My daughter Avery was never supposed to walk or talk. She was born with a chromosome disorder so rare that it didn?t have a name. Yet there she was, 11 years after we received her grim prognosis, grinning from ear to ear atop a human pyramid, as she represented Team Canada in her red and white cheer uniform. In the audience, at Disney?s ESPN Sports Centre, my husband, Adrian, and I cheered and cried.
The first time I cried for Avery was under very different circumstances. It was when the doctors sat us down and prepared us for monumental physical and cognitive challenges, based on what they could deduce from the outcomes for kids with a similar genetic deletion. They warned of profound intellectual disabilities, impaired language and motor skills, seizures, and heart defects. When the doctor said, ?Of those on record who survived childhood?? I stopped processing.
As predicted, failure to thrive, angry infections and violent seizures kept our daughter in hospital for months on end in the first year of her life. I was constantly hovering over her crib, exhausted with worry and grieving the loss of what I?d anticipated life would be like with my new baby. Pregnant, I had fantasized about a bustling social calendar with my daughter, not a calendar packed with specialist appointments. When Avery was two, I sought help from a therapist for anxiety. Then after witnessing Avery have a seizure that nearly took her life, I sought help for post-traumatic stre...