Wednesday, November 26, 2008

Engage With Grace

This past week I was contacted by Paul Levy (who blogs at Running A Hospital) asking if I would participate in a project called "Engage With Grace". I gladly accepted. I've had personal experience with watching a loved one die the way they chose and unfortunately I've also had experience watching a loved one die without their wishes being heard. "Engage With Grace" will help facilitate an important discussion that everyone should have with their loved ones. If anyone would like to add this post to their blog (should be left up starting today and ending Monday) please email me and I will send you the code.



We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to This post was written by Alexandra Drane and the Engage With Grace team)

Sunday, November 16, 2008

10 Years Old!

I had been working on a blog post for over a month now, spending most of my writing time staring at the screen and crying then deleting anything that I was actually able to type.

I still can't figure out why this birthday is hitting me so hard. It has taken me by surprise.

On Paige's first birthday I was an emotional wreck. I was fine through all of the planning. I was fine that morning while I was setting up the large room we had rented that would be holding the 56 attending guests. I was fine during the time we greeted each and every person who came to celebrate Paige's first year of life. Then, stupidly, I decided to give a speech. (people who know me well can attest to the fact that public speaking is not difficult for me). Even as I write this today, I begin to cry when I think back to that day. I opened my mouth, prepared to thank everyone for their emotional support, when out of my mouth came this squeaky voice. Then the tears started. Really started. It wasn't a pretty cry. It really wasn't a pretty cry. All of the hell we had been through was hitting me. It picked that time to attack me and I couldn't function. I turned to my husband (anyone who knows him very well can attest to the fact that he HATES public speaking) for help. He stared back at me with this look of "what the heck happened to my wife?" and did not say a word. Looking at him made me cry harder. We had been through so much in one year and here we were, still together, holding our beautiful child. I managed to squeak out some lame, very short, speech and then ducked out of the room to cry. It was an ugly cry. Primal tears. Anger. Fear. Joy. It was all there. It was painful. Still is. I had never allowed myself to cry much before that moment. There I was, outside of a room filled with 56 people, in the midst of an ugly cry that I couldn't stop.

Each year Paige's birthdays were emotionally easier for all of us. Each year the NICU experience consumed less of my thoughts on her special day and ended up as only a late night mini conversation with hubby. I am so thankful that the NICU memories can take a backseat now.

Back on that day of her first birthday, I never could have imagined a birthday without the main focus being the pain of the NICU time.

As Paige's birthday approached this year I was taken aback by the flood of emotions. It had been easier each year. Why was I going backwards now? I am still not sure why but it has upset me because I couldn't even get a blog post written. Geesh! I'm never at a loss for words. lol

Then along came an email from Chris. Oh Chris, you have no idea how much your words helped me (thank you! thank you! thank you!). You are right, "we have come a loooooooooong way baby!"

Paige is doing wonderful. Homeschooling was the right choice. She has gained about 6 pounds and looks healthy. Her meds are working and her skin is healing. She is an avid store rock wall climber and would do it every day if she could. She is surrounded by family (who moved here to be near her) who loves her very much. She has a strong spirit-one that drives her to many new areas. She is in tune to her surroundings and the people she encounters. She feels strongly about many issues that, once given the opportunity, will talk your ear off about. She is a beautiful person. We are all so lucky to have her in our life.

Double didgits! 10 years old!! Woo Hoo!!

We decided to take a family birthday vacation to a large indoor waterpark. We all had lots of fun. On her birthday we had a party with her local grandparents. I caught myself staring at her, in awe of her. She really has come a long way. I know the future does not guarantee that her path will always be this good. But, for now, we are enjoying these good days.

My dearest Paige... Happy Birthday!!!

(Correction... Hubby just read my blog post and has a bit of a different memory from Paige's 1st birthday. First he wasn't happy that I said that he hates public speaking. Correction... he only is comfortable speaking in public if he has written the speech ahead of time. 2nd correction... Hubby is sure he did say something when I was at a loss for words. Jokingly he told me that he said something about the blubbering person next to him but all joking aside, he is sure he said something. lol Gotta love hubby's memory!)