Earlier this year, we received an unusual, but lovely request from one of our peer mentors. Michele Randolph wrote to tell us that she was graduating from UNC Charlotte in May, with dual degrees in History and Africana Studies, and she wanted to honor her NICU journey and her volunteer work as a Hand to Hold peer mentor by wearing a sash with our name and logo, along with her graduation gown. Here’s her story.
As a deaf/hard-of-hearing NICU mom, Michele found it incredibly difficult to communicate with her NICU care team and find the support she needed. Her daughter, born at just 25 weeks and weighing one pound, eight ounces, had multiple health concerns and was in a hospital an hour away from Michele’s home. Michele relied on her mom to not only drive her to the hospital and back, but she also relied on her to be the main contact person if NICU staff needed information or had to relay information about her baby. Needless to say, Michele felt helpless.
Although the hospital had a support group for NICU families, the groups were not entirely accessible to Michele, who does not use sign language. At the time she relied mostly on lip-reading (Michele has since received a cochlear implant and has gone from 2% spoken word recognition to about 90% spoken word recognition). The support group leaders made every effort to ensure that Michele understood what was being said and requested that other attendees try to remember to keep their hands from their mouth and look in her direction whenever possible when speaking. Still, Michele felt her deafness impacted her access to support.
“I vowed that if I ever got through this journey, I would advocate for moms like myself who had a disability while also going through the trauma of having a very tiny baby in critical condition,” said Michele. “Those NICU weeks go by slowly.”
Michele came across Hand to Hold when she started researching ways she could help and connect with other moms that had children born prematurely. “I saw the Hand to Hold website and instantly knew I found what I have been searching so long for. A community of moms like me with children and experiences similar to mine.” Michele inquired about becoming a peer mentor, and for the past five years, she has treasured her role in guiding NICU parents through their journeys.
“I love all my babies and their parents. I share my disability and tell them the different ways I made it work, and that they can too. It matters when you see a parent with a NICU journey that also may be dealing with their own limitations. I had no one to mentor me that had a disability, so my support outside of my family was limited.”
Michele received a cochlear implant at UNC Chapel Hill in 2018 and describes the process as life-changing, allowing her to volunteer and advocate more for herself and her special needs daughter that was born prematurely. It has also improved her relationship with her older adult daughter, age 25, giving her the ability to call and talk on the phone – an activity Michele cherishes and that has brought them closer.
On May 14th, Michele walked across the stage at UNC Charlotte to receive her degree, wearing a Hand to Hold sash to commemorate how much being a peer mentor has meant to her. “Hand to Hold has been a part of my family,” she said. “My graduation uniform to me would not be complete without something representative of my passion and advocacy for preemie babies and the NICU experience that forever changed my life. Hand to Hold gave me my first real sense of community and a connection to a network of support. I feel that if I walk across that stage with anything from Hand to Hold, every child, parent, staff, and supporter are walking with me, because I was truly lost before finding Hand to Hold.”
Her ultimate goal is to continue her education and get her doctorate in the Social Work field. We hope to be there, at least in spirit, when she does.