June 12, 2011: Grateful.

Heaveno!

Thank you, God.

Thank you for giving us eyes to see your beauty, ears to hear your beauty, noses to smell your beauty, skin to feel your beauty, and faith to know it all comes from you in the first place.

Today, we got to spend the day with Lonni, Jay, Janie, and Aaron Mooreland, the founders of and our partners in PUCK.  They are on vacation out here in southern California, about 35 minutes from us, so we met them at their vacation spot and spent the day eating, playing in the pool, and brainstorming about PUCK's continued growth and development.  The spot they vacation at overlooks the Pacific, a giant gorge, and a pretty awesome golf course.  While we sat out on their deck, I could look out over the endless ocean, listen to hawks flying to within what seemed arms reach (not really, but really close), smell the salt water in the air, and feel the cool ocean breeze caress my face.  It was total sensory beauty.

It was God - everywhere.

What feels like forever ago, shortly after when Bella was born, I came up with this idea (read: mental survival tactic) that this whole journey was somehow planned by God, Bella, and us way beforehand.  I considered that perhaps in each situation that was unfolding, there was the hand of God, reaching out with a cup of water along the marathon route for me.  All I had to do was flip on my "Providence Goggles" and look through THAT lens at all the events unfolding in front of me, and I would AUTOMATICALLY see God.  That idea lead to the "Providence Story of the Day," on this blog, and after 3 months of those accounts, it lead to me writing and self-publishing Bella's Blessings: a Humble Story of Providence.  It was not some lofty concept conceived while meditating under a tree.  It came sitting in front of an isolette in a NICU that housed our 3 day old baby we couldn't touch, whose skin was blistering, peeling, and falling off right in front of our eyes.

Day after day, I donned my goggles, essentially putting my faith to the test, and day after day, those goggles didn't disappoint.  It seems like forever ago.  So many battles (with the enemy of faith: fear) have been fought since that day in the NICU.  So many times, the urge to let the cold black vice of fear crush my heart like a grape has attempted to sneak in, sometimes through my thoughts, sometimes through my feelings.  That faith was an unrelenting search beam, constantly snuffing out the cold hand when it approached.  It was a survival tactic that I never thought would afford me the peace and happiness I experienced today.  I just wore those goggles to keep me functioning one moment at a time.

Today, the Moorelands and Ringgolds found themselves again at table, giving thanks for everything that has led us to this moment in time.  For despite all those prior moments - including the loss of both our daughters - just for today, all was right with the world.  Even our dear friend Sara Cooper came down, watched the kids, and took pictures for us of our PUCK website.  She is amazing.  We go to bed tonight exhausted from fun in the sun and the pool and a little too pink, but we are grateful because tomorrow morning, there are no rounds for us to be in, and there is no bandage change looming over head.  There are no special-multiple-medication-and-supplement bottles to mix up to be administered through a feeding tube, and no errands to be made where questions of "WHAT HAPPENED (to your child)???" have to be fielded.  In the caregiver grief journey, part of the grief journey is dealing with the guilt of feeling relief over the absence of those incredible challenges so many other brave families will face tomorrow.

Sometimes, it's okay to stop.  Sometimes, it's okay to take a break.  Sometimes, it's okay to feel relieved without feeling guilty.  Sometimes, it's okay to just feel really good and happy.

Today was one of those times.

God night.

Tonight, I give you the first barrage of pics from Ali and Bella's first night at RMH unpacking all the toys daddy won for them at BINGO his first night in town.  I think that's Bella taking a header into her new fire truck in the opening pic...

June 9, 2011: Tired...

Heaveno!

Good news, we went to see the OB today and Ang is measuring exactly normal and Julian's heartbeat was strong!

Last night, we had another flyer night fundraiser for PUCK.  Once a week for the 4 weeks following Bella's Bash, we set up local flyer nights where if you bring in our flyer, 15-20% of your bill goes to PUCK.  We anticipated a bigger turnout at Bella's Bash, so in turn, hoped for bigger turnouts at these flyer nights, but some tried and true supporters have shown up every time:  Ang's parents, and Sara Cooper and her family (even if only to pick up take out).  Thank you, grandma and grandpa for driving up from Huntington Beach through rush hour traffic to share a meal with us each of these past 3 weeks.  You have always been there for us in so many ways since babysitting Ali the day Bella was born.  And thank you, Sara, your support has been unmatched.  We are constantly gifted by your creativity, passion, persistence, and presence in our lives.

In addition to Bella's Bash, the four flyer nights, and Time to Fly, I am also raising money for the charity golf tournament I am playing in two days after Time to Fly benefitting the Ronald McDonald House in Minneapolis we called home while up there.  That facility is absolutely magical.  I've told you about the chimes they sent on the 6 month anniversary of Bella's death... did I tell you about the birthday card they sent her which arrived exactly on her birthday, May 27th?  They even have snail mail figured out to the day half way across the country!  That is how thoughtful they are as an organization.  I posted a chip in, and if you have been able to resist my 47,682,396 other requests for money, here's another!  LOL.

http://www.timringgold.chipin.com

I think after June, we don't have any more fundraisers planned for a bit.  We actually have a lot of internal organizational planning to be doing, so that will most likely fill the remainder of the summer.  Come a year from now, we want people to say, "Wow, that PUCK, they have their s%#t together!"  Sorry for the colorful language, but the non-profit sector is replete with organizations run like the way we've been running these past 6 months... no plan, just a giant heart and will to do good.  The real stars in the non-profit world these days (see charity:water as a case study) have really taken themselves seriously as a brand, bringing entrepreneurialism and the venture capitalism philosophy into the organizational culture of the charity.  This is what philanthropists, foundations, and major gift donors are looking for these days, and as the Director, this is what I see as necessary for PUCK to accomplish its goals of turning EB from incurable to curable over the next ten years.

We just figure that if we were to mobilize a small army of people behind the idea of being part of curing a devastating incurable childhood disease, we'd leave the planet better than we found it.

There are so many important causes doing vital work in the world, and luckily we live in the richest, most generous country on the planet; a place where almost a billion dollars A DAY is donated to charity.  (Donations have topped $300 billion the last 4 years despite the economy).  Folks, I can't even begin to pretend to wrap my little brain around that number.  We con ourselves individually and collectively that money is scarce, that it is hard to come by, that people are selfish and greedy, that there isn't enough.  I know that the bubble popped a couple of years ago and the inflated dollar withered back to where it more accurately belonged, and I know that many of us are feeling the sting of that correction.  Nonetheless, we still find a way as a country to circulate $300 BILLION of our own volition?  That is inspiring to me, I don't know about you.  Generosity is in our DNA.

Be generous.  You benefit twice, your recipient benefits once.  Happiness is increased THREE FOLD.  Why twice for you?  You experience the good feeling in your heart the moment you decide to be generous, then you feel it again when you experience the deed in real time.  That's why it's better to give than receive; when you receive, you only get to experience the moment in reality, whereas your benefactor got to experience it in the moment they chose to do it, and even perhaps again during the planning of whatever the gift was, and again when they gave it to you.  (That also assumes you aren't someone who gets all confronted when given to and bestowed generosity upon.  If that applies to you, then in your case, it's WAY better to give! LOL)

Thank you for the opportunity for me to share all of this, and to know there are people who care to read it.  Your generosity of your time, attention, prayers, thoughts, intentions, cards, comments, gifts, money, and love have been simply too large to reciprocate.  We receive your gifts with gratitude, love, and respect.  Thank you.  Have a great weekend, and see you Sunday.

God night.

Well, here we go... the last pictures I took before leaving for MN almost exactly 1 year ago to the day...

June 7, 2011: Kyle's new life begins today...

Heaveno!

Thanks, Karen, for reminding me to write about Kyle tonight!  The next patient in the U of M BMT trial received his transplant today!  His name is Kyle Hicks.  He is 20 years old.  He is from Wichita, KS, a community college student, and in most ways is as typical a young guy as he can be... except for this thing... yeah, you all know, RDEB.  He only weighs 51 pounds and is is just over four feet tall.

Well today, as his mom says, is the first day of his new life.  Apparently transplant went phenomenally with Kyle sleeping a lot of the day.  Dr. Wagner changed the chemotherapy work-up for Kyle, and so far it has really lowered the side effects, which is GREAT!  Just hearing about transplant brings back some serious trauma, but to know that the doctors are still going at this a year later, and improving as they go, well, it makes the journey we went on not in vain.  (would that be vainless?  Never heard that one before...)

You can follow Kyle's journey by CLICKING HERE.

Here is a photo gallery of the ride home on Sunday.  It was weird driving back, since I didn't drive that way home in the fall.  Check out the sign that warns drowsy drivers to pull over... is that because caffeine is not exactly a popular item in Utah?

I am still so grateful we took the opportunity to travel the country and meet as many of you all as we could.  Meeting Jonah and Tripp was also so important to us.  Now that we are back in the rat race, I can't see pulling a trip like that off as easily as it seemed then.  What's funny about that is the fact that I could even plan a cross country trip, two memorials and three gatherings spanning 15 states over 7 days at that point!  It befuddles me now looking back.  I could barely get through the day.  I have NO memory of my sister and mom and mother in law packing our Ronald McDonald House apartment.  What was I doing?  Planning the trip I guess.  This is one of those times when the "Footprints in the Sand" story seems to fit really well.  It MUST have been God carrying me, cuz it wasn't me.

I'd also like to take a minute to thank Laurie Steiner from The Butterfly Fund for helping me reach my goal for the Children's Cancer Research Fund "Time to Fly" 5K run I am running in two weeks!  Laurie has been a staunch advocate for EB research, advocacy, and patient/family support and holds "The Buttefly Ball" in the fall up in northern California.  She donated cookbooks and a beautiful bamboo dress for Bella's Birthday Bash, and today, she made another generous contribution to our cause.  With so many worthy causes out there, and times still being tight on the family purse, I am continually amazed and grateful for the generosity of so many.  It inspires me to keep "shouting  from the rooftops," as devoted blog reader Jane would say all the way from Vancouver!  You are all so wonderful.

I'd like to invite you all to do something cool tonight.  If you have a blog, a website, a business, ANYTHING that you are passionate about... share it with us!  This is a community.  We genuinely know and care about each other.  Like Laurie says on her page, we all have so many choices when choosing who we do business with, why not support each other?

Okay, gotta run.  Got a meeting with Ang to start working on our portion of PUCK's strategic plan!  I took Ali to the pool before dinner and all I want to do is hit the sack, but in order for any movement, concept, business, entity to reach critical mass, a lot of effort needs to be expended at the onset.  That's where we are right now... hanging on that giant lever trying to get the boulder rolling.  Thanks for hangin' on with us!  With all our weight together, we get that ball rolling MUCH QUICKER than if Ang and I were hanging alone!

God night.

June 5, 2011: Back Home Safely...

Heaveno!

Happy Birthday, Jim Thomas!  Wow, I remember saying that on the blog 2 years ago!

Well, happy to be home in my PJs in my chair in our bedroom dropping this quick note to you all.  Leave it to me to say I'll start blogging Sun, Tue, and Thu, and I walk in the door from my meeting in Salt Lake City at 10:50pm on Sunday night!  DOH!  It's okay.  I can't even begin to express how happy Ang and I were to see all your comments!  Thank you so much!  It was so nice to hear from so many of our old friends as well as hear from some first time commenters, but long time readers!  Thank you for delurking!  That can take some guts!  We LOVE hearing from you, even if it is your first time commenting; it's extra cool, because you really have been with us all along, and your presence, prayers, thoughts, wishes, intentions, and attention are GREATLY appreciated.

It felt like I had gone away to camp or school for a while and just got back and heard from a bunch of close friends I hadn't talked to in a while!  All you "regulars" from back when it was open commenting, it was SO nice to hear your words and see your names again.  It feels GREAT being connected with you again!

Salt Lake City was ALL business.  I left here at 5am on Friday morning, and arrived at 4:30pm and was in a meeting from right then till about 10 that night, but stayed up to balance a budget with our treasurer till midnight.  Then, Sat 8:30am to 11pm, then Sunday 8am to noon.  In the car by 1pm and home by 11pm.  Woof!  It really was TOTALLY worth it.  I am the Vice President of our regional music therapy professional association, and to serve on that board with so many colleagues I absolutely respect and look up to is amazing.  I get to be a part of growing our field through leadership and development, and that is SUCH an honor.  I love serving my community this way.

The drive was great fun as I picked up 2 of my colleagues along the way!  I'll post a photo album of my travel pics for Tuesday night, okay?

Ang and Ali had a BLAST at our friends' birthday party for their daughter yesterday.  It was an all day affair, and consequently, Ali slept in till 10am this morning, which is LATE for her (and us!)  It gave Ang a chance to start the day peacefully and quietly.  Since Ali's bathing suit has been getting worked from all the activity lately, Ang saw a SHOPPORTUNITY and got Ali a new bathing suit and they took it for a test swim this afternoon!  Ali is such a motivated swimmer right now!  It is really exciting to watch and support.  She is just such a blast.

Alright, I gotta get some much needed sleep!  Thank you all again for all the love, please keep the comments coming; don't worry about getting it "right", just get it up here! LOL.

God night.

June 2, 2011: Deja Vu

Heaveno!

Tomorrow morning, I get in my minivan at roughly the same hour, and drive the exact same route on almost the same day as last year when I embarked for Minnesota.  I think it was June 8 last year.  The first day, I drove to Salt Lake City and stayed at the Red Lion Downtown.  I'm driving there again tomorrow.  This time, I'm picking up two of my colleagues along the way, but I am choosing to drive in order to experience the beauty of Utah just one more time.  Next spring's regional music therapy conference is in SLC, so last year, I combined a site visit with my trip to MN to kill two birds with one stone!  This year, we have are annual mid-year meeting at the location of the next conference, so here we go again to SLC!  The drive up I-15 from St. George, UT is just beautiful.  It's just blazing through the rest of the desert of CA, NV, and AZ to get there that one has to get through first!

Today, I have been feeling some pangs of regret, like wishing it were this time last year and somehow, some way, things could have gone differently.  I miss Bella so much, it just kills me sometimes. Usually about once a day.  I just look at her pictures and just apologize.  "I know, I know," I tell myself, "You made the best decision you could, given all the information you had at the time..."  Sometimes, that line just feels like BS.  Sometimes, I don't want to be strong.  Sometimes, I don't want to do the requisite cognitive reframing in the moment.  Sometimes, I just want to feel BAD about the whole thing.

As Julian approaches 28 weeks tomorrow, I know that when he arrives, so much will change yet again, and the presence of a baby will snap us into the present on a moment by moment basis.  Still, I am afraid to leave Bella behind in the bustle.

One other thing that is really wrenching at me is my photo collection of Bella.  At the end of each post, I put up a picture from roughly the same time last year, just to keep the memory alive.  This was really the "sweet spot" of Bella in her development.  She was just so serene and sweet this time last year.  Come the end of this month, I will be out of pictures of her living and smiling and connecting with those eyes.  In my iPhoto program, I can filter my pics by "Last 12 months" and I usually pick the best picture of Bella from that time.  This habit has been very therapeutic for me with this blog since she died.  I feel like I'm about to lose her all over again, in just another little way.

In other news...

I had the honor and privilege of being interviewed yesterday on Deborah Wilson's blogtalk radio show "Angels and Prosperity." I gotta learn to tell stories with a little more brevity!  LOL.  I really went deep with some of my stories, because Deborah left the flow really open, so off we went!  It felt so great getting to share how music has been the net that has held first me, then others, then finally Bella, throughout some of the toughest of life and death moments.  I am so grateful to receive music and to give music; it is such an amazing gift.  Deborah really encouraged me to share how that thread of music has woven throughout my adult life to guide me to the best version of me I can be.  Thank you, Deborah!  Click on the link above to listen!

I have to go now.  I still have to pack, it's 10:15, and I have to be up at 4.

Two quick things...

I'm going to start posting on Sun Tue Thur again.

Also, I re-opened the commenting to anyone.  What made this blog worth valuable to Ang and me was the connection BACK from you all through the comments.  I failed to maintain my own self control on my own blog a couple of months back and lashed out at a blog follower.  I never should have done that.  Ever.  If that person is still reading my blog,  I apologize.  Please forgive me.  I learned a valuable lesson.  I may write this blog, but Angelique also reads it daily and we both are truly touched by all of your wonderful thoughts, wishes, and comments as we seek to honor Bella by making the path for all other kids with EB (and their parents) easier through funding research that hopefully leads to a cure.  By recoiling and building up walls to protect my ego and my feelings, I pushed all of you away.  I am sorry for doing that.

Please, if you haven't in a while, drop us a line and let us know how YOU are doing and WHERE you are.  That contributed SO MUCH to us knowing you and where you play this game called life.

Much love and respect,

God night.