Make-A-Wish Greater Los Angeles

In exactly 8 days I’ll be running in the LA marathon. While originally I wasn’t going to share my story, my twin has convinced me otherwise.

 

While for many running and completing a marathon is a “bucket list” item, it truly was never really one for me. In fact, whenever the marathon time came around, I would purposefully drive out of LA and spend the day as far as I could to avoid the traffic. That all changed three years ago. At the time, I was a CNA working at a pediatric hospital. Together we cared for some of the world's sickest babies, kiddos, and teens suffering from a wide range of heart conditions. Whether it was a newborn baby born with a hole in their heart or a kiddo on a Berlin (essentially a machine that acts as a heart pumping blood throughout the lungs and body), or a teen on extensive drips needing a whole heart transplant, we were there to care and support them. As a care partner on the floor (basically a CNA), I had the honor and privilege to essentially be the unit “parent” for most of the kiddos, helping bathe them, feed them, change them, hold them, play with them, read with/to them, and most importantly, be there for them.

 

One of my patients had been waiting longer than a year for a new heart. He was in advanced heart failure due to a list of complicated diagnoses and spent much of that year in the hospital and hooked up to an IV that delivered lifesaving medications 24/7. He was in his later teenage years but still young enough to be treated at a pediatric hospital.

 

It was at the beginning of my shift that we got the news the necessary organs he needed to survive had become available. Intense joy filled the air as he and his family found out. In just over 4 hours, the 18-hour surgery would start that would lead to a life so dramatically different from the one he was currently living in. While the excitement lasted for quite a while, as with many about to go into surgery, he started to understandably get quite a bit anxious. While I already was taking care of 8 other kiddos that day, working with my amazing nurses, I was able to take the couple hours before his surgery to sit and talk with him. We talked about a whole range of things from his favorite subject in school to his favorite movie and tv show. He shared his funny stories hanging out with his siblings and friends and about his favorite foods. He was happy talking about everything but I could still see the fear was still there. I asked him what he was most excited to do once he got his new heart and he told me that he truly cannot wait to finally get to run a marathon. My jaw literally dropped when he said this because I couldn’t comprehend why he would say that. He then shared that his dad was an avid marathon runner and had just finished his 10th marathon and all he wanted to do was finally get to run a marathon with him. His face honestly lit up with more excitement talking about running in a marathon than it did when he found out he was getting a new heart!

 

Before we knew it, four hours had passed and his surgical team had come to wheel him to the OR. I walked with him a bit and said our “see ya laters”. I finished the rest of my 12.5 hour shift and went home feeling excited that he was so much closer to his goal of running 26.2 miles with his dad. The next morning, I woke up to a message from one of my nursing friends that his surgery didn’t go as planned. About 80% in, he developed a brain bleed and needed to be put on life support. After nearly 2 days of waiting for a sign of change, his family decided it was time to let him go in peace. I’ll be honest, I’ve lost a lot of patients in my life. From seniors reaching over 100 years of age to babies only a couple weeks old, to toddlers, I’ve been in the room with parents and siblings as they’ve said their goodbyes. It was never easy but was something I could handle, especially being the support that the families needed. Maybe because we were closer in age or maybe because we shared a lot of connections but his passing stuck with me more than most. One of the immediate reactions I had was thinking to myself about how all he wanted to do was run in a marathon with his dad.

 

While I didn’t stay in contact with his family and won’t physically be running with his dad, I am proud to be not running in his honor but rather running on his behalf.

 

As I said earlier, I wasn’t planning on sharing this story. But (in part to my brother and some recent lived experiences), I wanted to share this story for mainly 3 reasons. Firstly, I want the world to know that there are so many amazing kiddos and teens out there who are fighting for their lives every day. Most of them have a simple goal of getting to live their life and furthering that by getting to just live a life outside of the hospital. This leads me to my second reason. Life outside the healthcare/hospital system has shown me that health is taken for granted far too much. Any day you get to wake up in your own bed, breathe through your own lungs on your own, drink water and eat food through your mouth, etc. is a day you should be grateful and thankful for. I completely understand anger and frustration is a normal and good emotion to have at times, but that shouldn’t be mistaken for rudeness or obnoxiousness. Let the person trying to merge into your lane in. Smile and say hi to the person walking past you. You have no idea what others are going through and small gestures like that, no matter who you are or what your stature in life is, makes such a remarkable difference in others’ lives. My third and final reason I wanted to share this is because I want you to realize that life is not infinite. Waking up every day is a blessing and is not something that you’re owed. As many of my friends know, I often explain life as an accordion. A beautiful and magical instrument, you are in control of how many ridges (ups and downs) you experience, how long or short you get to live those ups and downs, and most importantly, how the music comes out. It can either sound like the heavenly gates above or sound like an eardrum shattering blurb. When you look back on the life you lived, make sure you lived a life you can smile about, laugh about, and be proud of.

 

Running 26.2 miles is something that I never thought I’d be doing. Training has been both amazingly wonderful and incredibly hard. This is a marathon three years in the making, and I can’t wait to finally make it a reality on March 16 during the Los Angeles Marathon. Through this amazing platform of folks I’ve met throughout the years, I’m happy to share that I’ll be raising money for the incredible Make a Wish Foundation. I know how crazy the times we are living in are right now so please feel no obligation or requirement to donate, but this is an organization near and dear to my heart and I didn’t want this opportunity to help further their impact to go unused.