Friday, January 28, 2011

January 28, 2011: Orlando, Florida...


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.

God night.

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:
the video:
the docs:
to donate:


  1. FYI there are flights to and fro Egypt by also other airlines just NOT from Cairo butelsewhere. Perhaps your friends will be able to get out of Cairo and travel to some holiday destination where there are several tourists and flights out. Good luck!

  2. Your post today brought tears to my eyes again ... I can't believe all what you went through this week.
    Praying for your friends and peace; for you to get all the help that you need to achieve these important goals.

  3. So so sorry....I don't Have the words..
    and I've been emailing Ellen, literally once a week perhaps your connections with bigger names could contact. I know my random emails are just sitting in an inbox. When they do open my 25 emails, they're going to think I'm crazy. Which I am, But will keep sending them.
    Hang in there. Love from home.

  4. I am so glad that you guys made it to Orlando...what a pretty place huh? I'm sure the weather is just fabulous right now. That is so awesome that you got to go to a spa! WOW, I would love to go to a spa and get the royal treatment. But you definitely deserve it. I'm sorry that you started to cry when you were thinking about Bella but, I hope that it also released all of the tension and anything else you had built up so that you can feel renewed and re-energized. Sometimes we all need a good cry! I cried as you were describing the room while laying on your back and that that is what Bella saw for 99 days straight. To think of her that way breaks my heart and I just love her so much and I never got to meet her. You and Ang being her parents, I'm sure it is MUCH harder for you.

    I am so glad that you guys didn't make it out to Cairo but, I am so sorry to hear about Joes friends. I really hope and pray that they are okay and that as soon as they are able, they find a plane out of there and back to the states.

    Great idea...about sending your info to Ellen and Oprah!! Let's do it!! I'm gonna start sending those emails right away. I'm with Sara though, maybe if some of your friends send emails or make calls as well they may be more influential in the decision of getting you guys on the show. I'll email our local news too! Maybe they can do a special interest story about you guys. I know the Press Enterprise did a story about Daylon and that is how I was introduced to EB. I participated in a fundraiser they were doing to raise the money they needed for MN and I fell in love right away.

    I know Bella is so proud of you guys and for all of the hard work you do every day!! God Bless you!

    Lots of Love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, CA

  5. Tim, what can I say ... it is not easy to lose a child. Hugs to you!

    I am glad that you had luck and stayed in USA. Egypt was a nice place for a vacation just weeks ago, sometimes things change fast.

    You try to treat your grief with work... I hope you don't burnout trying to save other people. Give yourself time to rest. And of course - good luck with your plans!


  6. Tim: I hope your friends will be able to leave Cairo shortly. Here in SD we are watching the news also as a local college has aprox. 90 students and faculty there. The college band was doing a series of concerts and were originally staying near the center of the city. Yesterday they moved to a hotel closer to the airport and away from the riots. The students were to have flown out today but the flights got canceled. They have been re-scheduled for Sunday and Tuesday. (God willing) Our local news media were able to reach them by land line today. This is a quote from one college faculty:
    "This whole event that you see evolving on television is in about a four square block area, if even that. Once in a while they move and they try to cross a bridge or they try to come back the other way, but it's all happening in the square. You leave that, and there's nothing. There's people out washing their cars. There's kids running around. All these things are happening, and it's just a very complex and very interesting place to be," Heegel said.
    Hopefully your friends are in an area outside of the square also and are staying safe until they are able to leave.

  7. Dear Tim,
    Nice to hear you had a good spa experience. It is another world when you first do it! I felt the same way. That pain that pours out of you is healthy.
    I am praying for you and Ang.

    I wanted to share you with my own little story that was inspired by reading this blog for a long time, just before Bella's death....

    I tend to get dragged into dramas because I see the negative in situations. I have been wanting to recognize the signs and change my reactions for a few years now.

    I have been "steering my course" lately. I have been avoiding the obstacles to living a positive life. I can't tell you just WHAT in this blog has helped but I know it has.

    So, thank you. I read once a week but I don't often comment unless I have something to say.

    I'm relieved you are safe. I'm looking forward to seeing you on Ellen or Oprah - I'll write!

    Take care my friend,