dawn

when i started writing about sophia and our struggles with prader-willi syndrome, things were rough. my writing was rough. my life was rough. what i wrote was dark. i was having a hard time seeing the light, and then, when i did see it, i was convinced it was a train.

what i wrote was factual. focused on doctors and therapists and surgeries- the technical aspects of it all. i was having a hard time with the feelings part, because i didn't like how i was feeling. the helplessness, the hopelessness- it was almost too much to bear.

today, things are different. it's been over a year since sophia started therapy through early intervention. it's been eight and a half months since she started receiving her injections of human growth hormone. she has been "awake" (sophie version 2.0) for three months. we have almost stopped relying on her feeding tube. she babbles and laughs. she has learned to sign to tell us what she wants. she doesn't crawl, but she rolls and sits up all on her own to get into the things she is interested in. we have finally had to start so say no, because she is exerting her will and getting into trouble.

all of this brings me joy. these simple things, every milestone, is triumph. sophia earns every celebration.

i see the light and it is the sun. it is sophia. i know now that there will be dark days, but i will revel in the sunshine. i will write about the quality of the light and be unafraid to acknowledge the shadows.

i am excited for this dawn. i am looking forward to sharing our mundane, our silly. it is nice to move out of the dark and into the light.