"Stop using your son's prior condition as an excuse for your piss poor behavior."
A text I once received while sitting in the waiting room of Finley's cardiologist, for his one-month, open-heart surgery, check-up.
Finley, our special heart warrior.I feel so conflicted when I share about Finley and his special heart.
I feel pride in knowing how strong my boy is. How strong he was with all he has endured and will continue to endure. Pride in knowing that my boy has a story to share, and although his story may appear anti-climactic, it is a story none-the-less.
I feel proud. I am proud that our family made it to the other side of all of that. All of that being; our four-year-old son enduring open-heart surgery, in the midst of Covid, in a state we just moved to. A surgery that we had planned to schedule and endure prior to his first birthday, but by the grace of God had postponed for three years.
But also, I feel as if there is a little bit of embarrassment associated with sharing his story. Embarrassment circling around the fact that what is shared, can sometimes be looked at as the desire for clout. The desire for compassion. The desire for pity.
Don't get me wrong, what my son went through is devastating, but I will be the first the admit, that what Finley endured, at four-years-old, is not something new. And certainly not something that others haven't endured or endured in a more serious manner.
But you know what, that doesn't mean that Finley shouldn't be celebrated. That his strength shouldn't be praised and that our sweet boy shouldn't take what he went through, for all its worth, and make it prosper into so much more. A few months after Finley had underwent his open-heart surgery, following his return to school from his 6 week medical-leave, we received a flyer about the American Heart Associations, Kids Heart Challenge. If you are unfamiliar, the AHA Kids Heart Challenge is a "fun and exciting event where your student learns about their heart while helping others by raising money for the American Heart Association." Finley enjoyed watching the resources provided by 2heart.org and learned the basics of CPR, calling 911, and the signs of a stroke. Together, we acknowledged the importance of our children knowing the basic skills, that can make all the difference for those who are experiencing a medical emergency. I am so passionate about awareness and the importance of medical emergency safety, because my husband, Finley's father, has epilepsy and has been diagnosed with such since before Finley was born. In fact, while Finley was an infant, we battled with Robert's epilepsy the hardest and he unfortunately had endured 13 seizures before Finley had turned one. By age two, his father had had undergone16 seizures, and as of today, has battled 23 seizures all together, and while epilepsy/seizures and heart attacks and strokes differ substantially, the manner in which you handle the patient and the surrounding area is the same: call 911 or your local emergency number, start CPR or rescue breathing if necessary and you are trained with the proper technique, place a semiconscious or unconscious person in the recovery position until the ambulance arrives (for a seizure, roll the patient on their side), ensure the airway stays clear, and continue to contain your composure: stay cool calm and collected.
In April 2023, I received an email from the Development Director, School Engagement, through the American Heart Association. The premise of her email was that they were eager and interested in learning about Finley and his story. Her email continued that they are "inviting individuals to share their stories and experiences.... as part of our program." "By sharing personal stories, we can raise awareness, provide support, and inspire others to act." The email concluded by stating that her "goal is to really learn about the individuals who are in our area.... get the opportunity to recognize them within their schools and even at the district level!"
After talking with Finley, he was overjoyed with the opportunity to share about his resilience and bravery. While Finley may not be the first nor the only child to have undergone open-heart surgery, the Supracristal Ventricular Septal Defect that he had, accounts for only 5-7% of such defects in the United States- the rare location of the Supracristal VSD, with close proximity to the aortic valve is not only incredibly rare but was also the justification for him undergoing such surgery, which makes his story so incredibly special, and of course cool.
We were and continue to be, excited to share with his classmates, the district, and others who hear his story through the American Heart Association, that today, Finley is thriving and you would never know all that he had endured if he wasn't to show you his, proud and oh so cool scar, or if you hadn't heard his story. The pride I feel in being the parent to such a brave gentleman is never ending, and we were and continue to be enthused with the opportunity for him to share about his experience. Furthermore, my husband Robert and I, are able to share what we went through as parents navigating a child going into such a traumatic and crucial surgery, and being a sounding board for families across the board in relation to the American Heart Association and the opportunities and conversations that have arose with this opportunity, are everlasting!
During the '23-'24 school year, Finley's story was shared throughout our county, to include his school and the surrounding schools in our neighboring communities. Finley became a face for the American Heart Association, and those with special hearts, like his! This role continues today. As Finley continues to be involved in the American Heart Association, Youth Ambassador program, we have the thrilling opportunity to be apart of the 2024 First Coast Heart Walk. Finley is the Team Leader for the: Finley's Special Heart Team, where we will be walking 3 miles- we will come together, get our hearts pumping, honor survivors, raise lifesaving funds - and have fun along the way...
Interested in joining Finley and his team: Finley's Special Heart
2024 First Coast Heart Walk
Saturday, October 5, 2024 | 7:30am Festival Area Opens | 9:00am Walk Begins
Location: Jacksonville Fairgrounds - 510 Fairgrounds Place, Jacksonville, FL 32202
To join Finley's Team, or to donate, please visit: http://www2.heart.org/goto/finleyspecialheart
So, no. Maybe someone, somewhere, near or far, is sitting there reading this blog post questioning my intentions, but those who know me and know my heart, know that all I am doing, is being Finley's mom! Supporting him in all he does. Opening every door and avenue that is available for him and encouraging him each step of the way! Finley being able to share his story and his experience with heart disease encompasses more than just his open-heart surgery, but also shares the memory of his Aunt Jamie, who passed away in December 2020 from open-heart failure. And my Poppi, his great-grandfather, who passed away in November 2012 who suffered from heart-disease.
There are so many of us who are affected by heart disease and stroke, whether it be family, friends, acquaintances or more, we must all work together to change that and together, alongside Finley’s story, life's will be saved, and stories will be shared.
Thank you for your love and friendship!!
We continue to be amazed by all the wonderful people in our lives and are so humbled!!
If you are interested in registering with Finley's Special Heart Team, please visit: http://www2.heart.org/goto/finleyspecialheart
To donate to the American Heart Association, under Finley's personal link, please visit: http://www2.heart.org/goto/finleymiller
To read more about Finley and his special heart journey, I encourage you to read my blog post titled: "It's Okay Mommy, I Be Brave" Finley's Special Heart: https://blondetipsymama.wixsite.com/website/post/it-s-okay-mommy-i-be-brave-finley-s-special-heart
I look forward to sharing all about Finley and the doors that continue to open for him and his very, special heart!
XO, Kelleen
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