“I’m just grateful that Riley is our village”

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Being a Riley mom was not something Carlena Moses ever wished for, but she can’t imagine life without her “village” today.

Moses delivered her daughter, Kennedy, at just 24 weeks’ gestation seven years ago. Tiny Kennedy Moses, weighing 1 pound, 4 ounces, was whisked over to Riley Hospital for Children at IU Health, where she would spend the next several months of her life.

But that wouldn’t be the end of her care at Riley. Mom and daughter return every week for physical and occupational therapy for the cerebral palsy that otherwise would stiffen and weaken Kennedy’s muscles.

On one such visit last week, Moses took to Facebook to express her gratitude for her Riley family.

“Kennedy & I spend our Tuesday mornings at Riley. Today we ran into a special someone who cared for her when she was just a peanut in the NICU.❤ Riley is truly our home away from home & I love that we get to see so many wonderful healthcare professionals that have cared for Kennedy during her journey.

“As years continue to go by, Kennedy grows & members of her healthcare team change. Our Riley family grows! I have not forgotten a face or any names of the healthcare professionals that have been a part of Kennedy's plan of care! I will continue to smile & say thank you. I will continue to give God the glory & praise for not only blessing Kennedy with the most AMAZING caregivers (the Dream Team), but also providing me with support & encouragement from those same individuals! We are BLESSED!”

Moses still remembers how scared and ill-prepared she felt when her daughter was born.

“I was at Eskenazi when I had her. I knew a team from Riley was coming over to transport Kennedy to Riley, and shortly after I gave birth, someone from Riley came over to talk to me to explain what her plan of care would look like in the NICU.”

It would be the beginning of a long relationship that has seen Moses and her daughter through good times and bad.

Once Moses was released from the hospital and reunited with her daughter at Riley, she says she felt immediately included in Kennedy’s care.

“There was so much going on, but I was never left in the dark,” she said. “There was always a plan in place, and if something went differently, there was another plan in place.”

And there was something else she noticed.

“It didn’t matter if I was talking to a prenatal care doctor, a nurse practitioner or one of the nurses caring for her daily, everyone always had something encouraging to say to me.”

Kennedy would have challenges, she knew, but nothing was predetermined.

In talks with her daughter’s nurses, she learned that it was she who would help determine Kennedy’s quality of life – by advocating for her, challenging her and just loving her.

“A lot of people learn how to take care of children from other family members, Moses said. “I learned how to care for Kennedy at Riley. Everybody is very uplifting and trying to help me understand that the way I feel is also going to help Kennedy. I’m just grateful that Riley is our village.”

One of those care team members who has made a positive impact is physical therapist Capi Seeger Scheidler, Moses said. She has worked with Kennedy since she was 3, and Moses believes she has been a catalyst for a lot of Kennedy’s care.

“I feel like she is my fuel. She is a champion for me and for Kennedy,” Moses said of Seeger Scheidler. She is such a strong person and a strong part of our bond with Riley. I trust her, and I know that everything she does is custom-fit to Kennedy, and I would imagine that is the same with other patients she sees.”

Kennedy also sees Dr. Francisco Angulo Parker, a pediatric rehabilitation specialist at Riley.

“He has been phenomenal,” Moses said. “He explains things well, helping me see the bigger picture when it comes to her plan of care or the action steps I need to take.”

There will continue to be challenges, of course, but Moses appreciates the positive vibes she feels whenever she and Kennedy walk into Riley.

“As her mother, and just as her caregiver, I love that the doctors and nurses and medical staff share positive information with me and encouraging words so I’m in a healthy mental space to be her champion.”

As she said in her Facebook post, she often sees team members who cared for Kennedy in the NICU, and just like she doesn’t forget them, they don’t forget her, she said.

“When I see someone, I just try to express gratitude. It means something to know that Kennedy was not just a patient for a few months and they don’t remember who she is. She’s a person and I’m a person and they see us. That means something to me.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org