It’s often said that parenting is a never-ending learning experience. When your child has a facial difference or disability, the learning is compounded several times over.
This is why I volunteer as a Peer Supporter for AboutFace’s Peer2Peer Program: to support other parents in the way I wished a parent who had lived experience had been there for me when my daughter was born.
For most of my pregnancy with Sophie, everything went as planned. When I was 33 weeks pregnant, a regular OB appointment showed that the baby was measuring small for her gestational age. A subsequent ultrasound showed pleural effusions, which can be indicative of genetic abnormalities.
My husband and I were told to expect lung issues, but when Sophie was born, it was immediately clear that more was going on.
Sophie was diagnosed with Klippel Feil Syndrome (KFS), a random genetic mutation that caused – in her case – craniofacial differences, hearing difficulty, scoliosis and other health concerns.
The shock of this unexpected diagnosis was followed by extreme and often unpredictable emotions that continue to this day. I’ve learned that ongoing to therapy as well as acknowledging my emotions without judgment are critical to caring for myself and supporting Sophie through the challenges she experiences. When she had major facial surgery at the age of ten, the pain of her long recovery was matched by the emotional impact as she began to understand that, even with surgery, her face was not going to look like everyone else’s.
Sophie is now a teen – unique, artistic and intelligent – and is still writing her story. Being a part of groups like the facial difference community helps me to continue to be her strongest ally.
