CaringCalm

Some people will know that I've been busy. I work full time, I parent, I manage Alexis' PCA staff, and I try to maintain a sense of sanity. I think I walk a fine line, but so far it works.

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)

Dear Bob,

“In college I had three majors, and eventually went on to earn a PhD and MBA. But my biggest life lessons came from my MOM degree. When I was pregnant I found out I was having twins. Baby A and Baby B were growing fine until week 29, when suddenly I didn’t feel well and went to the hospital. At that point, the doctors told me that they couldn’t find Baby B’s heartbeat…”

So wrote Catherine Rose replying to my recent email request for your stories, in your own words. The link below will take you to the full account she sent. One excerpt that follows, eloquently captures the purpose of my last email and the work of the Gold Foundation to promote patient-centered care. We can amplify the national dialog between patients and healthcare providers – as well as the dialog and insights patients share with one another. When you support the Foundation, that’s what your gift helps to accomplish.

Please, before you read further, take this moment to make your contribution - or add to one you've made, if you can.

Our programs reach every graduating medical student in the US, their teachers and thousands of practicing physicians. With your support added, so will words like these from Catherine Rose:

"As a parent of a sick child, I’m asking medical professionals to think about how their actions impact those they treat, outside of tests and prescriptions. To do that, here are a few things to things to keep in mind:

Always acknowledge, appreciate and respect the family.
Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve” our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better.
We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours.
We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power."

You can read Catherine’s full account here as it was published this past August in the Pediatric Health Blog of Boston Children’s Hospital.

If you have a story I should tell, please share it by reply email. And if you didn’t do so above, I hope you see now the value of your gift.

Our good health – and our nation’s – depends on both.

Richard I. Levin, M.D.

President and CEO

619 Palisade Avenue | Englewood Cliffs, NJ 07632 | (201) 567-7999 | www.humanism-in-medicine.org

https://app.e2ma.net/app/view:CampaignPublic/id:1400483.12979254927/rid:cf1406161565d19ad5b57473ae40ede7

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.
Catherine

You've realized by now that I'm not posting often to this blog. When I set it up, I used it as a chance to post some materials for a presentation for Federation of Children with Special Needs.
I also used the same presentation materials for the 10th Annual CHARGE Syndrome Conference.
I organized both talks around how Alexis changed my life and how to maintain my sanity I needed to get a lot more organized.
So I hope that I can share some of those techniques with you all with this blog. Please feel free to review previous materials posted - I've gotten great feedback on the "Quick View" and on the "Medical Patient Summary."
Please feel free to download onto your computer, edit them as you want.
Please feel free to print them, write on them.
The point is to use this as a starting point for your own organization program. What works for you, may not work for me - we are all unique in that way. But know yourself, know your limits.

I also want to share a small thing about the 10th Annual CHARGE Syndrome Conference that I attended - I didn't attend all of the sessions. The conference occurs every 2 years - during my first conference in 2009, I attended every session - I got woefully overloaded with information, anxiety and concern. Thankfully there were many uplifting sessions to help balance. But I found myself exhausted from the Conference. This conference, I knew myself better and cared for myself more.
When I was getting "anxious, concerned or overloaded" - I took a break. I figured I wasn't going to be able to absorb the information in the session in that "state of mind". So I took a break. Every so often, we all need to take a break.
Do yourself some good, take a break, care for yourself and know your limits.
Enjoy reading more about how I got and get myself organized for Alexis' care.
Please write me email at cat_rose at comcast.net if you want more information.
Catherine