has opened doors to various programs, including corporate education initiatives to educate employers and employees about providing and seeking support throughout their journey.
Lagonigro and Quarello have learned not only how to care for their children but also the importance of self-care, emphasizing the significance of prioritizing one’s well-being. They encourage parents to take life one day at a time and relish the everyday moments and victories. The future is unpredictable for all children, regardless of their abilities, so staying present allows them to savor each moment.
For new mothers receiving a diagnosis, Extra Lucky Moms offers vital support, assuring them that their feelings are entirely valid. There is no one-size-fits-all approach to coping with a child’s diagnosis, and this community aims to provide encouragement, guidance, and a shoulder to lean on.
To expand their support network, Lagonigro and Quarello are publishing their first compilation book, “Dear Mama: Stories of an Extra Lucky Life.” This collection features heartfelt letters written by mothers in the disability community to new moms who have just received a diagnosis. Like a beacon of hope and encouragement, this book aims to inspire and provide insight into the challenges and triumphs of the disability community.
“Extra Lucky Moms” stands as a shining example of the strength of community, the power of advocacy, and the boundless love that mothers have for their children. It is a testament to the fact that, in this journey of motherhood, no one walks alone.