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!

Sunday, April 22, 2012

April 22, 2012: Ali's Birthday Party...


Well, today was the big day.  We threw Ali's 6th birthday party at nearby Irvine Park, and this time sprung for one of their pavilions.  They're not cheap, but man, was it nice.  What a great place Irvine Park is.  So much to do... railroad, zoo, horse and pony rides, paddleboats, bikes, duck feeding, peacock watching, and a little birthday partying to boot!  4 years ago we rolled the dice and threw the party closer to Ali's actual birthday, April 11, which inevitably means it's like the last weekend before Easter, and the place is CRAMMED.  Also, it happened to be 102 degrees that day.  Not today.  It was perfect.  71ish with a light breeze.

We had 20 kids (babies included) with roughly the same number of adults on hand for the fun.  It was great; there was a crew from church, from school, family, and a few friends and their kids to top it off.  Hats off to grandma for helping to set up and clean up, and to grandpa for the cake to end all cakes.  Thanks to Sara for the photos, but the real hats off has to go to Angelique.  She has been working on this party for weeks, and it showed.  Let me tell you how awesome the mermaid theme was...

The Ocean Jello with JuJu fish swimming inside...

The pb&j sushi was cool, but the California Roll sushi made up of bread, cream cheese, carrots, and turkey were off the chart creative!

Here is the cake to end all cakes.  Ali custom ordered it from grandpa.  He's been taking cake making courses, and it shows!

Streamers and nets with Ali's colored-in-fish in the net...

Mer-Races... like a potato sack race, but tape the trash bags once around the waist, and then around the ankles to make a tail... girls heat, and boys heat...

mermaid pinata....

Daddy played the ukulele as we all sang happy birthday...

There were decorate-your-own cupcakes, and decorate-your-own mermaid and merman crowns...

A good time was had by all.

Yesterday, we took all the crust from the sandwiches, chopped it into crumbs, and today, fed them to the ducks for the rest of the afternoon.  (This is not a duck.  This is a Julian.  Figured a cute mug shot of him would be a nice ending point)

Life is good.

God night.

Sunday, April 15, 2012

April 15, 2012: Julian's Dedication...


Today was Julian's dedication at our church.  It was amazing.  Rev. Dr. Dennis Short, the minister who married us, dedicated Ali and Bella, and gave Bella's memorial, came to our church, First Christian Church of Orange, CA, to do the dedication.  It was really important to have "continuity of spiritual care" with our family, and particularly our children.  The best part?  We didn't even have to ask.  Our amazing Associate Pastor, Rev. Dr. Olivia Bryan Updegrove, automatically asked me if we'd want Dennis to do the ceremony as soon as we told her we wanted to schedule Julian's dedication.  How cool is that?  So, the ministers all played musical churches, and our interim minister, the AMAZING Rev. J. Dale Suggs, went and preached at the church where Dennis is interim pastor, Olivia lead worship for us, and Dennis led the dedication.

I just have to say how happy we are in this church family.  Our denomination is called Christian Church - Disciples of Christ, and our sister-denomination is United Church of Christ.  We are a progressive Christian church that is open and affirming to all who want to join.  Watching everyone work together to make today exactly what we envisioned... it was amazing.  Everyone was so accommodating!  I was telling this to one of the elders later in the day, and he put his hand on my shoulder and said, "Well, this is YOUR church!" As if this type of thing should occur.  Love that.

I also had the honor of preaching during the offertory and playing "Julian's Song" during the offertory.  I'd like to share what I spoke...

Show of hands:  How many of you have come to realize and know that you have been blessed with a certain God-given gift?

How many of you have ever looked around at someone else's gift... and wanted theirs? ;-) Be honest!

How many of you have invested time, energy, money, or other resources to nurture and develop your gift so you could truly make use of it in the world?

(to you blog reader) What you may not know is that Chapman University, where I got my music therapy degree, is a Disciples of Christ school, and as a D.O.C. student, I received a partial scholarship to help with the private school tuition fees.  While at Chapman, I learned about "Birth Songs."  You already know the impact Bella's song had on her from the moment she was born to the moment she died, but you may not know this little story about Julian...

When he was pulled outta mommy, he was a little mad.  I think the "C-section Surprise" would do that to any kid.  After all, there's no warning!  One minute you are lying there in a peaceful, warm, dark waterbed, and in the next, the roof opens up, the waterbed pops, and you get dragged out into who-knows-where... and it is BRIGHT and LOUD and COLD!  Screw that!  I'd be pissed, too! LOL.

Anyhow, by the time Julian hit the scale/APGAR table, he was in full pitching-a-fit mode.  So, I walked over to him, leaned over him, and started singing his song to him live... loudly.  It was playing on the CD in the O.R. but the CD player was all the way across the room at this point, and between the din of machines, and the O.R. team putting Ang back together, I could barely hear it myself.

Within a second of my big voice resonating in his little head, his eyes popped open WIDE, the locked with mine, and he instantly stopped crying.  The nurse got all choked up, and then I got all choked up.

The music worked.  Again.

This was my first 'birthday present' to Julian:  in a moment of complete chaos for him, I gave him something safe to latch onto... his own song...  the song he had been hearing every night for over a month before those docs so rudely interrupted his final moments in 'mommyspa.'

If it hadn't been for the financial gifts that were given by church members that helped pay my way through school, that little moment for Julian might not have gone exactly the same way.

Oh man... the best part?  After sharing this story, I sing Julian's song, and doesn't he immediately perk up and just GLOW at daddy from the second row!  I never took my eyes off him the whole song.  I got to sing his song to him at our church for his dedication.  That was such a special moment as well.  I just love our church.  I just love our faith.  Life is good.

God night.

P.S.  We took Ali to SeaWorld on Wednesday to celebrate her 6th birthday!  The big party isn't till the 22nd, but we had a BLAST there.  They have a deal right now where you pay once, and you go for the rest of 2012 for free!  Killer deal!  We had so much fun there, but I think getting completely soaked by some dolphin kids while playing with them took the cake.  Check out the pic of Ali showing off her new mermaid barbie to one of the dolphins... too cute!

Sunday, April 8, 2012

April 8, 2012: The First Easter...


Happy Easter!  Today is more than a happy Easter, it is also a sad Easter.  For those of you who didn't know her, baby Quinn Seymour went to heaven yesterday.  She was the third JEB baby to undergo BMT at the University of Minnesota, and despite overcoming so many obstacles along the way, she succumbed to a lethal form of pneumonia on Day +120 of transplant.  She was 2 days shy of 8 months old.

Her daddy, Marc writes an amazing caringbridge page.  Go there and send them some love, or on their facebook profile.

There is so much to say about today, Easter, and how it relates to Quinn, Marc, Bella, and me.  Let me do my best...

Today, at church, we heard, "He is risen!"...

... but what made today SO REAL for me - and I know for Marc - is that thanks to Jesus' sacrifice, and God's promise, "SHE is risen!" (when she = Bella or Quinn)

THIS is what our Easter Celebration is all about.  Up till today, for me, Easter was always like, "Yay, Jesus!  Good for you!  You went to heaven today!"

It never dawned on me that TODAY is the day that I stake my faith on.

TODAY is the day that gave me the strength to get up the day after Bella died.

TODAY IS THE DAY where the rubber meets the road.

TODAY is the day after for Marc, and it is Easter itself.

How amazing is that?

Marc lives his faith out on his sleeve like I do, and I know that for him, Quinn is risen, pain free, enjoying the endless beauty and bounty of God's love in heaven.  I imagine Bella and Tripp there waiting for her, saying, "Welcome back Quinny!  Great job down there!"

This does not remove the pain, but it transforms the experience, and for me, allows me to transcend any suffering.  I've said it before and I'll say it again, I am in pain, but I am not suffering.  Instead, I choose to  believe that this is all part of God's beautifully divine plan, and that when I am reunited with Him in my heavenly form, He might just let me take a peek of the view from up there...

He is risen.  She is risen.  Alleluia, Quinny!

God night.

Sunday, April 1, 2012

April 1, 2012: No Foolin'...


Sorry I didn't write like I said I would last week.  I was on a walking tour of downtown Salt Lake City, taking in the Mormon Temple after one of the most amazing tapas meals of my life with several good friends who are also music therapists.  Someone asked about the conference so here's a quick blurb...

Sunrise in SLC...

I serve as the vice president of the western region of the American Music Therapy Association.  As the VP my job is to run our regional conference in the spring for 2 years.  Last year, I hosted the conference aboard the Queen Mary in Long Beach.  Each year, we move the conference to a different state in our region.  Next year, we'll be in Tempe, AZ, and in 2014, we'll be in Portland, OR.  The conference is by music therapists, for music therapists.  We have two days of concurrent continuing education sessions, and several days before and after of continuing ed courses/workshops available.  We are required to earn 100 CEUs every 5 years to maintain our board certification, so the annual national conference in the fall and regional conference(s) in the spring serve as a great way for us to stay connected, recharge, and deepen our skills as professionals.

As conference chair, I have a local committee that is responsible for the real planning and execution of the conference.  This year there were two local co-chairs, a registration chair, marketing chair, entertainment chair, logistics chair, silent auction chair, PR chair, program chair, as well as continuing ed chair, each with their own committees.  There are A LOT of moving parts to conference, and ultimately, I am the one accountable for it all.  The way I looked at my job these past two years was to 1. throw a great conference full of great content and value for the attendees, but also to 2. plan and execute the conference in a way where there were 'no martyrs' and all the volunteers experienced growth and professional development, so 'they got while they gave.'  I also looked at how to make the process and product more efficient and profitable.  This year, we gave out over $6,000.00 in grants and awards to help our members with various research and initiatives in their communities, and that just felt GREAT.

It's been a L-O-N-G time since we did a conference in Salt Lake City, but we ended up with 170 participants, which was 20 more than we planned, so we beat our plan!  It was great to meet a bunch of new friends, and connect with old ones who live in different states.  It was incredibly intense, and I spent much of this past week just sleeping and decompressing.

Okay, that's enough about conference.  Monday I stayed and skied and it was AWESOME, even if it was snowing.  By the afternoon, we had 4 inches of fresh Utah powder and a mostly empty mountain to ski on.  It was unlike anything I've experienced.  I skied as a teenager in New England, and it was never like this.  I got the skiing bug again!

Last run of the day, and still in one piece!

Still, it's nice to be home and have the family back together again.  We were split up for some part of each of the past 4 weeks straight, and that gets tiring.  No trips till memorial day weekend I think, so that's nice.  Then, we get busy again.  Oh well.

Had a rough moment at work this week.  I saw my first "code blue" since Bella's, where  I saw somebody receiving chest compressions for the first time since Bella.  I saw the family member come running through the door and heard the sound of a heart breaking just like Ang's for the first time since then.  I saw the crowd of docs and nurses flooding in and out of the room for the first time since Bella.

It was rough.

I was outside crying within about two minutes.

There are details of that day that I have never told you, and this week, I relived the whole sequence with my spiritual advisor over the phone and finally spoke of the brutal details of the day for the first time ever.  I didn't realize that there were parts of that day I kept inside, given how much I write on the blog, but when I look back, there was only so much I could recount in one (or two on that day) blog post, given the state of physical, mental, emotional and spiritual exhaustion I was experiencing.  What I will say is that I am really grateful for the fact that I have worked on several grief retreats with my mom, because there are specific quotes and slides from the retreat that have served me well through my own journey.  Who knew that when I started serving on that retreat, it would be for my own benefit as well?

Just another case of God being able to see what you'll need in the future, and giving it to you in the present.  He can see it all, and I continue to choose that the view from "up there" is beautiful in its totality.  From down here, we can only see tiny, TINY fragments of the whole, so it's really not wise to try to make meaning out of anything we see from our lowly vantage point.  It seems to me that when I trust that his view is prettier than mine, things go better.  Hey, my faith is pragmatic, first and foremost.

Here's a dumb, but maybe effective analogy.  Many say "the Mona Lisa" is a great work of beauty and art.  However, if I only gave you a square inch of the painting to look at, would you be able to see its beauty?  Probably not.  you wouldn't have enough information to make a decision one way or another.  You would probably have a meaningless black or cream square of canvas.  However, can you imagine how willy it would be to make any sort of generalization about the picture it was from given how little you could see of it?

I like to think that the picture of my life is laid out all at once for God.  It's like a linear painting. He can see the entire sequence of events in an instant.  In that way, he can add a brush stroke here or a brush stroke there, and it makes the picture more beautiful.  It was like me completing my NICU music therapy training 3 months before landing in one with Bella... like writing "His Love is Everlasting" in 1998, and not singing it till 2005 in an ICU for a church member, and now in 2012 singing it almost weekly to people moving closer and closer to their last breath.

God's brush strokes.

They can be a thing of beauty, when I have the courage and faith to look for them.

God night.