As we have journeyed through life since Getty’s diagnosis, there have been situations or experiences that would be far better explained from the lyrics of a song. You know how a song can really capture a thought, feelings, or just an overall summary of an experience.
Well as Mark, Getty, and I sat in a room in the department of Pediatric Specialties, and we watched doctor after doctor introduce themselves and talk to us and then leave, only to have another one come in and do the same. Kind of like a revolving door of specialists. At exactly the same time there was a song playing in my head, perhaps to calm me, but really to capture the experience of September 7th. I could hear the song Wonder, by Natalie Merchant in the background of my mind. It is a sweet song that embraces the mystery of the human being. I am bias, I think Natalie wrote it for all of our beautiful SMA babies. 🙂
Some of the lyrics perfectly capture Getty’s experience. “Doctors have come from distant cities, just to see me, stand over my bed, disbelieving what their seeing. They say I must be one of the wonders, God’s own creation, and as far as they can see, they can offer no explanation.”
There was a moment yesterday that reassured me that Mark and I were doing all we could for our little owl. The neurologist mentioned how “plump” she looked. “She must be getting so much love, keep it up you guys.” Mark and I grinned from ear to ear.
Getty was examined by all of her doctors and they were just elated by her progress and were excited by her strength. We couldn’t agree more.
The picture attached is a Getty and her Crunchy Lion. She seems to take him everywhere she goes.