Our Family of the Month – November 2013
Every month, CaringBridge likes to recognize a caregiver or family that exemplifies our mission to amplify love, hope and compassion in the world.
Heather and Michael’s second pregnancy in 2008 had been fairly normal; nothing had been flagged as worrisome as the due date arrived. Within minutes of giving birth to Lilly, however, both Michael and Heather knew something was wrong. That first hour proved to be critical. The infant was rushed to the neonatal intensive care unit (NCIU) and taken into surgery; Lilly had a severely blocked bowel that led to the removal of a part of her small intestine—a procedure that, according to doctors, she shouldn’t have survived.
A Scary Diagnosis
After evaluating the circumstances and symptoms, experts determined that Lilly had Cystic Fibrosis, a lung disease that affects the digestive system as well as other organs. Lilly spent her first nine weeks in the NICU, has endured another four surgeries. Even today, she undergoes hours of daily breathing treatments and takes several medications. Additionally, she still has regular cystic fibrosis checkups at least every three months. Her daily treatments will be a constant in her life, but luckily, so will CaringBridge.
Lilly’s journey has been inspirational to others within her community. “I had met some new families from my son’s school and a couple of them read a lot of Lilly’s past journal entries on CaringBridge,” Heather remembers. “Independently, both came up to me and told me how my positivity during this trial was encouraging to them. That meant so much to me and I hope one day Lilly can look back at my entries and people’s messages to her and be encouraged herself and see how far she’s come!”
A Full and Wonderful Life
Although Lilly lives with Cystic Fibrosis every day, it hasn’t slowed her down. Today, Lilly lives a full life—swimming with her brother at the pool, playing dress-up, going on pony rides, and just being a five-year-old. Cystic Fibrosis hasn’t stopped Lilly or her family from enjoying the world.
Lilly has a long journey ahead of her with Cystic Fibrosis but she doesn’t let it define who she is. Lilly takes on each new day with a positive attitude and a desire to live life to the fullest. Heather affectionately says, “Lilly is a fighter and takes everything in stride! Most adults couldn’t handle what she does on a daily basis but she does and has a smile and laugh that will melt your heart!”
Lilly and her family will be featured, along with others, in our upcoming year-end campaign. Check out these heartwarming stories over the next few months and see how you can help families, like Lilly’s, throughout their health journeys.
Do you or know of someone who has inspired others through their CaringBridge experience? Comment with your experiences below and share this post with someone who might need some inspiration.