The Start of the Journey

Technically, the journey for an ear started on May 8th, 2002. Miss Kennedy Grace Goodwin entered this world and stole our hearts. Within hours of birth, she was diagnosed with Hemifacial Microsomia/Goldenhar Syndrome: no right ear, only pieces of cartilage; small right jaw; right-side facial paralysis; mishapened head; deaf in right ear; possible vision issues in right eye; large pockets of fluid in her brain; spinal/neck issues; single kidney...just to name the main issues. The birth of our sweet baby girl began the journey for an ear (among other things!). Immediate with the diagnosis was the promise that a doctor could someday fix it, that there are all kinds of options in this day and age. And so our journey began.

At six months old, we made our first trip to the UNC Craniofacial Center. Talk about a nerve-wracking visit...a 6 hour day scheduled to include about 10 different specialists. We met with dentists, orthodontists, speech therapists, a social worker, a psychologist, plastic surgeons, maxofacial doctors, ENTs, audiologists and I'm sure there were more. Each one had their own concern about Kennedy, each one had their own opinion on what her future life would be like. I remember going home and crying that day. I had never felt more alone in my life.

See, that's the thing about having a child with some special need...no one ever really knows what life is like for you unless they walk a very similar path. We all have our own paths that we can say that about (and in no way is this path any more important than your path), but when you're feeling totally helpless where your child is concerned, it can be a very lonely place. I often think about how different coping would be if these same circumstances were freshly thrown at me today, in the time of a social media blitz. But I digress.

From birth, we've been saying that someday a doctor will give her an ear. We made annual trips to the UNC CFC where the plastic surgeon talked every visit about plans for future ear reconstructions. We always knew that we wouldn't move on it till about age 7, an age where the ear has grown close to its forever size. But when she hit 7 and it was time to really make some major decisions, I just wasn't sold anymore.

At that point in Kennedy's journey, she had already had seven surgeries (all life-saving and absolutely necessary). She had died and been brought back to life, something I hope none of you ever have to watch with your children. She had been on life support following two different surgeries within a year of each other. I had also vowed that in order to keep her alive, she would never undergo surgery again at UNC hospitals. Which puts a halt on things when you're dealing with UNC doctors.

At this same time, I also started to trust my instinct on doctors. As long as we were just talking about it, sure, I could discuss it with anyone. But by that point, I was pretty good at determining which doctors were a good fit for us. And even though the UNC plastic surgeon agreed to operate at a different hospital, I knew in my heart that he wasn't the right person. I knew I couldn't move on withour exploring other options. I knew it was time to continue on with our journey...

(NEXT BLOG: A Fork in the Ear Journey Road)