Patient Story from Pediatric Neurology Epilepsy Clinic

When Anthony was six months old we were referred to pediatric neurology for questionable diagnosis of cerebral palsy. One month later, Anthony began having seizures. We began seeing Shelly Flynn, ARNP, in the pediatric neurology epilepsy clinic, and Anthony was then diagnosed with infantile spasms. And so began our journey into this whole new world, new life in University of Iowa Stead Family Children’s Hospital.

Spending time at the children’s hospital for us, for Anthony, was just part of our life. We would joke about having an apartment connected to the hospital. During one inpatient stay, a woman with a book cart came by and offered for us to pick out a free book to keep. I scanned the cart and saw just the top edge of a bright red book. It was “The Story of Ferdinand” by Munro Leaf. I knew the book was a classic, but I had never read it, so I picked that one and climbed back into bed with my little boy (who was about 3 years old at the time) and began to read.

As I read the story to my Anthony, I began to think that if Anthony could be a storybook character, he would be Ferdinand. He was peaceful and strong. He wasn’t rough and tumble. He just wanted to sit peacefully under the cork trees amongst the wild flowers. This was the essence of who Anthony was. My gentle giant. Because of that book from the hospital cart, Anthony also became known to us as “Ferdinand.” It was a nickname that fit him well and stuck with him.

Anthony’s life wasn’t easy. He had many surgeries and specialists and appointments and hospital stays at UI Stead Family Children’s Hospital. He was affected profoundly by his disabilities, but every once in a while, he would flash us the most amazing smile. He would sense we were near him and reach out his hand or arm toward us. He would coo back to me when I held him and talked to him.

Ferdinand book cover

When he was 15 years old, Anthony passed away unexpectedly in his sleep in the early morning hours of December 17, 2017, in our home. “The Story of Ferdinand” was read at his funeral.

Because the children’s hospital held so much meaning to us, because of all the years of care we had there with Anthony, I made an Instagram story on my personal account, telling anyone who would watch about this book – how it came into our lives, how this bull was my son, and about his nickname, Ferdinand.

Maybe, another sleepless and fearful mama will read those same words to her precious child, and they will resonate with her, too –remind her of how strong and courageous her baby is. And then, just like at the end of the story, she will also find rest in the words, “He is very happy.”

Over the course of Anthony’s life, we spent a lot of time at UI Stead Family Children’s Hospital. Whether it was for X-rays, lab, routine visits, surgery, or inpatient stays, our care was always top-notch from tech staff to nurses to physicians. We were made comfortable there wherever we were. We were cared for, we never felt rushed or that our concerns and questions were going without being addressed. We were always confident in Anthony’s care.

The staff have compassion for their patients and patient families. They have time for you, whether it’s to allow you to vent frustrations or answer questions. You’re not a nameless face there. You are seen and known. Your child and you matter.

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