We throw around words all the time, using hyperbole to force others to understand in the flicker of a moment the feelings we have spent days, months, even years cultivating. We don’t always mean what we say, and parsing language can often be an exercise in futility.
Since Hope was a newborn, I have found myself in tears several times over the thought of someone kidnapping her and how helpless she would be. This is of course extreme—a sensational story pieced together from movie plots and anxiety—and there are more realistic events that could lead to Hope becoming lost.
In a few days, we send Hope for ear tubes and an adenotonsillectomy. But unlike her heart surgery, this is technically elective.
This was a huge reminder that with the 7-fold risk of sexual abuse of a person with an intellectual disability, we need to draw a firm line between what is acceptable with family versus how to behave around friends and strangers.
My children have taught me to be brave and to look past the superficialities of the world, straight down to what really matters. In my experience, this is what it takes to penetrate that final layer of anxiety in order to give my children the very best I can give.
Hope’s claim to fame has always been her hair. Waves hello and blown kisses, too, but since her days of newborn sweetness her hair has always been what’s drawn her the […]
This is an entirely new world that we’ve so completely absorbed it feels like we’ve had Down syndrome all along and therefore find it fairly unremarkable. We haven’t lost our identities to a diagnosis, or we have and I haven’t noticed.
Since before Hope could even hold her head up, I’ve dreaded her entering the public school system. I dreaded not being with her during her therapies. I dreaded handing off […]
What was frustrating Hope so much that she was resorting to these physical behaviors? After pinching me she would feel sad and cry and sign “sorry” before giving me a hug, which I of course always accepted but wished I could receive under different circumstances.
I’ve never felt like anyone else we know when it comes to Hope’s teeth. Hope was a year old when her first tooth broke through, and it took over 2 months to come all the way down; the pediatrician said to expect 2 to 4 weeks.