This letter was written for Addie’s kindergarten teacher in response to the announcement that February 5th is the 100th day of school. The kids were sent home with a cape to decorate with 100 items to commemorate the 100th day. For us, it’s also Wear Red day for CHD awareness.
Hi Mrs. Palladino,February 5th is a very special day for us, as it marks the beginning of congenital heart disease awareness week. Children with CHDs don’t get very much recognition as a whole, but in our family, it always makes its presence known through blue lips, unpredictable vomiting for no apparent reason, and laying down in the middle of playing.
Addie knows her sister’s heart doesn’t have the right number of chambers, and she also knows that hospital stays are just around the corner even when we don’t expect them. She has asked me if we can just go get a new heart for her numerous times. It’s tough to explain to her that it isn’t that easy, and that even with that gift, we will always be looking over our shoulder.
Addie has been profoundly affected by her sister’s illness. She tells me when she thinks Izzie is too blue or that maybe she needs to catch her breath. She worries about her more than she lets on. It’s not fair for a 5 year old to have to worry about their sister the way she does, but it’s our life. She has become used to it like the rest of us.
I’m telling you this because February 5th is Wear Red day. We wear red for Izzie to support awareness about her disease. We wear red for our friends whose children are still suffering. We wear red because like pediatric cancer, there is no cure for CHDs- not even surgery. Izzie will always have issues that will need to be dealt with. We have been so blessed so far and I love watching her run around the front of NMES like all the other kids.
CHDs are silent. They sometimes don’t rear their ugly heads until a child collapses in a soccer field or a pediatrician hears a murmur during a check up. One in 100 children are born with a form of CHD. So on the 100th day of school, February 5th, we will be in red with our special cape honoring Izzie and all her friends.
It’s a significant moment for us, and for Addie. She has struggled with all the attention given to her sister, but is excited to tell the world about her awesome sister on her cape.
I know she will be very excited to share it with you and her class!
Thank you for your time.
Elissa and Chris