A few short years ago, God gave us an unexpected blessing in our youngest daughter. I say unexpected because our third child was born with Carpenter Syndrome. This means she was born with a hole in her heart, fused sutures, shortened limbs, extra toes, extra finger, an umbilical hernia, malformed hips, extra bones throughout her body, potential metabolic issues, possibly missing molars, an extra high palate, and lowset ears. Add this all up and you get a child that doesn't necessarily look like every other child in the nursery. She's had heart surgery to repair her VSD (hole in her heart), two cranial vault reconstructions during which they expanded her skull, and an endoscopic third ventriculostomy to relieve a build up of cerebral spinal fluid. As a result, she has a barely noticeable 2 inch long scar on her chest, a small crescent shaped scar on her and a large, very noticeable, wavy scar from ear to ear.
This is Miss A.
She's a happy, joy filled child with a great deep belly laugh and a smile that takes up her entire face. She lives up to the meaning of her name, “Fountain of Joy”. She has these huge blue eyes framed by beautiful, dark, heartbreakingly long eyelashes. She loves Cheerios, bananas, and pasta but hates loud noises and lots of "stuff" going on around her. She loves her brother and sister and patiently puts up with their sometimes overly zealous kisses and hugs. She cries if Mama doesn't pay enough attention to her or if someone leaves the room without saying goodbye. She has been poked, prodded, cut, and stitched and still smiles when a nurse or doctor talks to her. She is loved and prayed for by people all over the country. People we've never even met. She melts hearts with her big eyes and even bigger smiles. We relish every tiny milestone….standing, sitting up, reaching for stuff, feeding herself, nursing…breathing. We thank God for the gift that is this beautiful girl…our family would be incomplete without her.
And that’s where this blog comes in. You see, A’s journey is actually our journey. It is the story of a family. Every tear, be it of joy or sorrow, was shed as a family. Every milestone, every moment, was and will be experienced as a family. A’s journey is our's Family journey. Dad, Mom, Big Brother, Big Sister and, of course, Miss A
