It is through tired, tear-drained eyes that I write you tonight. I am so tired. I am in Winter Haven, Florida at the beautiful home of Joe's dear friends Dean and Sonny Jackson. They are just the most laid back, easy-going and genuinely nice couple. I am finally decompressing after a pretty rockin' roller coaster of a week. Woof. We are still freaked about about the chain of events over the past 72 hours. There were four planes scheduled to head out of JFK Wed. night. The first two made it out.
We were the next plane to leave. We were that close. We were plane number three.
Anyhow, we finally got out of NYC this morning and arrived in beautiful Orlando this afternoon. Dean picked us up, and took us to eat a phenomenal Cuban meal, followed by a trip to the Omni International Hotel Spa for a much needed massage. I was a little embarrassed because, one, I couldn't afford to go, to which Joe shrugged off my concern by treating me, and two, I've never been in a swanky hotel spa before, so I had to ask the guys all kinds of really basic questions. I fought off feeling dumb - I was just honest and not ashamed or anything... it was actually nice to just be candid.
Anyway, as I lay down on the massage table, I looked up at the ceiling. I realized the room was the same size of Bella's ICU room, I was flat on my back, just like she was for 99 days straight. Gentle music was playing in the room, just like I used to play in Bella's room. However, this time, I was finally going to receive the nurturing. I immediately started crying. When the massage therapist came in, I explained that I realize that when people release physical tension, it also releases emotional tension as well, so I apologized because my daughter recently died, and I had a lot of tension in me still. She was very gracious, and as she worked on the nightmare called my neck, the tears just streamed down my cheeks thinking about Bella laying there in that same position. I thought about how much I did, and how much more I wish I had done for her. Unfortunately, her EB prevented any kind of deep tissue massage much less regular skin to skin contact, but I rejoiced in massaging her with Alwyn cream during dressing changes. That was such a treat because my lotioned up hands got to caress our daughter the only way possible. That tactile connection with her was so glorious. As the therapist massaged me, I humbly allowed my guard to just finally crash to the floor around the table like tired, rusty, battle-scarred plate mail armor. As the armor fell, so did the tears.
I have been treated so graciously and generously on this journey, sometimes it is really hard to be with. It reminds me of when the wonderful people of our church brought us meals and groceries after Bella was born. When I put the Providence Goggles on back in early June (June 3rd?) of 2009, I don't know if I realized the view I was in for. The view has been so much more wonderous - even with all the pain along the way - than I could ever have imagined, and it is really clear to me that this isn't even close to over... spiritual Mount Everest.
Today, again through listening and learning from my friend and mentor Joe, I realized that this $3 million campaign is just the precursor to two things that I have wanted to get to for over a year now...
The Five Percent Collective and Core Care.
This campaign is going to create a platform to launch the next phase of Bella's Gifts upon the world. As a quick review, The Five Percent Collective is the % of couples that stay hitched despite having children with special needs, critically ill, or deceased children. Angelique and I plan to share our relationship model with other parents of special needs, critically ill, and deceased children so that maybe over time, we can change that statistic for the better. Core Care is a website that will act as a clearing house of information, resources, and inspiration for caregivers to help treat caregiver burnout. It will address specific areas of concern like financial, emotional, relationship, spiritual, domestic, educational, etc.
These two projects were conceived in the summer and fall of 2009, but I knew I wasn't ready to really launch them at the time. God put them on the horizon today, as if to say, "Realize that this project is going set the stage for those two projects. Be ready!"
God, I am in. We are in. We are The Divine Planet.
P.S. If you want to contribute in your own way, please write The View, write Oprah, write Ellen, write your paper, write 5 people or organizations about my family's journey. For now, here are the pertinent links:
the blog: careforanabella.com
the video: youtube.com/watch?v=Wd-H_IxPmI4
the docs: http://www.ahc.umn.edu/eb/
to donate: childrenscancer.org/bella