Welcome! The goal of this blog is to start a conversation about the value of potential and of setting positive expectations in health care, particularly for children born with health conditions. They are surviving, but are they thriving? Can we redefine what we mean by “patient outcomes”? Join the conversation!
The girl with wavy brown hair looked out from the photograph with a sweet smile. Deep behind those eyes and perfectly turned nose, however, lay the gyrations of the gray and white matter of her brain which had somehow gone awry. She has autism, explains my friend JB, who was showing me photos from an iPad app they use, called Pictello. It is a powerful tool for JB to create “social stories” to help children with autism develop skill sets to become more functional in this world. The app costs $20 and is genius in its simplicity. She can upload photos or videos and add custom text to create a personalized story book which can be viewed on an iPad. It will even read aloud in pre-loaded voices or the voices of people familiar to this little girl, such as her family, JB, or other trusted sources. When JB first met her, she was a toddler trying to start mainstream preschool equipped with one single word, “flower,” as her only communication tool Continue reading
ikigai- “reason to get up in the morning”
The refrigerator door stayed open a bit too long as I stood there grinning, transfixed in a spell of maternal happiness to see a gallon of milk in the door. A gallon of milk! This past year my husband and I became empty nesters, dropping our youngest off at college and returning to a home devoid of noise, activity, vibrancy, errant dirty socks, and gallons of milk. I would get a pang every time I opened the fridge and saw the tiny quart of milk that now rattled in the door, which more often than not started to spoil before we could finish it. We would make wan jokes about how lame the dishwasher had become, filled mostly with dirty coffee cups and spoons and an occasional plate or two. This past week my youngest son returned from a successful freshman year, his presence filling the house with as much thick color and warmth as the carpet of laundry now strewn on his floor. I love it. His older brother, one of the twins, returned home not long after, but he is only home for a brief stint as shortly he will be heading to New York City for a summer internship. He will be a senior next year, and the reality that soon real life (and the need to find a job) will be looming beyond college is not lost on him. He is coming to terms with something I have been thinking about lately, which is purpose.
It was such a pretty although still a bit chilly and breezy day for such an unusual sight. As I took a walk on the beach recently, I caught sight of several groups of people dotted along the shore. They were clustered in a range of ages, sometimes spanning several generations, small circles of families and friends and young couples all doing what we never do anymore: looking up. So much of our lives are spent looking down at things like phones, computers, paperwork, and chores. At the beach, I look down for treasures of seaglass, shells, or rocks, or look straight ahead over the waves to the horizon to contemplate any number of things. But steadily gazing upward? I followed their sight lines Continue reading
I did a double take as I passed a truck pulling a trailer driving south returning from Portland, Maine. While pick-ups pulling all sorts of gear or animals frequent this stretch of highway, I literally swung my head back around to re-read the back of this one. It was proudly painted with a large U. Maine black bear logo presiding over the words “Concrete Canoe Team.” Concrete Canoe team? At first I thought it was some sort of inside joke that characterizes road trips with a bunch of college buddies. But as I passed by (what, they were in the slow lane…) I saw Continue reading
I watched the small baby lay silently sleeping, his little body propped up in a full sized hospital bed, dwarfed by monitors and machines and bags of medications that looked as benign as pure spring water and yet I knew were controlling most of his bodily functions including this induced sleep. His peaceful demeanor seemed so incongruous to the palpable intensity of everything around him. Despite the alarms, incessant beeping, murmur of voices, and general noise and hubbub of the ICU, he went on sleeping, utterly oblivious. In this environment where every organ’s function is externalized and micro-managed down to each breath and each heart beat, Continue reading
My brother used to punch me every time a Volkswagen Beetle drove by. The rules of the game were simple: the first one to spot the Beetle got to call out “Punch Buggy” followed by the car color (you know, to verify authenticity, no cheap shots allowed) and throw the punch. Since my brother was older and taller, and could see out of the back window of the car more easily, the game should have been re-named Little Sister Sore Arm (the acronym of which, if spelled backward, must have been what my little sister self thought of my brother during this game). I don’t know how that game evolved, or why it had to be a Volkswagen Beetle specifically, but years later, the automative maker Volkswagen is still captivating consumer thought and play by asking an important question: can we influence people to make more positive choices by making them more fun? They used this concept to encourage people to drive more environmentally conscious cars, and propelled that idea into their “Fun Theory.” They host a competition to utilize fun ways to encourage positive outcomes (www.thefuntheory.com). This has important implications for health, as our population has become increasingly sedentary, and making positive choices like walking up stairs instead of taking an escalator can seem difficult to achieve. Check out this short video for this Fun Theory winner’s creative solution, and their remarkable results showing a 66% increase in healthy behavior:
I also think it has far reaching implications about play and fun in health care beyond the cardiovascular benefits. Why is fun important? Why do we play? And should we Continue reading
Picture this: a lone hiker on a windy, somewhat treacherous mountainous path strides purposefully forward, clearly at home in the woods. You watch him stop in front of a large tree overlooking a vista. He suddenly hoists himself up, scales the trunk, and settles onto a large branch to enjoy his lunch. It is only when he comes down and passes by you on the path that you realize he is blind. Totally blind. Continue reading
Every spring, I look forward to two things: the snow melting, and the NCAA basketball championship tournament. I watch very little TV, but for those few crazy weeks, I am glued to every March Madness game I can fit into my already bleary-eyed schedule. My alma mater is nearly always a contender, but that is only partially the draw. In truth, not unlike millions of other fans, I really watch in the hope of seeing a “Cinderella Story” emerge. There are numerous essays and theories about the psychology behind fandom and the desire to root for an underdog, and Continue reading