Today is January 14, 2015 and am preparing for another visit to see my brother. Ten days ago, he spent his 100th day hospitalized awaiting cardiac transplant for his CHD. Interestingly, thirty years ago on this exact day, he underwent his Fontan operation in the very same hospital. I am grateful to all the family and friend support, his champion positive spirit, and the health care team for keeping him safe and in the best condition to receive a transplant when one becomes available. As a nurse, I have seen many lives pass through bed spaces from donor to recipient and understand that unfortunately in life, there is also death. I dream and wish for the power to connect my brother to a new chance at energy and new life sometime in the year 2015 and grateful to that family who decides in their time of unthinkable grief to share their loved ones organ to bring life and energy back into my brother’s body.
The 1988 film entitled “Big,” with Tom Hanks, a 12 year old Josh Baskin wished that he was big at a Zoltar machine after being told in front of a girl that he was too short to ride a carnival ride. To this day, the movie is a classic staple in our home and reminds me of the many transitions in life that we go through and the connection to past, present, and the future. When we are young, we dream of being older and when old, we are reminded of how growing up can be some of the greatest adventures of our lives. Being present moment by moment, accepting and respecting age along with circumstances, and ultimately finding happiness is a great challenge. So, how can we achieve this? Do we look to the Zoltar machine at the carnival and make a wish to find our way? Surely, that is an option some might pursue; however, the risk of this pathway often requires missing out on all the milestones along the way including detours on side streets and circles in the court. Navigating from A to B without any significant issues to an endpoint of success is ideal but not too practical.
For the actor, Tom Hanks, these moments during his 12 year old life were in effect stolen from him as he took on the role of an adult and taking on the roles required including finding food, shelter, clothing, and work. Over many weeks, the film describes how Josh becomes successful in this new adult role and even finds love along the way. Ultimately, he misses his youth and finally makes the decision to rejoin his childhood, best friend, and family.
“Big” Champions with strong hearts
This is not the case for my brother and many other patients with CHD. They cannot get their life back just by wishing on a Zoltar machine. The years of doctors visits, lab draws, procedures, surgeries, hospitalizations, and missed opportunities because of fatigue and health issues can never be returned. I consider CHD patients as “Big” Champions with strong hearts simply for all they endure. This may seem illogical given their disease processes. These infants, young children, teens, and adults are challenged with a disease given at birth and in effect give up some of their childhood milestones in order to treat the disease without knowledge of the outcome as there is no cure for CHD.
Keeping families in the present moment
In my last blog addressing the importance of music, I mentioned how my son and I were performing a concerto competition and there was a particularly squeaky piano petal during the performance. For my son, this was first competition of sort for the double bass at the Milwaukee Symphony Orchestra. He practiced with his bass teacher weekly during lessons in the past couple months perfecting his piece. His pizzicato‘s were outstanding the day of his performance, received an honorable mention for his performance, and truly proud telling all his friends and music teachers. As his mother, I am truly glowing with pride on his performance. Most importantly, I am proud that during the middle of the performance of the piece, Deep Song from 1969, we disconnected in the moment, persisted through the piece, reconnected in the following measures, and continuing successfully to the finish line.
I do not know how the journey will go from moment to moment with my brother’s health status. I am aware of his strong family and support system that helps with meals, rides, and countless other things along the way even down to providing a live Christmas tree in their home. The medical team, his family, and piano teacher were instrumental in allowing participation of my brother in the girl’s piano recital. In fact, all the students of the piano teacher performed for my brother. For this, I am grateful that with all the moments he cannot participate in being hospitalized, he is able to participate in a big milestone performance. I am aware that whatever happens, his sister will be present to support, play, and move forward with him from moment to moment in a positive manner.
Interestingly, I have taken a less active data driven role as a sister and nurse through the last few years than in my early career as a nurse and nurse practitioner. Is this because of my interest in yoga through the years or just acceptance and time? I am not sure. Regardless, he has taught me the incredible power of hope in addition to strength in mind, body, and spirit. For this I am grateful and trust that I will better understand his ability to endure these past few weeks and the challenges medically and socially spending the holiday and new year hospitalized.