Many CaringBridge authors interpret the increasing visit counts on their sites as a sign that people care and are interested in the latest update. Kate and Ed Leong equate visit tallies to their family’s site as prayers for healing for their toddler. In those prayers, they find hope.
The Leong’s son, Gavin, faced challenges even before his birth on September 29, 2007. Throughout the pregnancy, he had enlarged ventricles in his brain and spent the latter months twisted out of the fetal position. When the doctors took him via Caesarian section three weeks early, he needed help breathing. He spent a month in the Neonatal Intensive Care Unit.
Less than two months after going home, Gavin returned to the hospital with the highly contagious respiratory syncytial virus (RSV), which resembles a moderate to severe cold. After two weeks of little improvement, he was taken to the Nemours/ Alfred I. duPont Hospital for Children in Wilmington, Delaware, where he spent another six weeks. Here he was also diagnosed with botulism.
Ed made the two-hour, round-trip commute to the hospital each night after work while Kate returned home to Valley Forge, Pennsylvania, only twice in eight weeks. CaringBridge helped minimize her isolation and became her lifeline to the outside world after a Nemours volunteer introduced her to the service and provided a laptop for posting updates.
The January 26, 2008 journal entry conveys her initial delight: “I can’t get over this. I decided on a whim to make this little site late last night and the outpouring of support and good wishes has been so touching.”
“CaringBridge provided us a great way to communicate with friends and family all at the same time while allowing us to spend as much time with Gavin during those difficult periods,” Ed said. “This benefit was immense and immediate.”
Gavin came home on a feeding tube and required oxygen at night. He was diagnosed with reflux, bilateral sensorineural (hearing) loss and congenital ptosis (drooping of the eye lid). Yet undiagnosed at that time was cerebral palsy. Kate knew it was coming, but when the doctor broke the news six days before his first birthday, it was devastating.
While his condition may seem challenging, Gavin doesn’t notice. The agreeable toddler receives regular physical, occupational, play, speech and hyperbaric oxygen therapy, and when he progresses past where anyone predicted, it is cause for hope and celebration.
“Gavin has cheerleaders all over the world. My celebration becomes so much bigger [sharing it with others],” Kate said. The Leongs relish every CaringBridge visitor – sometimes as many as 200 or 300 a day and spanning as far away as Egypt and Ireland to the neighbor next door.
Kate said, “Each visit means one more prayer or positive thought for Gavin.” She and Ed credit those prayers and positive thoughts as the reasons why Gavin no longer needs to wear hearing aids. A true miracle.
Providing a Voice
“CaringBridge is integrated into the fabric of our lives,” Ed said. “My wife relies on CaringBridge to be her voice to the world, her daily diary, her way of making a mark as one of Gavin’s champions, and her way of helping and connecting with other families. I am so thankful and proud of my wife for what she does for our family and also thankful that CaringBridge continues to provide her a voice.”
The Leong family tragically lost their expected daughter, Darcy, in the fifth month of pregnancy. Exhausted by grief, CaringBridge became their lifeline once again and their primary way to share their heartache and receive messages of condolence and support. “The guestbook entries have been like oxygen to me during a time when it feels hard to breathe because of the burdens on my heart,” Kate said.
Kate anticipates sharing updates on Gavin and his younger brother, Brian, forever because it’s therapeutic and connects her with other moms. It began as a means to help communicate during Gavin’s illness, and has become the boys’ baby books and a source for day-to-day conversation and support. She said, “It’s the one thing I do for myself every day without fail. I can be very selfless all day except for that one thing.”