Nomination Letter

Written by Jane F., client's mother

Julie first came to us when Frankie was six months old. She was initially told that her new client had a very poor prognosis and likely wouldn't see his first birthday. She immediately said "well, he is going to be loved and taken care of for as long as he has." Thirteen years and 75 pounds later, she is still loving and taking care of our little guy. She is his nurse, his advocate, his school para, his voice and his best friend.

Julie has attended school with Frankie since preschool. Often, she will be grocery shopping for her family and one of Frankie's classmates will run up to her, "Ms. Julie, Ms. Julie " and just hug and hug her. Without exception, every teacher in every classroom that she has been in have always told us how great it is to have her in their class. If the teacher is working with Frankie, Julie doesn't just sit back, she is helping other kids in the classroom while keeping an ear open for Frankie. I have no doubt that many of his educational successes are because Julie has worked countless hours with him.

When Frankie was four months old, we were told he "would never walk, never talk, and never the abilities beyond an infant." Frankie walks in a walker, uses over 30 ASL signs, knows his colors, shapes, understands books and stories. He is certainly not on level with his peers physically or educationally, but he most definitely has more abilities than an infant. I know a large part of that comes from Julie's influence, and for sure his love of country music comes from her!!

I have often said she missed her calling as a teacher. As a parent, my parenting style could be described as an anxious, worrier that wants everyone wrapped in bubble wrap. Thankfully, Julie is my counterbalance. She will push Frankie to his limits and that makes him stronger and smarter. She understands when I need reassurances and calm. Julie is one of, if not the top person, that I trust with my little guy. Because of Julie, Frankie gets to do some of his favorite things, like swimming. She just jumps right in there with him to make sure he is safe.

In 2014 Frankie's airway was 2mm at its most narrow due to tracheal obstruction. Frankie has NF1 and one of his tumors had begun to take over his airway. By the end of 2014, his airway was so unstable the doctors recommended we not leave the hospital. After a lot of discussion, we were told the doctors at Cincinnati Children's Hospital would take him on as a patient to try to repair the airway and enroll him in a clinical trial for a new drug to shrink his tumors. For over 3 years, we drove 12 hours each way every 28 days to get this life saving medication. Julie did not even hesitate a moment before volunteering to ride with me to these appointments. Some were just a weekend, some were two weeks long. She left her family in Kansas to help Frankie get the best care possible. She even missed the birth of one of her grandchildren due to being on the road with me. Travel with a medically fragile child can be quite challenging and a lot of work. You are lifting and moving not only a kiddo but wheelchair, equipment, luggage, etc. But somehow, we always seem to have fun on our trips, and Julie is always game for whatever adventure we had in mind; zoo, aquarium, shopping – she was always there to assist and have fun with us. 

When Frankie was in the 4th grade, Julie tearfully approached us, explaining that he was getting too heavy for her to feel like she could always be safe with him. She was facing some healthcare challenges herself and had been offered an administrative position. We understood and accepted her decision. We were very fortunate to immediately find a fantastic nurse to accompany Frankie to school. Julie of course, didn't just leave, I would often catch her at school checking on him, she would offer to watch him at home, and she would pop over with dinner every once in a while.

When COVID-19 started we, like many others, lost our home health nurse and Frankie's school went to online only. When it was time for Frankie to go back to in person learning, we had switched him to a new school where no one knew him. We struggled to find a nurse to go with him and he wasn't allowed to attend without a nurse. I was sitting in my living room one day when Julie called and said, "Do you still need a nurse?" She wasn't going to let him go without her any longer and she returned to us. It was such a blessing and an answer to many prayers.

Being a home health nurse brings so many more challenges than any other type of nursing. Unlike nursing homes or hospital settings, a home health nurse has to have the confidence and skills to medically take care of everything! If there is an emergency, we don't have time to wait for an ambulance, we have to be prepared to do what needs to be done to keep our kids safe. Julie understood that but was also able to not only be about healthcare. She plays, sings, often I will come home and she had done my dishes. She lets our dog out to potty. She helps decorate for birthday parties. In other words, she is not only the one we rely on for quality care, but we've come to rely on her as an important part of the family.

She has helped me build countless Halloween costumes for Frankie's wheelchair. She has dressed up every Halloween with him! When we built a pirate ship around his wheelchair, he was the pirate she was the first mate. Harry Potter and Professor Mcgonagall, PacMan and a ghost, a train conductor and his assistant. Julie has taped, glued, painted and drawn all of it. She’s been a good sport about us dressing her up to go along with him.

She has made Frankie's life fuller, more fun, and safer for twelve and a half years. She is almost always the first person he asks for in the morning. He opens his eyes and immediately starts signing "Nurse Julie" and we are happy to say, "Yes buddy, Nurse Julie will be here in a little bit."