Four-year-old Carmine may rely on a G-tube for nourishment, and he may not have mastered as many words as his peers, but Carmine is a celebration, not a condition, says his mom, Shecara Squires Reives of Brownsburg.
Like lots of preschoolers, Carmine loves to dance, sing and read. He’s picky about what he eats, too. Once you learn his story, you’ll also understand how he is a miracle baby.
Twins born at 26 weeks
Carmine and his identical twin brother, Rook, were born at just 26 weeks on June 9, 2017. Shecara thought she was having Braxton Hicks contractions, but 10 minutes after she got to the hospital for an exam, her twin sons were born. Rook survived only nine days. Carmine spent 165 days in four different neonatal intensive care units. He had several surgeries, including a tracheostomy at Riley Hospital for Children.
The first-time parents, Shecara and Thomas, were devastated, but like their son, they are fighters. While grief-stricken for the loss of one baby, they knew they had to advocate for their surviving child. They didn’t understand all the medical terms being thrown at them, but they knew one thing: They were going to do everything in their power to ensure that Carmine got what he needed not only to survive but thrive.
That’s been their mission since the first day of his life, and working with CICOA, Carmine is thriving. A nurse comes to the house four days a week to help provide care. He attends a developmental pre-school, plus has speech, occupational and physical therapy. He’s working on eating on his own and increasing his vocabulary.
Giving back with books to help other children
It’s not been an easy journey, but through it all, Shecara and Thomas have learned to adapt. They’ve also been inspired to give back.
During the height of the COVID-19 pandemic, the couple organized a book drive to support families with kids at Riley Hospital. They collected and delivered 1,500 books.
During the book drive, they realized there were no books that told unique stories like Carmine’s. So, this year, Shecara wrote Carmine’s story in memory of his twin brother, Rook. She has published two books, “I Made it. A Trach Baby Story,” and “I Made It. Welcome to the NICU.”
They also started a company called Rook’s Books Publishing LLC. A portion of the proceeds from their sales goes toward annual donations to NICUs at area hospitals. They are doing a second book drive, and this year will deliver more than 2,000 books – including the two Rook’s Books – to Riley Hospital and Peyton Manning Children’s Hospital.
“Every book is an extension of love towards our boys and family,” Shecara writes. “Rook’s Books Publishing endeavors to tell the stories of triumph seldom heard, and to motivate families and caregivers of all types. Carmine was our Trach Baby and Rook his Guardian Angel.”
Shecara has always loved writing poetry, so it seemed the perfect fit for her to write a story that Carmine could identify with the successful character in the stories. It’s also a story she wants to share with Carmine’s younger brother and sister and with other kids celebrating their own success stories.
Raising a child with special needs can be overwhelming. CICOA is there for parents and caregivers, advocating for the best care. Give today in celebration of children like Carmine.