In January 2005, our unborn child was diagnosed with Truncus Arteriosus, an uncommon, complex heart defect. On May 9, 2005, our daughter Charlotte was born (4 weeks early). Her heart was repaired by the incomparable Drs. Gus Mavroudis, Carl Backer, and Bob Stewart on May 16, 2005 at Children’s Memorial Hospital in Chicago, IL. Charlotte spent 49 days in the PICU and then came home to us, loaded with oxygen, a feeding tube, and lots of medications. Since then she has had two angioplasties, a feeding tube (come and gone), ear tubes, and a lot of other boring medical things. Today she is a healthy, happy nearly ten-year old.
This blog began when Charlotte was first in the hospital as the diary and continuing updates of Charlotte’s journey through her first surgery to life as a regular kid. Today I continue to blog about Charlotte, even though she leads a fairly regular life. Occasionally, like this spring, we come back to the medical updates and the blog’s original raison d’être. Nowadays, I have to ask Charlotte’s permission to post a picture, and I’m a bit sensitive about what details I post as she hits puberty and the complications that being a heart patient adds to that already complex emotional stage.
Charlotte sees the world through eyes filled with wonder. She is creative, kind, non-judgmental, and quick to forgive. Through her actions and observations, she teaches me that we are born that way, and that it is our experiences in the world that harden us toward each other and our surroundings. She reminds me that it is important to be childlike–full of wonder, kind words, forgiveness, creativity. Sometimes she is quite childish and it drives me crazy.
I share her world with you–with the occasional medical update as necessary–to continue to show you Charlotte’s heart, not just the one the doctors fixed, but the one that makes her our extraordinary daughter.
(updated on 2/22/2015)