Spinal Fusion Surgery, T2-S3

The issue of Lydia’s scoliosis had been worsening rapidly over the last year. She had a big growth spurt as she crashed into puberty early - something not unusual for kids with neurological differences, I was told. It is called “precocious puberty,” which sounds almost cute. We were given the option to delay her puberty … Continue reading Spinal Fusion Surgery, T2-S3

Lydia is 9!

Sorry Lydia, it has been a bust of a birthday so far.  Lydia started getting sick a week ago. Congestion, crackly-sounding breathing, cough, low-grade fever, lethargy… then her blood-oxygen level started getting low so we went to the ER. And now she has been inpatient for three days at Children’s Hospital.  She has been slowly … Continue reading Lydia is 9!


Being part of a community of Lydia-like children and their families is both essential to our well-being, and yet very hard. There is a significant amount of loss. By that, I mean there is a significant amount of death. There is loss as well, such as your expectations of how your child’s life was supposed … Continue reading Remembering