CJ's Fund Story
After a pregnancy filled with questions and wonder Craig Chilsen Moody, Jr (CJ) was born on November 30, 2008.
Throughout our pregnancy some of the best doctors in the world tried to help us prepare for the challenges that lay ahead, but no one expected the incomparable strength and spirit that was within our child. In fact, it was CJ who led our family every single day of his extraordinary journey.
CJ was born with many congenital abnormalities, but a primary diagnosis of craniosynostosis. His unusual physical traits, slow growth pattern and random ailments defied medicine and we were offered a variety treatment options and medical opinions. The fact that he had no known syndrome frustrated every medical professional we visited, but for us it made sense. CJ was beyond definition.
After three grueling months in the NICU at Massachusetts General Hospital we were discharged home. CJ finally weighed five pounds (which was a huge milestone) and had recovered from his first surgery. During his time in the NICU he fought hard to gain just one pound in three months time, while enduring some of the most invasive and uncomfortable testing imaginable. We were ready to have him surrounded by the comforts of home.
Although we knew Early Intervention (EI) could offer helpful therapies in an in-home setting, we were skeptical of more strangers wanting to “figure CJ out”. In the end, the potential developmental advances outweighed our hesitations and we joined the Criterion Early Intervention family in early March 2009.
From the first visit it was clear that these women got IT. They respected our home, our roles, our fears and our hopes. They clearly communicated who they were, and what they set out to do. Our providers, June and Gina, were not trying to label CJ, or compare him to other children, they were trying to get to know him for who he was. They were unfazed by CJ’s unique story and physicality, and always saw his potential. Through their therapies and guidance they respected, challenged, loved and nurtured our CJ. Our visits with June and Gina, and later Kathy, our feeding specialist, inarguably assisted in CJ’s development including, his increased confidence, socialization skills, physical advances, and overall comfort level.
Due to a major neurosurgery, countless doctors appointments, and a strict tube-feeding schedule, CJ had limited time to be a “normal” baby. His regime often kept us home, or in hospitals making it difficult for him to bond with our large supportive family, but EI helped change that and for that we will forever be grateful.
Our months working with EI helped make the Summer and Fall of 2009 some of the best times of our lives. CJ participated in our annual summer vacation, received the sacrament of Baptism, attended Halloween festivities, joined his large family at Thanksgiving dinner, took two roads trips to visit family in Maine and NJ, and had a 1st birthday party. Our family and friends have said to us repeatedly that the quality interactions they had with CJ during these special occasions have shaped their hearts and minds for a lifetime.
On Dec. 21, 2009 our hero succumbed to a fast moving bacterial infection that overwhelmed his little body. Our hearts ache daily as life moves on without CJ, but our hearts also swell with pride when we think of the impact our little boy had on the world. To this day it remains difficult to define CJ. In 13 months he exceeded every expectation we have set for all of our sons; he gave everything he had to reach his potential, he loved and laughed with his family (especially his brother, Bo), he smiled at strangers, he demonstrated patience and resolve, and he displayed a silly side. But above all else, CJ brought out the VERY best in those around him. What more could we have asked for? CJ made us believe.
We will be forever grateful for the love, empathy, information and professionalism shown to our family by June, Gina and Kathy. We know these qualities exist in EI programs across the state. As long as EI keeps seeing the potential in these most special babies, we will continue to strongly support their mission in the name of CJ’s Fund.