By Jeff Mottice
The Medical Journey
My daughter, Taylorann, was born with a number of congenital birth defects and diagnosed with a multitude of other VACTERL Association conditions. As naïve first-time parents, her mom Tracy and I could never have imagined the complex journey our little girl was to begin from the moment hospital staff whisked her away shortly after discovering some of the visible birth defects.
It was a prolonged labor but nothing that caused any suspicion by the doctors and nurses that she would arrive into this world with a complex medical condition. Shortly after her birth, once the umbilical cord was cut and she rested on Tracy’s chest, the post-birth prenatal team began their examination.
I still vividly remembers the faces of the prenatal team as they discovered “something” during the exam. They then noticed the cold stare of a father who sensed that “something” was not right, and immediately motioned me over from the side of the delivery bed to explain what they had discovered…and what wasn’t discovered.
The team tried to minimize the issue and explained to me that surgery would be required. A pediatric surgeon was called in to provide further examination and details of what was to follow. Still under the influence of medication and an epidural, Tracy had no idea what was going on only a few feet away from her bed and was only told after Taylorann was taken from the room.
A week after she was born, Taylorann left the PICU and as new parents, we left with additional fears of unanswered questions about her medical condition along with a long list of scheduled doctor appointments and medical tests.
This was the beginning of a journey with parallel pathways; the path of the intense, complex and medically focused life of Taylorann, alongside a long road of little to no understanding from an outside world.
With little guidance and limited information available on her condition, additional congenital defects revealed themselves with each medical exam and surgery. Tracy and I did our own research and pushed hard for answers. We remained vigilant and quickly realized we needed to be our daughter’s advocates. This meant, at times, being bolder with communication to her doctors than we would normally be. Yet in doing so, we grew to love her surgeons, nurses, and care-givers and developed a great relationship with them. What they may have lacked in knowledge about her specific condition, the majority of them made up for it in their care, compassion and continued fight for our daughter.
Her doctors kept her alive, performing surgeries that – years later – were validated by specialists at Nationwide Children’s Hospital as having been done properly. That is not always the case for many kids having surgeries performed at their local hospitals.
The Columbus Ronald McDonald House Becomes a Home Away From Home
As Taylorann grew from a baby, to a toddler, to a little girl, and then to a teenager, and now as a young adult, her medical journey took her to physicians and specialists at multiple hospitals across Ohio. Having landed the majority of her overall care at Nationwide Children’s Hospital in late 2014, Taylorann now has a collaborative team of specialists that continue to manage and maintain her overall medical care.
Living outside of Cleveland, the multiple surgeries, procedures, illnesses and hospital stays at Nationwide Children’s, resulted in a personal introduction to the incredible people and charity of the Ronald McDonald House Charities of Central Ohio. It wasn’t as if we weren’t familiar with Ronald McDonald House Charities, but it was the first time we had to be on the receiving end of its care and mission.
Receiving was difficult at first, especially for me. However, with the long days and nights across the street at the hospital, I quickly came to the realization that pride was preventing me from truly receiving the blessing of care that the Ronald McDonald House offered for my family as well as myself.
Over the last six plus years since their our stay, we simply cannot express the gratitude and love we have towards – not just the charity itself – but an affinity to the staff and volunteers as well. In the midst of stress from Taylorann’s hospital stays at Nationwide Children’s over those years, the Ronald McDonald House has become a cornerstone of support, a place of rest, a comfort from hunger, and a pillar of love. That allows Tracy & I the ability to provide the best possible support for Taylorann while she is hospitalized.
Early on, and long before Covid-19, Taylorann’s sisters would stay at the House on weekends while visiting from Cleveland. Her youngest sister Karissa, in the first few years of stay, would spend hours in the Princess Room while her middle sister, Kendall, loved the Blue Jackets Clubhouse stairwell. For those stays during warmer months, both would enjoy the outside play area, especially the water sprinklers. Tracy and I, when not at the hospital, would spend time in the Buckeye Family Room on the third floor catching up on emails, voicemails and other outside responsibilities. Kendall, now a nursing student in college, fondly recalled those Clubhouse play days just last month when she once again came to stay with her sister over a long weekend at the hospital.
Taylorann, having been hospitalized four times in the last eight months during the pandemic certainly has made our stays at the Ronald McDonald House look a little different. Regardless of the changes needed to be made for everyone’s safety, the family will forever be thankful to the staff and volunteers. Covid-19 didn’t stop the need for help, it magnified it. And thus, it became clear that there were indeed personal sacrifices made by the staff in order to provide the services offered to families. The added stress and responsibilities never diminished the care, concern and support provided prior to the pandemic.
The Ronald McDonald House Leaves an Impression on The Whole Family
The Ronald McDonald House has become an integral part of our family; not just in receiving but also in our continued giving. I fuel my coffee addiction by mainly going to McDonald’s leaving change in the drop box or rounding-up the total, collecting aluminum can tabs, educating family and friends about Ronald McDonald Charities, and donating resources.
And like the Mission of Ronald McDonald Charities, Taylorann desires to help and use her life experiences and her medical history to become an advocate for kids with long-term medical conditions. Although her college education started two years later than most her age, and has been interrupted with the most recent hospital stay, the resilience ingrained from years of challenge will undoubtedly serve her well to accomplish and fulfill that desire.
Until then, she continues her battle and longs to persevere. Even in illness, she encourages, motivates and inspires, not just younger kids with similar conditions, but also adults who have had long-term medical procedures. As for her family, it is of great comfort to know that as her journey continues, the Ronald McDonald House of Central Ohio is steadfast in its mission to provide the home away from home when needed.