“Finding out that your child is going to be born with life-threatening struggles is beyond overwhelming. How did I feel? I cannot explain the devastation that I felt. I could not bear the thought of losing her, nor could I bear the thought of her suffering. So I started to pray and plead to God.... Continue Reading →
How to Ask About My Disease/Disability
I’m never hurt or bothered when a friend kindly asks me about my syndrome. However, I have been hurt by strangers and friends alike -- both children and adults -- who have chosen to insensitively ask questions or make rude remarks about my anatomy. Words matter. Questions and conversations can be hurtful or encouraging based... Continue Reading →