Letting your child go…
Joshua Jean-Louis, first time attendee
“As a mom, it is so hard to let go of your kids, to let them run free, to watch them grow up. But imagine if you were the mom of a boy who had open heart surgery. You are so torn between letting him run after his older brother and wrapping your arms around him and never letting him go.”
For Edith Jean-Louis, discovering that her youngest son, Joshua, was born with a heart defect is something she still finds almost too traumatic to discuss. Joshua was born with Hypoplastic Right Heart Syndrome – without a right ventricle – and over the past eight years, has had four open heart surgeries. Typically, children with this defect have many restrictions placed on them, and physical activity is extremely limited.
Joshua is truly an exception. He is doing better than anyone would have expected and is an active, happy, “typical” eight year-old. Not only does he have no restrictions, his cardiologist, Dr. Lloyd Feit, has encouraged him to be active and to play with his older brother and children his own age. “We work hard as a family to get past our fears and encourage him to do anything and everything he wants to do.” Joshua is an outgoing boy who makes friends easily and joins in with every activity. “Joshua loves baseball, soccer, and basketball, but has learned to be mindful of his physical limitations. He tries to keep up with the other kids, but knows he has to take a break if he gets tired. He always joins right back in when he feels ready.”
One of the things Joshua has always wanted to do is go to camp. “I’ve been counting down the days until I turned eight and was old enough to go to Gabrielle’s Heart Camp. I finally got to go last summer!” Joshua says with a huge cheer. Edith recalls the day that she dropped him off at camp. “I remember that day so vividly. Joshua was so excited, not at all afraid, and couldn’t wait to see all of the other heart kids. It was such a big moment for our family. I was so proud to see him joining right in and making friends.”
When asked what was his favorite part of Gabrielle’s Heart Camp, without hesitation Joshua responds “Everything!” Edith was so glad that Joshua learned there are so many other heart kids out there who have similar scars as he does. “Joshua is not a shy boy, but he has always been very self conscious about taking off his shirt, about talking about his heart condition. At Heart Camp, he didn’t have to feel embarrassed about it and could actually talk about his diagnosis.” She has also noticed that Joshua is now proud that he knows the name of his diagnosis and the medications that he takes every day. “This was such a important experience for Joshua, in so many ways.”
Joshua is looking forward to attending Gabrielle’s Heart Camp again this summer, counting down the days. Until then, he is spending time playing the piano, his latest passion, and hitting the fields with his friends.