Fiona's Finale

Waiting on the Lord

“They who wait for the Lord shall renew their strength.”

-Isaiah 40:31

This week’s post was written by my older sister, Katie. Sitting smack dab in the middle of our seven-sibling line-up, I asked this proud mother of five girls to share the remarkable story of her second oldest daughter, Fiona. It’s truly an inspiring account of overcoming disability. Four of my sister’s five daughters were diagnosed with autism at a young age. The fact that they were differently-abled never stopped these undaunted ladies from chasing their dreams. Starting with the oldest, Erin, who is a talented writer, and right down the line, these girls have inspired many. Katie has been their biggest advocate, placing their needs first in her life. She currently works for UNC TEACCH, and helps other folks with autistic family members attain resources and services for their loved ones—it has become her life’s work.

Last Thursday, Fiona stepped onto the stage at East Carolina University for her senior recital. It was the culmination of a journey that in many ways has only just begun. As I watched it live on the computer, my mind flashed back to the toddler who would uncontrollably jump up and down in excitement while watching Dora the Explorer in my parents’ TV room back at 1261 Bunts. How could this polished and talented musician be that same little girl? I was struck by just how improbable her journey to that stage truly was. Here’s her story.

Fiona Catherine Anna Holler was born in Jacksonville, Florida. Her middle names honor her great-grandmothers, Catherine Fox and Anna Holler, both of whom were known to be strong in virtue and fierce in their love for their Catholic faith and family. No doubt these two women were a part of her journey—one that we could have never imagined possible just a few years into Fiona’s life.

Fiona’s early days were marked by feeding challenges that created severe colic. For the first year of her life she cried constantly. She could only tolerate a formula that could be acquired by medical prescription. I remember her dad and I carried her everywhere. She would cry if we put her down. At some point each night, I would get up to comfort her and we would fall asleep together.

As Fiona continued to grow and develop, she displayed unintelligible speech also known as jargon. She made limited eye contact and would not answer her name or acknowledge when someone spoke to her. Fiona would jump up and down in place and flap her hands. She seemed to have little awareness of safety or danger. She would attempt to elope—or wander away—in any setting.

In March 2007, a job relocated our family from Cleveland, Ohio, to Greenville, North Carolina. Fiona started in a special education PreK class with Pitt County Schools. In 2008, Fiona was formally diagnosed with autism through The University of North Carolina TEACCH Autism Program. The evaluation detailed her challenges with expressive, receptive, and pragmatic language as well as her difficulties with social/reciprocal interactions. It identified her sensory challenges and her limited emotional regulation skills. The TEACCH staff compassionately explained to us that Fiona had autism. They could not predict how she would continue to grow and develop throughout her life.

Recommendations of obtaining various therapies and intervention swirled in my head. I prayed and wondered what would become of this beautiful child. We followed all of the recommendations and received a variety of therapies over the years. Agencies like UNC TEACCH, The Autism Society of NC, UNC CIDD (Center for Intellectual & Developmental Disabilities), Carolina Therapy Connection, Venture Rehabilitations were our partners in progress. I remember there were times of slow improvement. There were times of regression—remarkably followed by significant growth. The ups and downs felt like a rollercoaster. It became clear this was God’s timeline and plan—not that understanding and accepting this made things any easier.

Fiona learned early in life to face challenges. I was impressed by how she made headway. She displayed the toughness of someone beyond her years. Fiona’s ability to speak began with jargon. She then began to echo the words and statements that she would hear, also called echolalia. Eventually, she began to speak spontaneously. She received various therapies throughout grade school, and eventually she would begin to “speak” through four strings and a bow.

In the 5th grade, Fiona developed an interest in learning to play the violin. She instantly connected with the instrument, like she had been made to play it. She had seen a commercial with the song “Back in Black” by AC/DC and began to play it as if she had heard it many times. Fiona’s orchestra teacher, Mr. Wunker, encouraged and challenged her. I credit him for nurturing her love for music. Danny has remained a great support to Fiona and her musical career.

Fiona attended John Paul II Catholic High School where she started a school pep band for sporting events. She was often requested to play the National Anthem at games. Her hard work and determination led to a music scholarship to East Carolina University for Violin Performance. She has attended various summer institutes in Maine and France. She has taught violin lessons to children and adults. She has played for weddings, funerals, church services, and even her own Confirmation.

Maybe most incredible of all is the fact that Fiona was accepted into Boston University’s pretigious music program, where she will pursue a master’s degree in music theory. Her goal is to one day become a college music professor.

Fiona had her Senior Recital last Thursday. It was moving to see the many people who came to support her. Family, friends, fellow music students, her grade school orchestra teacher, and a group of residents from the Cypress Glenn Retirement Community—where Fiona has worked while in school. Many watched on-line as well. She received a standing ovation at the end of her performance. As I watched her bow and smile I was reminded of all she had conquered in her early life. I am filled with gratitude for everyone who has been part of her journey over the years—she would never have climbed such a daunting mountain without their love and support.

The Prophet Isaiah reminds us that “they who wait for the Lord shall renew their strength.” My Fiona is living proof of this. Like her sisters, she has not let a diagnosis hold her back from pursuing her dreams. I have God to thank for that, and oddly enough, AC/DC.

*A special shoutout to my nephews, Colin and Timmy, and my niece, Francie, who along with Fiona will all be graduating from college this May. And, welcome to Sloan Jean Spear, born last Friday to my nephew, Michael, and his wife Emma. I’m excited to be a Gruncle (Great Uncle).

-Tommy O’Sionnach