We worked as a team, Sophie and I. She brought the plates and scraped them clean and I stood at the sink with hot soapy water. These ordinary places and mundane tasks seem to be the very places where we flip ourselves inside-out to one another. She started the talking tonight. "Mom, how are you going to take care of Calvin when your old? Like, 92?" I laughed, "We will probably both be gone by then … [Read more...]
Victory in the Seeming Loss of Special Needs Advocacy
It was a verbal game of chess. Winner takes all. If my son won the argument, we would return home. If I won, we would get out of the car and walk into the church. When John added a new reason why he didn’t want to go inside, I was sure he’d made a fatal mistake. He said he felt “stood up,” as he attended church each week. I countered with a correction, “’Stood up’ means showing up and no one is … [Read more...]
Lessons from a Children’s Hospital
Lessons from a Children's Hospital aren't lessons any of us really want to learn. They are the lessons best learned from textbooks rather than in the field. I wish that was the case here. No such luck. After Evan's most recent stay at the hospital I took from it some things that were more than just medical. It taught me a hospital stay is more than meets the eye. For us, an emergency trip to … [Read more...]
Power In The Body of Christ
Have you ever had one of those days (weeks, months) where you just felt like giving up? Yup. I thought so. We all have days, weeks or months like that. Especially those of us who live with children or adults with significant disabilities. Our son Joel, who has autism, has been having a rough time lately. A hospitalization for depression last fall. A 6 week manic spurt this spring that … [Read more...]
The Call: A Grandmother’s Reflections on Getting a Diagnosis
Read below for a guest post from Joan Hartley. It was a simply beautiful, sunny day in May. My husband and I were enjoying a brief respite from the cares of the world in a picnic shelter overlooking our town’s river. Just a couple weeks prior, our daughter had called us while we were on a spring boating adventure with friends. “The doctor thinks he might have Williams syndrome,” she had … [Read more...]
Momma Bear Lets Go
There are momma bears, and then there are MOMMA BEARS. Those of us who are raising a child with a chronic illness, disability, or special need tend to fall in the second category. While not necessarily qualifying as a “helicopter parent,” we do tend to stay a little more engaged than the average mom or dad, monitoring for anything serious in the way of medical, psychological, behavioral, or social … [Read more...]