Written by, Xavier’s mom, Jackie
Xavier Thomas Ross was born on May 28th, 2011. He was perfection. Beautiful blue eyes…and such an old soul. We spent a very stressful first month at CHOP, but once we went home Xavier thrived.
Xavier never really did things the way the doctors said he would. He definitely always kept his team on their toes. He had a pretty straightforward Glen, but a few months later, his heart was not happy. His tricuspid valve was leaking and his heart was enlarged….that valve needed to be repaired. That stay was our first taste of “true hospital life”. It was complex and intense. Xavier was very sick and wasn’t getting better. He ended up needing a pacemaker. Once he had that pacemaker, he was a different kiddo! We went home and lived an amazing year and a half…and then it all changed.
Xavier went in for his Fontan. He did really great for the first 18 hours. As we were getting him ready for a walk, he coughed and then his heart stopped.
Xavier had a dehiscence. One of the stitches in his Fontan bifold ripped open. He was bleeding to death right in front of me.
It was a complete miracle that Xavier survived. I will always be grateful for that…but he was a totally different person. He suffered a major anoxic brain injury. He lost his ability to walk, talk and eat. Xavier’s life is separated into two parts. Before his stroke and after. I mourned the loss of the little boy I knew and grew to love the boy he became. We spent years in the hospital, learned a new normal and grew strong in spirit and strength. Xavier overcame the odds so many times. He did things on his own terms, including his passing. He was in complete control. Xavier passed away in my arms on Sunday August 25th. He spent the hours before he died outside, with the sun hitting his face. He was surrounded by the people he loved the best. We rocked in a rocking chair, we sang and laughed…and slowly and peaceful he drifted off into the arms of his savior. Made whole again and free from his wheelchair. Sometimes as I am falling asleep at night, I can see him running. I can hear him laughing. And although I am completely broken, I am so happy that he is at peace and waiting for me.
HeartWorks is deeply moved by our connection to Angel families and are honored to share these special lives with our community.
Jackie once said: “one of my fears is that others will forget Xavier.”
Dear Jackie and every angel family,
We will never forget. We will keep them in our hearts forever and share their stories and lives for as long as you allow us to. We will work in their memory EVERYDAY.
~The Team at HeartWorks
If you would like to share your story with HeartWorks please connect with Erin Borkowski at erin@webuildhearts.org.