Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.

Anyway.

I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!

The Best Giveaway Ever

Last night, I finished reading Because of Katie: A True Story by Karen Gerstenberger, a woman who I am proud to call friend and grateful to call a deep inspiration and source of wisdom, spiritual advice and compassion. Karen's daughter Katie and my daughter Sophie share the exact same birthday (March 8, 1995), so I've always felt a kinship with her. I literally began to read the book when I ripped it out of its wrapping, standing at the dining room table. I continued to read it through the late afternoon, lying in Sophie's room when she came home from school, even holding it as I cooked dinner. After the children were in bed and I'd finished catching up on email and blogs last night, I finished the book in bed, around 11:00 and quickly got up to send an email to Karen, thanking her for sharing her story with the world.

The book is an honest and quite searing account of the journey Karen's family took when their eleven year old daughter, beautiful Katie, was diagnosed with a particularly gruesome and rare form of cancer. The writing is gripping, harrowing at parts, but always informed by Karen's grace and honesty and courage. I believe it to be not just an important personal story, a courageous and honest portrayal of what happens to a tight-knit family as they cope with a grueling treatment plan, but also an important primer for people in the healthcare profession. There is little to no anger in this book -- only the right raging of a mother whose child is dying -- but Karen is generous in pointing out how "the system" worked and how it didn't. As a person who has worked quite extensively in the "quality improvement" area of children with special healthcare needs, I know that this book should be shared with all medical students, doctors and people involved in the care of children who are sick or disabled, and I hope it will be.

From a personal standpoint, although my own experience caring for Sophie for the last seventeen years is quite different than Karen's for Katie, I found renewed strength and inspiration reading Karen's account. I think her descriptions of her family's, particularly her own, growing and intense intimacy with Katie as her treatment progressed and then later when they knew she was going to die, resonated with me the most. I realized that my own family has a startling intimacy with Sophie, and while it might be overwhelming at times, it is, essentially, a gift.

Thank you, Karen, again, for sharing your story with the world, and I hope that everyone has a chance to read this beautiful book.

To begin to make that happen, I am thrilled to offer TWO autographed copies of Because of Katie to two of my readers. Please leave a comment here to enter the giveaway -- perhaps a word of support for Karen or for those who might need support in their own journeys caring for a sick or disabled son or daughter. I will announce the winners on Monday, February 20th.

THE WINNER OF THE GIVEAWAY IS: Taylor's Healing Arts. Please send me your email address ASAP!


I FORGOT! THE SECOND WINNER OF THE GIVEAWAY IS: se (Please send me your email address ASAP!