Sunday, April 29, 2012

April 29, 2012: Recap...


Holy cow, I must first confess that I am getting really bad about taking pictures of life in the Ringgold clan.  When I was blogging daily, I was really good about chronicling everything visually.  Now that I am out of the daily mode and into the weekly mode, I just don't think of it as much.

Mostly, it's been part of an 'inward' trend that I have been really enjoying over the past months as I continue to wean myself out of social media.  I realize now that just about every.single.aspect of my and my family's life was public info.  At first, I did that as a service to other EB families who were considering BMT so they could experience as much of it as possible from wherever they lived.  Then, this pretty amazing relationship began with this community of 'strangers' across the globe, not all of which were/are EB families.  It honestly never occurred to me that anyone would bother reading another blog about something that they themselves weren't going through.  Shows how little I knew about the blogosphere when I found myself neck deep in it!

It's been refreshing to experience life and not need to share every piece of it with everyone else on fb or the blog.  I felt compelled to 'keep our readers up to date' as to the latest valiant and gallant actions we were taking... in anything.  It presupposed that our lives were in some way remarkable - meaning, worth remarking about.

The truth that I am coming to understand now is that we are just one little family navigating through life as best we can, just like you.  Nothing more.  Our story is not special.  It is not unique.  It is not 'more important' or 'more valuable' or 'more inspiring' than a million other stories being written on this planet  We're just using the tools that are available to all of us as best we can.  As simply as I can put it, we are just a typical family who encountered adversity, and chose the best route we thought we could in response.

It all goes back to utilizing two equations that I've written about...

1.  Remember to reach up for the hand from one of the 3 F's  (Friends, Family, Faith) when you get knocked down in life.  AT LEAST one of them will always be there reaching down to help you get back up.

2.  (V) (+) E + R = O

where E stands for 'events in life'
where R stands for 'our response'
where O stands for 'the outcome'
and where (V) stands for 'our vision/goals'

Events in life happen.
We respond.
Our response ultimately influences/impacts/transforms the outcome.

When we are really on top of our game, we create a vision for our life and set about manifesting that in the world.  Then, the world responds with its own events, and either we create that vision with less effort than we expected (and thus call the vision or goal "easy"), or more effort than we expected (and thus call the vision or goal "hard").

The (V) and (+) are in parentheses because they are optional pieces of the equation... like bonus pieces. Let's face it, sometimes life just hits us with something 'out of the blue' that was unanticipated, and it changes everything.  That's what Bella's EB was for us.

I work in oncology.

How many people wake up thinking, "Hmmm... THIS is the day/month/year I plan to be diagnosed with cancer..."?

Life's not like that.

Some things just seem to 'arrive uninvited.'

It's not inherently 'wrong' or 'bad' when this happens; Julian is a perfect example of this.  We were NOT ready to even begin to talk about another child when we found out we were preggers with Julian.  However, he's been a blessing beyond anything I dared to ever hope for again.

It's just that sometimes, things arrive uninvited, and when they do, what's your response gonna be?

Here's a revelation: we didn't know how we would respond to having a baby with EB in advance... how could we have seen THAT coming?  It's not like you can sit down and plan you're response.  People have called us strong.  We didn't ever think, "Hey, we can handle this because we're strong."

We didn't know we were strong until after we handled it, for lack of a better phrase.  We handled things/situations we would have said beforehand that we couldn't handle.

Bless your adversities.  They give you DIRECT ACCESS to witness your own strength and resourcefulness.  I GUARANTEE ALL of you could post comments immediately after reading this about times where you surprised yourself with what you were capable of.

Things aren't happening to you, they are happening for you.  (NOT my words... I heard Oprah quote Tony Robbins on that one).

So... in summary, events will occur that will seem like an 'uninvited pest,' and, YOU have resources inside of you to transform that uninvited pest into a welcome guest (thanks to Joe Polish for those two monikers... albeit he uses them in a different context).  You have the ability to bless and be grateful for any situation you face.  Whether you bless them or not... THAT is a choice many people don't realize they even have.

This aptitude is part of your human DNA.  It's why we're not extinct.  We are resilient.  We adapt.  We learn.  We remember.  We have the innate ability to transform 'the meaning' of any situation we face into one that inspires us/others, or at least into one that allows us to keep moving/functioning despite the intensity/tragedy/horror/etc.

What event are you facing that seems like it is happening to you, or someone you love?  What if God came to you and spilled the beans and told you it was actually happening for you, so that you could experience some key piece of growth your soul has been thirsting to learn while here?  How would that event suddenly occur to you?  Might the view change just a little?  What if that little was all you needed in order to get into action and not be stuck/crushed by the event at hand?

Throughout Bella's journey, I always asked myself, "Tim, what's the most inspirational way you could respond to this event (whatever the event du jour was)?"  Then, my brain would consult with my heart, and together, they came up with some pretty cool ideas.  Sometimes, I would then enlist the support of others in whatever response I cooked up, and it would exponentially magnify.  See my post from late September '10 and look at the "Butterfly Wall" as an example.  We took all your comments and with the help of my friends Dayna and Amanda, turned them into beautiful butterfly messages on the walls of Bella's room.

This became a practice, starting from the moment I had to regain my wits in the moments after Bella was born, when I was alone in the break room recovering from almost fainting in the operating room.  I figured that at the end of this big game of life, I would look back and see it all.  I figured that it would go better at the end if when I look back, I am pleased/proud of what I see in the man I was.  I do not want to feel regret.  One of my biggest fears in life is that I might lay on my deathbed and regret not doing something I could have done.  Similarly, when I see Bella and my own dad in heaven for the first time, I want to 'look them in the eye' and say, "I did the best I could," and I want to see them smile and reply, "Yes you did."

I also know and recognize that being inspired by other people's stories has been IMMENSELY important to me.  I just bought the Time magazine edition of their 100 most influential people of the year.  There are some pretty inspiring people out there doing some pretty inspiring things at each turn, and the only way others can be inspired is if their story is told.

Can you imagine where the world would be if Courtney Roth never blogged?  How many people have come to know God in a new and/or deeper way thanks to her choosing to keep of blog of Tripp's journey here on Earth?  How many THOUSANDS have mobilized into action in some way as a result of her blog?  The world has been made a better place because she took the time to share her story with it.

The Daughters of Harriet are this amazing quintet of music therapists who sing and lead chant circles at our conferences.  This past conference, they led a chant that went something like this, and I think it summarizes it all so well...

"I may not have all that the world needs,
but the world needs all that I have."

So, while I recoil in some ways and share less and less about life in the Ringgold clan, I recognize that we are all still here together.  It makes my heart feel really good to read that my words make a difference when a comment is written that indicates what a difference this blog has made for that reader.  It simply tickles me that 'strangers' can connect through this medium and interact... essentially feed and care for each other.  Share with one another.  Walk together.  Somehow, it makes the world bigger and smaller at the same time.

Eek.  I should have stopped babbling an HOUR ago and gone to bed!  LOL.  Thank you for (still) being here.  It is an honor and a privilege to walk with you.

God night.

P.S.  Having said alllllll that... we just enjoyed the most wonderful visit from my mom and stepdad.  My mom got to watch Ali dance in the school talent show in the dress she bought her, we visited some wineries, cruised Newport Harbor in a little Duffy Electric boat, worshipped together in our new church, visited with Ang's family, and ate entirely too much since Thursday night!  LOL.  Wouldn't trade it for the world, though.  Enjoy some pics!


  1. As long as you post the odd picture of the kids I don't mind how often you blog :p looks like you have been having some family fun x x

  2. wow! I am so glad you keep blogging while at the same time, keeping your family safer away from public spotlight. we don´t need to know everything you are doing, we just want to know you are doing OK. we have grown to love u and your family and Bella. How much I love that little girl, and how honored I feel to have witnessed her story and strength. Yes, we are a community, and I feel honored to be part of it. You are inspiring and yes, there are so many other inspirring stories out there that we may never know of. But for now, I choose to let you and your positive attitude inspire me. Thank you Tim. God bless you all.
    christiana (cyprus)

  3. Blogs like yours and Courtney's and Patrice's, have allowed my shaky faith to grow and strengthen. I am forever grateful to have met (virtually) Bella , Tripp and Jonah. God is so very big and you have helped me to see him. Thank you, always!

  4. i have never commented on this blog before but i look foward to reading it every monday morning. Please keep blogging about your faith and your outlook on life. Your post about prayer a few month ago changed how i view prayer. you blog encourges me to be a better person. THANK YOU and dont stop.

  5. Tim - What about when people are not doing the right things, but it's still 'the best they can do' and they know it, and are torn up inside, confused, upset. I'm thinking about my sister and all the very bad choices she's made since her divorce 5 years ago. Moving a man into her home with her 3 daughters immediately. A man with many problems, including alcohol. People are LUCKY if they can do the right thing and feel peaceful, UNLUCKY if they know they are doing the wrong thing and suffer with no peace. How can I help my sister? Can you help me help her? I am happy for you that you and your wonderful family have seemed to find a way to the light through the darkest wood. Thank you for the update and sharing your photos. The ones of Bella get me every time.

  6. Thank you for once again digging deep and sharing your perspective on life with us! You and Courtney Roth have both made an impact on my life even though I have never met you and chances are good that I will never meet either of you face to face. I may not be a part of the EB community in experience but I do feel like I am a part of it now through you and Courtney and I pray for you both and all of the EB babies (earthbound and angels) every single night. The things that you have been through and the perspective on life and faith that you have emerged with have given me strenghth and I believe have helped to make me a better person. People like you and her make the world a better place.
    Thank you for all you have shared!
    Kelley in MO

  7. your words have made a difference, to me and to all the people who have been fortunate enough to find your blog. I hope you are able to continue to share your wisdom...I think everyone I know would benefit from hearing your views on so many things :D

  8. Hi Tim. I think I'm addicted to your blog. We all go through life with different experiences but not all of us can put it in writing and inspire people like you do. I don't read your blog like Hello magazine, to know what you are wearing or Ali is eating. we love your family for what you went through and what you are now.
    Thank you again for sharing your story with us.

  9. An uninvited event did show up. I take it "one day at a time" and ask God to guide me. Today your sharing has helped me put a better light on things. I do have the ability to be blessed and grateful for the situation that I'm faced with. I do see that it was actually happening for me. It has made me closer to God and to my loved ones. Again Thank you. You help more than you know. Some of us have trouble putting it into words. Even if you don't get many comments, you should know you do make a difference. Please keep walking with us...

  10. Happy 3rd Birthday sweet Bella ♥ We are dedicating this "I refuse" day to you and all our EB angels. We REFUSE to live life like we don't CARE! We promise you and everyone effected by EB, we will fight for a cure.

    Love and Prayers to your Family,
    Rebecca Bair