I originally posted this to my social media, but I felt like it was worthy to share here for anyone else that may like to see it:
Despite our complicated relationship, I loved John so much and my whole being aches with his loss. I, along with anyone that knew him, thought he would outlive us all even though he was born with tricuspid atresia which impacted the development of his heart. He basically had 3/4 of a normal heart, and thanks to the wonders of medicine, and John’s own brand of stubbornness, we were blessed with 33 years of his love (and sometimes frustration).
John had 3 heart surgeries by the time he was 3 years old. Doctors were able to perform the Fontan Procedure to utilize his single functional ventricle to pump for his whole body. My grandma and I lived in the Ronald McDonald House during the 2 months he was in Barnes Children’s Hospital in St Louis where my mother rarely left his side. They wanted to make sure we could see each other as much as possible. I’m so thankful for the sacrifices my family made so I could be with him then, and I’m equally grateful for the flexibility I had in the past few months to be with him when he needed to be in the hospital again, this time as his advocate.
I always thought we would grow old together… that we would have each other as sounding boards as our parents age… that we would continue to disagree on most things and support each other in the things that mattered. I’m grateful for the time I had with him and all the love and support people have provided in the wake of his death, but I’m also lonely in a unique way.
I love you, Johnboy.
