New Monthly Mama Therapy Group for Central Illinois Caregivers
A DSCC mom and her friend started the Facebook group to connect with other parents of children with special needs
Thanks to an outing at a coffee shop, hearing aids and an impromptu conversation, two moms with children of similar ages and needs connected.
“I saw her daughter’s hearing aids. My son has them, too, so I just started talking to her,” Lace Mandrell said of her first meeting with Bailey McBurney Imig.
In no time Lace and Bailey were texting, talking and sharing tips, concerns and road trips to specialists.
Their immediate connection led to a new Facebook group called “Monthly Mama Therapy.”
Monthly Mama Therapy aims to help central Illinois caregivers of children with special needs connect with and support one another.
“If you’re trying to understand a diagnosis or therapy, running from appointment to appointment or saving for the next piece of equipment, things can be challenging,” said Lace “We just thought that having a network of moms with a wide range of experiences, ready to back you up on the good days and the bad days, would be amazing.”
Lace is the mother of two sons, Ollie and Auggie. Auggie, 3, is bilaterally deaf and has had cochlear implant surgery. He also has Chiari Malformation and was diagnosed with Waardenburg Syndrome.
“He’s a wild child who rarely stops moving,” Lace said. “He’s sweet, inquisitive and a little sponge excited about learning and soaking up everything around him.”
Auggie is a participant in the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). He has been enrolled with DSCC since 2019.
Bailey McBurney Imig is also the mother of two: Paxton, 3, and Parker, 2 1/2. Parker is deaf and has undergone multiple screenings and tests. There is still no diagnosis for her other conditions.
“With all of the testing and so few answers, I feel like she’s probably that one in a million child who will have a diagnosis named after her,” Bailey said. “But, despite all her complications, Parker is a tiny, little bundle of joy who loves attention. She’s an easy-going cuddler who is almost always happy and smiling.”
During their first meeting, Lace and Bailey related to each other right away.
“We just hit it off and I’m so glad. With HIPAA (the Health Insurance Portability and Accountability Act) and concerns for privacy, it can make it hard to connect. Then COVID-19, online therapies and everything else got thrown in,” said Lace. “It’s hard to do this stuff alone. It can get really complicated and overwhelming.”
The more Bailey and Lace talked, the more they wanted other moms in the “same or similar boat” to have a safe space where their kids could connect and they could relax, share and recharge. The seed for Monthly Mama Therapy was planted.
Monthly Mama Therapy has a private Facebook page and hosts meet-ups at local parks, coffee shops and other venues in the Champaign and Bloomington areas. Conversations online and in-person may range from accessible parks and walking trails to experiences with therapies or the transition to school.
The group promotes “therapy” and the importance of caregivers taking care of their own needs, too.
“The online community is really growing. When someone asks a question, the support and responses have been great,” said Bailey. “Our ultimate goal is to build an in-person community that’s just as strong.”
Monthly Mama Therapy hopes to continue growing online and meeting in person when the weather turns cool at central Illinois locations where distancing is possible.
“Our wish list includes adding some veteran parents who are willing the help the ‘newbies’ navigate and prepare for the transitions ahead,” said Lace. “We’d also love to add activities like exercise or yoga to do together.”
For more information, visit the Monthly Mama Therapy Facebook page.
DSCC Mom Helps Create Nonprofit for NICU Families
Jessica Wolff teamed up with her therapist friend to create The Nest Postpartum to provide resources for NICU families at Carle Hospital
As the mother of twin daughters born extremely premature, Jessica Wolff is intimately familiar with the stress and heartache of having a baby in the neonatal intensive care unit (NICU).
One of her twin daughters was stillborn. The other, Lily, was born with complex medical needs and spent eight months in the NICU at Carle Hospital in Champaign.
“Often, I was the only parent there (in the NICU) and there were 20 to 30 other babies there,” Jessica recalled. “There are so many barriers that families face while in the NICU, whether it’s transportation to be able to be there for their baby every day or access to meals for the rest of the family. (NICU parents) often have to leave the NICU early to go home for their other kids and make dinner and make sure everyone is fed.”
Jessica, who is a social worker, talked about these experiences with her good friend Paige Raab, who is a pediatric physical therapist. Paige works closely with many NICU families. She also had two traumatic births herself that resulted in NICU stays.
Both women talked about the disparities they saw in the NICU and decided to do something to help. Paige proposed starting a nonprofit foundation, and The Nest Postpartum was born.
“There is definitely a hole we noticed in community services (for NICU families). Paige came to me with the idea, and we built it from the ground-up,” Jessica said.
The Nest Postpartum aims to provide services such as transportation, lodging, prepared meals, care coordinator check-ins and links to other community support programs for families staying in Carle’s NICU.
“We are hoping to provide transportation resources, whether public transportation, gas gift cards or access to rideshare programs and then we’re going to provide families with premade ready-to-cook or ready-to-eat meals. And if the (Carle Auxiliary) Guest House is unable to accommodate a family, we’ll provide hotel stays to bridge that gap,” Jessica said.
The Nest Postpartum also will provide care coordinators who are NICU moms themselves and/or have a healthcare background. These care coordinators will check in weekly with Carle NICU families to connect them with resources or provide emotional support.
Jessica and Paige started fundraising for The Nest Postpartum over the summer. The nonprofit will officially launch on Oct. 4.
“We’ve had amazing, overwhelming community support,” Jessica said. “The NICU staff themselves are super excited and the social workers we’re working with through the hospital are excited to have these resources available.”
The Nest Postpartum will initially only take referrals from Carle social workers. Jessica said interested families in need can reach out to their hospital social worker or tell their bedside nurse.
Jessica said she is thrilled to provide a valuable service to families experiencing similar struggles as her own.
Her daughter, Lily, now 3, came home relying on a ventilator to breathe. She has been enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) since she was an infant. She has received in-home nursing services through the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS).
“We really enjoyed having the support of the Home Care Program. Coordinating the medical benefits and medical supplies and nursing was really a full-time job while keeping her alive was a full-time job for me,” Jessica said. “DSCC has been really important in making sure that Lily is home and successful.”
Jessica said she hopes The Nest Postpartum will provide other NICU parents the connection and camaraderie that’s been so beneficial for her.
“Having the support and the community of other parents who have lived this has been absolutely invaluable. I found myself for eight months only being able to focus on Lily and her survival. Coming home from the NICU was equally overwhelming because of her intense medical needs. We ran an ICU out of our house for over a year until she was able to come off the vent a bit,” Jessica said.
“To find these other mothers who walked the same path has really been life-saving for us.”
To learn more about The Nest Postpartum, visit https://www.thenestpostpartum.org/.
You can also watch local media coverage about the non-profit: