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.
What about the times when Hope refuses to sign or gesture or flat out do anything except melt into the floor in a sobbing heap of inconsolable toddler frustration?
During Hope’s hospital stay, the days and nights all blended together. The sun kept our internal clocks on track, but our days didn’t start until the medical team made its […]
We may have no clue where we are headed or what the road will feel like beneath our uncalloused feet, but we go because the only thing worse than hurting trying is the fear of looking back at time wasted.
One day when Hope was 23 months old, she just got it in her head that she could stand like anyone else and persisted until she was totally upright.
We want Hope to be motivated from a place within herself. Her reward for succeeding is self-confidence.
Hope underwent her sleep study this past August, referred by her developmental pediatrician following recommendations by the American Academy of Pediatrics to screen for obstructive sleep apnea (OSA) in children […]