My beautiful, complicated son, Jordan, was born November 24, 2013. He arrived with Trisomy 18 and Klinfelter syndrome. He beat odds to survive a premature birth at 30 weeks and a complicated diagnosis. He blossomed into this amazing little man, with a big personality, though he struggled a lot. Besides the prematurity, he had difficulty with feeding. A G-tube was placed in Jordan’s stomach when he was about 4 months. He was growing better and improved until he was about 9 months. He had unexplained fevers and stopped growing. We tried to increase feedings but he had increased feeding intolerance. We hoped we could give his gut a break and go back to at least tube feeding, so a broviac for TPN feeding was placed when he was about 10 months. But, as with all things Jordan, our plan was dashed when a tumor was discovered. After much prayer, we decided to have the tumor removed. By Gods Will he survived the surgical removal of an 8 cm hepatoblastoma. After weening off serious pain meds, we tried to remain at home. But he continued to fight recurring infections, anemia, and neutropenia among other issues. He passed after an acute respiratory illness (we think pneumonia) on April 3, 2015.
It may seem like a tough and pointless life. But Jordan changed everything for me, for my husband, and for everyone he touched. His fight, his heart, and his grace were a daily blessing for so many people. Because of his neutropenia and immunity issues, we were not able to have many people around to meet him, so I wrote a lot on Caringbridge.org. It helped me to record our days and to share Jordan’s amazing life with more people. It also helped me stay sane. I wanted to continue to write, but I didn’t feel comfortable continuing on Caringbridge. That was where I shared his vibrance and his life. So here, will be the aftermath of losing Jordan from the Earth. Instead the light of his life will hopefully guide us as we continue our journey.