What's been happening in the past 16 months:
- Along with many family, friends and colleagues, raised $7500 for Perkins (for their Marathon Team who ran Boston's Brutal 95-degree day) - many thanks to Stephanie for having a fantastic run that day!
- Jessica (age 5) had her attempted ASD repair in Cath lab in Nov 2011 and then her successful ASD repair via Open Heart Surgery in Apr 2012
- Changed jobs from working in Philips Healthcare Finance to working in a combined role between Philips Lighting and Philips Healthcare to launch "LightAide" a product for children with visual impairments. Contact me if you're curious about this.
- Brainstormed additional ways to support other families with technology and advice from seasoned parents, thanks to Holly for partnering with me along in this effort.
- Attended several conferences for work, including a large sales meeting - where I was recognized for my work on "LightAide" and then TEDMED where the prototype of the LightAide was demonstrated. I was honored to meet Michael Graves, who has very progressive ideas about design and healthcare. It was an honor to meet him and appreciate his story. Learn more by watching here: http://blog.tedmed.com/?p=579
Another fantastic person I met was Loreen Arbus who is a talented trailblazer in many areas, but most especially providing a voice for people with disabilities. She accomplishes so much, reading about her makes you feel like she must manufacture extra hours in a day: http://www.shemadeit.org/meet/biography.aspx?m=109 and http://tedxwomen.org/speakers/loreen-arbus/
From the TEDMED experiences, I observed great ideas for products, for software, for communicating between teams of people and for making medicine better than it is practiced today. However, as I flew home from Washington DC, I had to write my "TEDMED" talk. I was compelled to write what I felt was missing from TEDMED stage, the perspective of the patient and the caregiver. I had to earnestly start sharing my experiences so that other families can benefit.
On the airplane, I wrote the outline for: http://childrenshospitalblog.org/our-patients-stories-a-is-for-alexis/
I shared it with several friends and then sent it to a Doctor at Boston Children's Hospital. She put me in contact with their Thriving Blog team. Then between August and November, 4000 people read the blog post and at one point the Facebook post had 10,000 likes. It's clear the message was important.
So, where does all of this taking me. . . . to a bold frontier where I can help more patients and families. I hope to influence medicine to be about caregiving for everyone and not just "problem solving".
Enter another synergy. From a family listserv, I received the request to share stories about patient perspective from the Arnold P Gold Foundation (http://humanism-in-medicine.org/). I am honored they have decided to use our experience as a way to publicize more about their organization and the important work they are doing.
(from their letters today)
I realize this is more about the journey and less about the "Caring Calm" as the Blog promises, but stay tuned for new and different posts - hopefully there will be more information to follow.