A Prepared Parent Is A Less Scared ParentOctober 5th, 2012 | Posted by in At Childrens | Caring | Services | Stories
“No, no…It’s not her lungs, it’s her heart!” I repeated as they placed a breathing tube into our newborn daughter Courtney’s mouth and whisked her away to the Children’s Hospital at Vanderbilt.
That’s when our family’s path was abruptly redirected into a whole new world – the scary and unknown world of a medically fragile special needs child. That was 15 years and more than 30 surgeries/invasive procedures ago. She has spent more than 340 nights in the hospital, almost 300 of them in the PICU (Pediatric Intensive Care Unit). She had her first surgery at 1 day old; the last one was in February and her next is in October. She spent the first nine years on a ventilator (the first two years was 24/7 and then she was on the vent whenever sleeping, tired, sick or just lying down) and had a trach until she was 10. Her surgeries have ranged from complicated heart surgeries and spinal fusions to more simple dental procedures.
To this day, she is followed by a specialist on every floor of the physician’s tower at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Never the less, she loves life. She enjoys bowling, boating, singing, videoing, and LOVES spending time with her big sister.
During her first heart surgery, the doctors began to suspect more than her cardiac issues and sent a sample of her blood to be tested. Sure enough, the results reflected a genetic disorder – DiGeorge Syndrome. I think I said something like “her main problem was caused by George who?” Once I finally got the name of the syndrome figured out but with the same puzzled look, I asked, “What the heck is that? Can you fix it?”
That’s how I became involved with the Junior League Family Resource Center. I wanted to learn everything I could about DiGeorge Syndrome, and a wonderful lady named Carol Kirshner gave me a lot of useful information (printed materials, website links, support groups and many other resources). Over the years, I have learned that the more prepared I am, the less scared I am. The Resource Center helps me be prepared.
As our resume of medical experiences grew, she invited me to share with future medical students through the center’s F.A.C.T. (Families As Classroom Teachers) Program, where families share their stories and answer questions in classroom setting. We also began participating in the F.A.M (Families As Mentors) Program, in which medical students, graduate students and residents visit the homes of participating families to get a real-life view of raising a child with special needs.
Courtney enjoys showing the students her room and especially showing pictures while we share her story. I enjoy meeting the students after a presentation. And who knows, one of these students that I talk with may be one of Courtney’s doctors in the future.
It has been several years since Carol retired from her work at the center, but she has passed on her responsibilities to an equally incredible and dedicated staff who have added a great family friendly environment complete with computers and the Flying Pig children’s library. Even if we don’t need anything specific, Courtney likes to stop by the center just to say hi to everybody, especially Addie and Kim.
Courtney is truly a blessing to our family. Yes, we are “frequent flyers” at Vanderbilt and managing her life has been a significant added challenge. But let’s face it, everybody has challenges – some are just more obvious than others.
I’m thankful that the Family Resource Center has helped equip us with useful information as we navigate Courtney’s health.
Has the Family Resource Center ever helped you or your family? Share your story in the comments below.