Emmy’s progress has been slow and steady. I had this image of the doctors removing the ventilator and Emmy jumping into my lap and saying, “Hi Mom!” It hasn’t been like that. It’s been much, much slower. But we’re moving in the right direction.
When Emmy was first diagnosed, I thought a lot about the developmental issues she would face. I thought about schoolwork and bullying and driving and independent living. I didn’t focus on the medical aspect of Williams syndrome. It seemed more distant. I could easily understand schoolwork and bullying. I couldn’t wrap my head around cardiovascular issues and hypercalcemia.
What has happened over the past few weeks has made the medical issues very real in my mind.
Just last night, our tight-knit Williams syndrome community lost a beautiful 3 year old boy who had heart surgery on May 23. I am heartbroken for that family. It physically hurts.
People with Williams syndrome have a special smile. I see that little boy’s smile in my mind, and it will stay with me forever.