Sunday, October 30, 2011: T'was the night before Halloween...

Heaveno!

... and all through the house...



... there was candy already from the church Halloween party today!  LOL.  The party fun for Ali has been non-stop since Friday.  Oh, to be 5 (and a half) again.  Ali's after school program had a costume party Friday afternoon, one of our new friends from our new church invited us to their house yesterday for a big afternoon Halloween party, and today, the church children's program hosted a big party as well.



Party Foul...


I remember when Halloween was only one day long...

I sound like an old man!  I remember when...  uphill both ways... barefoot... in the snow...

only one day a year for Halloween!  LOL



Look at these 21st century men!  LOL

Church was good today.  After Bella's one year anniversary, I haven't cried in church.  That is a welcome relief.  I wanna feel good in church!  Although, I did have a moment today; Ali was drawing on one of the concern/celebrations cards, and after she left for her "Worship and Wonder" class, I opened the card up, and it read:

GOD

JESUS

BELLA

Just like that.  Angelique later told me that Ali asked her how to spell God and Jesus, but didn't say anything more about it to her.  I didn't get a chance to ask Ali about it later, but it was sweet to see Bella on Ali's mind while she's at church, too.



On Saturday, Ali and Julian were hanging with me in our bed while mommy was in the rocker, and I really noticed the size difference between Ali and Julian... obviously a bigger size gap than from Ali to Bella when she was born.  The moment caused me to pause and try to imagine Bella right there in the middle of them, hanging out in bed with us.

I never wanted 3 kids (didn't want Ang and me to be outnumbered!) but in that moment, what I would have given to have had all 3 of our kids together.  Then, I realized I'm going to have to wait till not only I'm in heaven, but for Ali and Julian to get there as well before that moment can occur.  That feels like an eternity from now.  However, I really do believe that in that moment, it won't have felt like anything more than a blink of an eye.  I remind myself that as a linear construct, time is totally made up.  Our experience of time is totally subjective and nonlinear.  You know the drill, time flies when you're having fun... and it drags when you're bored... ever been in a traumatic event?  Then it r-e-a-l-l-y slows down.

I can't recall if I've ever rambled about my Bliss Theory of Time before.  If so, it was a while ago.  It states that time occurs at a rate equal to the bliss you are experiencing at any given moment.  Just a fancy way of restating what I said above... sounds nerdy though, don't it? ;-)  LOL... sorry teachers... couldn't resist!  Seriously though, what's key to this is not the bell curve of the bliss/time continuum, it's the long tails on either end that make me ponder.

If time speeds up when you are experiencing bliss, and heaven is the ultimate state of bliss, won't the eternity of heaven be experienced in an instant?

If time slows relative to suffering, and the ultimate level of suffering is hell, wouldn't the eternity of hell really equal being frozen 'in time' in your suffering?  To me, this matches our more linear notion of eternity.

What I can't reconcile with all this yet is the phenomenon ultra performance athletes and artists call "the zone."  In the zone, awareness hits a heightened level, and it occurs like time slows down, but I submit that time is not slowing due to the performer's state of suffering.  It's quite the opposite.  So, once again, we uncover two truths.

The biggest pitfall of whether there can even be truth is the presumption that there can be only one.

For example, in chemistry, how can like attract like and opposites attract?

How can I have sadness and joy in my heart at the same time over the death of Bella and the life of Julian?

It's why the nature vs. nurture argument is fundamentally flawed.  It presumes only one can be the truth.  We know now through research in genetics and behavioral sciences that it can often be the combination of the two that leads to all sorts of dis-ease like diabetes, addiction, and cancer.  Two truths.

Nature  (genetics)

and

Nurture  (environment + behavior)

I shall now crawl back out of the rabbit hole.  ;-)

***



Thanks again to all who participated in International EB Awareness Week!  We were really thrilled with how much attention EB got last week.  Our new and improve PUCK website had over 3,000 unique page views by Friday.  We had over 300 people text TRIPP or BELLA to 50555 and donate $10 each time to the U of M EB Research team as well.  I saw my poster shared over 60 times on facebook, and this video got A TON of exposure as well... something like 2,400 views last week!



Here's another great one you may have seen that got a lot of exposure:



There are just so many good people out there bringing EB to light.  Thank YOU for doing your part.  It takes a lot of swings with a pick to split a boulder, and the first hundred or so may look like they're not accomplishing anything, but every single swing was needed to make the one that ultimately splits the boulder possible, right?  And so it is with us.  EB needs each and every one of us just taking one small step past what we think is comfortable or even possible.

One of our values on the PUCK website is Vision.  This is what we say about Vision:

"We recognize that the only pathway to discovery is through what is currently "impossible" or "unattainable." We are comfortable facing the impossible, because it means we are pointed in the right direction; the direction toward discovery."

This is not always an easy philosophy to live, but it's made possible by the value we place right above it on the site:

Faith.

We tone it down a little in the verbiage in how we describe faith, but make no mistake, our trust in God is that when we work for Him, we are working for the greater good of all, and not ourselves.  This is a life worth living, a game worth playing.  This is the gift of faith.  It grants vision.  Vision grants leadership, leadership inspires action, and action produces change.

It all starts with Faith.

Lastly, thank you all who shared "through the looking glass" your perceptions on what is present in our marriage that keeps us part of the 5%... when you're in it, the view is different, so thank you for showing us a more complete picture of ourselves!

God night.

Ironic that I found this photo tonight after writing what I wrote...

Thursday, October 27, 2011: EB Awareness Week Part 3...

Heaveno!

I had a profound coaching call (as the coachee) yesterday that reminded me of some pretty amazing things about this game called life, and I want to touch on one or two of them tonight.

The first one is this.

The impact of a child with special needs (in this case EB) on a marriage is crushing.  The statistics are like only 1 in 20 marriages survive.  Said another way, 95% end in divorce or separation.  This was revealed to Ang and I shortly after Bella was born by a loving, concerned fellow church member who sat us down with our pastor to ask how the marriage was doing.  I knew the statistics were bad, but I didn't realize they were that bad.

In that conversation, Angelique and I made a decision that we were part of that 5%.  However, it is easy to see why the numbers are the way they are:

***

EB moves into your home and takes over.

There is the medicine cabinet on the kitchen counter for the half dozen to dozen medications and supplements that must be added to the child's diet.

There is the treatment table, whatever that ends up being, where dressing changes take place.  Dressing changes could be required daily or every other day,  and they can take from 2-8 hours.

The bathtub turns into a torture chamber.  Period.  Even if the child can tolerate a bath, the smell of bleach or vinegar added to the bath to attempt to kill off bacteria permeates everything.

The cases of wound care items turn some part of the house into a medical storage facility.  

The child's toys all have to be soft.

The child's clothes can't have any applique, embroidery, zippers, or anything hard, scratchy, rough, or sharp.

I remember one of the first nights Bella came home from the NICU, I got up in the middle of the night to go to the bathroom.  As I walked half asleep, all dazed, to the bathroom, a single blue night light emanated a dim, blue haze across Ang's vanity, which was COVERED in medicines and bandages.  In that half asleep moment, I thought I was in a MASH unit from the army hospital.

All social outings must be considered from a medical safety lens, and fun and recreation take a back seat to safety and security.


Then, EB moves into your heart and takes over.

You grieve the loss of the future you thought your child had, and the future you thought you had with your child.

You learn to turn off your heart and objectify your child when doing bandage changes.  You must become a wound care EXPERT to keep infections at bay, so when your baby is on the dressings changing table (not the diaper changing table), your heart is blindfolded so all you see is a hand, an elbow, a foot, a knee, a fingernail (or lack there of) until you literally put your child back together again with bandages that can cost $10,000.00 a month - EVERY MONTH - to supply if insurance won't cover them... and they often only cover a FRACTION of what's needed.

You learn to ignore all the stares, and dumb comments you get every.single.time. you walk in public with your child.

You try to forgive yourself for being short, frustrated, or annoyed with your "other kid(s)" when their comparatively trivial problems cause them to whine (appropriately) about them.

You try to remember your spouse is the love of your life, and not your medical colleague.

You try not to blame yourself for your child having EB.  You invent any and every positive, inspiring, enlightened, faithful context you can to keep you from thinking you did this to your kid... unintentional and unknowingly aside.

***

Now, having said all that, there are the 5% that withstand the tide of circumstance and soldier on together, despite the odds.  Why?  What are the key ingredients present in the 5% that are missing in the 95%?  It's not that the 95% are doing something wrong and the 5% are doing something right.  I think it is that the 5% are doing several things that the 95% aren't, the presence of which would change the game for them.  You all know by now that we have a couple of equations for living in this house, like E+R=O,  and the 3 F's (Friends, Family, and Faith), but I am curious.  What do you see?  As an outsider, what elements are present here that are missing in families you know that have split?  A dear friend of mine, and phenomenal Traditional Chinese Medicine practitioner, Cristo D'Arcy and I want to begin to serve this community, and the first thing we though of was sharing/teaching the elements of a tragedy-proof family.  However, in order to teach it, we have to articulate the big/crucial elements first.

This is where you can help.

Please comment on what you see as being the biggest elements present in our marriage (holy cow this is vulnerable) that would benefit struggling couples.  This feedback will help us tremendously as Ang and I are in the middle of this whole thing.  There is a limit to our ability to reflect and observe ourselves objectively.  Thank you for your help.  Please be respectful on this; we're not fishing for compliments or critiques.  We are looking for something very specific here.  What elements are present that you observe that seem to allow us to withstand breaking apart from the enormous stress our family has been through over the past 2 and a half years?

Said another way, what would you teach a struggling couple based on what you've observed us practicing/being/implementing?

Thanks for being our partners in eventually moving the number from 5% to 6%, then 7%, then 10%, etc.

***

I said there were a couple, but I feel like I went on for too long to talk about anything else tonight.  I do want to close by thanking all of you that posted my poster on your fb pages! Thank you to all of you that have dug in again and texted BELLA (or TRIPP) to 50555 this week.  Collectively, we've raised just about $3,000 THIS WEEK ... ten bucks at a time!  THAT is cool, because it shows just how many people are getting involved in taking action for a cure for EB!  There are so many ways to take action, and each and every way is VITAL.  I highlight SIX WAYS you can be a part of the cure on the PUCK website HERE.  Feel free to check it out and pick one (two, or four;)) way that most resonates with you!

If you haven't yet, in honor of EB Awareness Week, would you be willing to share my photo above on your facebook page with the following caption?  (or feel free to write your own)

"Meet Tim Ringgold.  I read his blog.  He lost his daughter Bella to perhaps the worst disease you've never heard of: Epidermolysis Bullosa, or EB.  In honor of International EB Awareness Week, I'm doing my part to help be a part of the cure.  Please go to www.puckfund.org to learn more about how you can, too.  Thank you."

To download the photo, if you're on a PC, just right click on it (I think that's what you do), if you're on a mac, hit CTRL+CLICK and you can download it wherever you want on your computer, then upload it on your wall and tag me.  (P.S. If you live outside the U.S. the texting won't work, so just ask people to go to the site and they can donate $10 on the website if they are so moved.)


Thanks!


Despite ALL the circumstances, we remain blessed.

God night.

October 25: EB Awareness Week, post 2...

Heaveno!

Lord, with so many phenomenal people sharing so many phenomenal ideas, memories, and stories this week, what would you have me share tonight?  I feel like I am preaching to the converted about EB Awareness Week.

Perhaps you could ask them to share about EB with their friends and family.

That's a good idea, God.  

I am full of them.  You just need to ask more often.  ;-)

...

And so we begin.

My friends, in honor of EB Awareness Week, would you be willing to share my photo above on your facebook page with the following caption?  (or feel free to write your own)

"Meet Tim Ringgold.  I read his blog.  He lost his daughter Bella to perhaps the worst disease you've never heard of: Epidermolysis Bullosa, or EB.  In honor of International EB Awareness Week, I'm doing my part to help be a part of the cure.  Please go to www.puckfund.org to learn more about how you can, too.  Thank you."

To download the photo, if you're on a PC, just right click on it (I think that's what you do), if you're on a mac, hit CTRL+CLICK and you can download it wherever you want on your computer, then upload it on your wall and tag me.  (P.S. If you live outside the U.S. the texting won't work, so just ask people to go to the site and they can donate $10 on the website if they are so moved.)

Thank you.  It takes an army to get enough support behind a rare disease to convert it from incurable to curable.

If you haven't been over to see the new and improved website, CHECK IT OUT!  Ryan has done such a fabulous job on it.  If you haven't read the success stories, you gotta read 'em.  They are what keep Ang and me going on this tireless crusade.  Also, please sign up on our mailing list!  We have more planned for the site, it's a work in progress, but we are really proud of where it's at to date.

Meanwhile, gotta tell you a cute story from life on the home front!

Yesterday was Julian's 8-week check up.  He is pretty much exactly 50th percentile in height weight and head.  When Ali went to her 8-week check up, our doctor gave us "the magic piece of paper."  This was a best practices hand-out on how to get your child to sleep through the night.  Well, no joke, THAT NIGHT, she slept through the night AND NEVER LOOKED BACK.  We call it the magic piece of paper of course because all Dr. Bindra had to do was hand it to us and it worked!  

(Sidebar:  Little did we know at the time that Dr. Bindra does magic tricks for his patients when they get old enough to appreciate them!  Seriously.  Total coincidence.)

It didn't work with Bella, but we blamed EB on that one in order to keep the mojo of the magic paper intact.  So, last night, we waved the magic paper over him, sang some incantations... just kidding... and MOVED HIM INTO ALI'S ROOM!  woohoo!  Ali is so happy about this because she was feeling really left out with the three of us in one room and her alone in hers.  She also sleeps like the dead, so he doesn't wake her.

Well, he did wake up last night for his late night bottle, but on each occasion that we put him down drowsy in his crib, he feel asleep on his own!  YIPPEE!  Progress!  We have been laying him in his crib a lot leading up to this, and playing his mobile for him (which HE LOVES), so his crib is not new to him.  His mobile is the same model (with dinosaurs instead of princesses) as the mobile we had over Bella's wound care station, and Julian is as mesmerized as Bella was by it.  It tugs on my heart every single time I wind it up, but it makes him so happy, so of course it's just one of the million things you deal with.

I think of it like a boxer.   A boxer can take up to 1,000 punches in a fight.  I'm a boxer fighting through my grief, taking life head on despite it.  So, every day, life throws its punches at me, and some I dodge, while others I see coming and know I just have to take.  Sometimes, life knocks me down to the mat, but I reach up, and my friends, family, and faith help me back to my feet, and I keep at it, and I never let the ref count to TEN!  before I am back standing.

Life can swing hard, and I'm not as graceful as some at going rounds with it.  Do you know who I admire?  Patrice Williams, Courtney Roth, and Jennifer Edling.  They continue to handle EB every day with such grace, gratitude, and faith.  I have a t-shirt with all four of our kids on the back, and I am so proud to be among them in this EB journey.  I don't know where I'd be without them.  They have inspired me to be a better parent, and a better blogger, and by doing so, we here have all been able to participate in this journey in this way we have.

It has been good, and I thank them each for being a positive influence on so many, myself included.  Thank you, ladies!  Keep up the amazing work.

Thank you to all of you that have already shared, many on multiple occasions, about us in the EB community.  We can't do this without you, so thank you again.

See you Thursday.

God night.

October 23, 2011: Happy EB Awareness Week!

Heaveno!

Well, here we are!

This time last year, we were holed up in a hotel in Louisville, KY, and EB Awareness Week was gonna have to be managed by someone else. ;-)  I might not have even thought about it last year, as I was so focused on trying to set up EB Gatherings and Memorials while driving around the country with a 4.5 year old.  I was really hoping for lots of people to come to each gathering, and there was some resistance, even a little backlash (one person accused me of emotional blackmail) for challenging people to come out from the internet vail and mourn with us.  As I look back now, I realize that part of it was... and this is gonna sound funny... I just needed a hug... I mean a lotta hugs.  There was one thing that this glorious medium cannot replace, and that is the safety I feel when just for a split second, I hug someone, and I can let me guard down - even for a second.  I had been being so strong for so long, I just wanted to collapse a little at a time into some hugs.  It's funny.  I could not have articulated that, I don't think, last year (who knows, maybe I did and I don't remember).  When I was reading the comments and my post from this day in 2010, I realized that I just wanted to meet, hug, and say thank you personally to the people that literally held us up through so much for so long, and I will never forget those EB gatherings.  THAT is LIVING.  Coming together in such a meaningful way to share a meal, a word, a prayer, a hug, and a song.  Sounds almost like church.



Anyhow, soo much to catch you up on.  In anticipation of EB Awareness Week this year, we have been hard at work overhauling the PUCK website.  The basic design is the same, but we reworked just about every single page within the site to reflect PUCK's new focus on one disease at a time.  Many thanks to the entire team at CCRF, but in particular, the He-Man Ninja himself, Mr. Ryan Durry: IT Master.  Ryan has been working with me probably for the better part of 3 months to revamp the site, and while we have even more to tinker with, we are really, really happy with the renovation.  Thank you, Ryan!

So.... go on over, and while you're there, please sign up for our mailing list so I can send you all sorts of inspirational emails on the amazing work happening at the U of M!  CLICK HERE for the new site!  Seriously though.  We are really proud of the site.  You can learn a lot about the cutting edge the team in Minnesota are doing research on, and find 6 different ways to help in the journey to cure EB!





In other news, I want to thank Sara Cooper and the entire Team Bella who walked in Bella's honor for a second straight year at the CHOC Walk at Disneyland last Sunday morning.  We would have been there this year except it was Ali's big day singing at church and leading worship with the other kids, and they had been rehearsing for it for weeks.  If Children's worship is on the same Sunday next year, I'm really going to be in a pickle!  Anyhow, I just want to say thanks, you guys, for sporting the fabulous socks, carrying the poster, and remembering our little girl.



Lastly, Julian just gets sweeter and sweeter, and each day, a little more joy fills my heart.  I had turned off the "son" feelings after we learned Bella was a girl, because we weren't planning on any more kids.  Now, that valve is slowly and steadily opening up the more J-Man's personality starts to emerge.  I am smitten.



Grandma happily gives Julian his bottle...



while Lucy sits and looks on all dejected....

Tomorrow is his 8 week check up.  At Ali's 8 week check up, her doctor gave us "the magic piece of paper."  This was the timeline for when she might sleep through the night.  Well, sure enough, she slept through the night THAT VERY NIGHT, so we now refer to that piece of paper as "the magic piece of paper" so much  that tonight, Ali asked us if we were going to get the magic paper at the doctor's tomorrow!  LOL we got her trained, but we really need the J-an trained!

For EB Awareness Week, would you be willing to share PUCK's website address on your email and social media platforms of choice?  http://www.puckfund.org.  Thank you for continuing to walk with us, virtual hugs and all, ;-).  This blog still completely keeps us connected to Bella and keeps Bella connected to all of you.  As a result, we're all out doing great things.

God night.

  

October 21, 2011: Another memorial...

Heaveno!

Well, we had another memorial yesterday... this time it was for Ali's fish.  He gave up the ghost yesterday afternoon.  His name was Ring, and he was a male Betta... Ali's first official pet.  The other night, he jumped out of the glass I had him in while I was changing his tank.  He somehow flopped his way from the kitchen counter into the cookie pan in the sink which had oil in it and water in it...  Problem was I was putting Ali to bed when this went down, so he was hanging out in the cookie pan for a while.  He was still kickin' and I thought maybe he was like a goldfish that can just about live in a puddle, but he only lasted 3 days after the accident.



I had told Ali on Monday about what happened and that he was pretty beat up from the event.  I told her there was a chance he might die, and she lost it.  It was rough because for obvious reasons, I want to give the girl a little break from death for a while... as if any of us have that power.  We all want that for our kids, but to think we actually can control that... well that's another story.

Ring died while Ali was at school.  I talked to Ang and we came up with a plan.  She graciously gave me a Tiffany & Co. box she had, and I put a comfy bed of toilet paper in it and laid him in it as his coffin.  Then, I cleaned out his little tank and prepared it for a new fish.  We agreed that we'd take her straight to the pet store to get another fish.  So, when I picked her up, I waited until I had her strapped in so she wouldn't have to cry in front of her classmates, then I broke the news.  We then proceeded to the pet store to pick out a new Betta.  This time, she picked a female, which is good because she is like one fifth the size of her male predecessor, so her seemingly little tank is comparatively huge!

But the real magic was in deciding what we should do with Ring.  We decided to have a funeral in the back yard.  Ali decorated the inside of his casket, wrote him a goodbye letter, made him a card, and we dug a small hole in the flower bed, put him inside with his letter and card, closed it up and made a gravestone, then I sang "Happy Trails" to him as his goodbye song.  When we walked inside, I could just tell that Ali was complete.  She had closure.  It was really a sweet time asking her questions and letting her make decisions about how to best say goodbye.  I told her that he could be Bella's pet fish in heaven now, and she slowly came around to that plan.



It's not whether we face challenges, tragedy, loss, injustice, etc. in life.  It's how.  That's where the power is, that's where the game is won or lost.  Don't curse your challenges, tragedies, losses, or injustices.  They are simply opportunities for you to become your best self... after all it isn't like any of us can really avoid these things.  Frankly, if you live in the U.S. and are reading this, you/we are blessed to have what I call "challenge atrophy."  Our standard of living is so high, the problems we face are mostly "luxury problems" by comparison to 90% of the world's population.  That doesn't make them any less real for us, because this life and lifestyle is all most of us have ever known.  We are blessed to be weak in the face of challenge, because by and large, we haven't truly experienced it like so many of our brothers and sisters around the world.  In other words, it's a good problem to have.

Bless your challenges; they are here.  Now, you can get bitter or better.

Choose.

God night.

 

Wednesday, October 19, 2011: Ramping Up for EB Awareness Week...

Heaveno!

Hiya!  Sorry I'm late.

Last night, I was cuddling with Julian on our bed, and he was just... so... happy!  We just kept hangin' out, and he just kept bein' cute, and before I knew it, I woke up and it was late thirty!  So, you got trumped by some cuddle time with the J-Man himself.  I figured you'd understand. ;-)

Life is good over here, busy, and a little sleep deprived, but overall good.  We are getting the PUCK website revamped and updated in time for EB Awareness Week next week.  The overall "look" isn't changing much, but we've been working a little at a time since August to update all the content, the success stories, how you can help, who we are, etc.  It's still a work in progress, but on Monday, make sure to cruise on over to the page, check it out, and please sign up for our mailing list!

Now, onto something that I would LOVE if each of you would do in order to support EB Awareness Week.  Our dear friend Courtney Roth - SUPERMOMMY of Tripp, has entered the Your Life - The Reader's Digest Version contest on facebook.  Would you vote for her and share her with your friends on facebook?  This is such an awesome opportunity for EB to be TOP BILLING IN READER'S DIGEST!!!  AMAZING!

CLICK HERE TO VOTE FOR COURTNEY!

That's really all to report.  Much love to you all.

God day.

Ang, Ali, and Bella back in the day also chillin' on the bed...

October 16, 2011: Fall Fun...

Heaveno!

Who says winter is "the most wonderful time of the year?"



Even though our southern California fall doesn't hold a candle to the Minnesota fall, it sure still is fun!  We spent yesterday carving and painting pumpkins, prepping pumpkin seeds, and Ali and mommy went to "Bat Night" at the Tucker Wildlife Sanctuary about 15 minutes away in beautiful Modjeska Canyon.  They did crafts, saw (dead and stuffed) bats, Ali got her face painted... yes, like a bat... good times.  Tonight, we baked those pumpkin seeds, this year opting for sweet nutmeg/cinnamon/sugar glaze instead of savory/spicy like last year.  They are pretty good!  Ali LOVES them, which I completely did not see coming, except for the part that they are SWEET... that goes a long way!



Today, Ali participated in a children's led service at church.  The entire service was run by the kids... and I mean like ages 5-12.  Bless the hearts of the parents who patiently worked with them these past several weeks prepping them for today, because they did absolutely wonderfully.  The most unexpected moment was "Parent's Time."  This was really great.  Normally, they have "Children's Time" when the kids all come up to the alter for a brief lesson before they go off to whatever they do in Worship and Wonder.  Well, today, since the service was run by the kids, they made the parents come up.  Ang was holding Julian, and we were in the back row in the corner in case we had to make a run for it with the J-Man when they invited the parents up.  It was my chance.  To actually RUN in a church service and have it totally be okay!  So, off I went, over-striding my way up to the front in a kind of "last-but-not-least" kind of way.  Good times.  



Ali sang in her first choir performance today! The kids sang "Dona Nobis Pacem" and while it wasn't exactly the mormon tabernacle choir, it was adorable, and it was a milestone: Ali's first musical performance.  Of course, when she made eye contact with me, she winked and held up two thumbs up for me as if to say, "Oh yeah, dad, I got this one!"  She just gets funnier and cuter every day.



I feel a little uneasy writing all this, because we have begun to attend a new church in our denomination, and while we miss the community of our old church, our new church has a phenomenal children's program, music program, and is much closer to our home.  I know that some members from my old church read this blog, and out of respect, I haven't wanted to go on and on about changing churches, because we do love the members and know that we are missed, it's just our new church fits our needs better, and, well, what can you do?  It really is the best place for our family right now.  The good news is that we are attending church again, and today, I think, was the first service I've attended where I didn't start crying.  I think one reason was it was so fresh being led by the kids that it kept me on my toes, and two, I really did turn a corner in my grief journey after Tuesday.  I just feel... better... and thank GOD, I'm not (yet) making myself wrong for that!

Anyone reading this that has lost someone knows exactly what I'm talking about... it's the old, I feel bed from feeling bad, but then I start feeling good, and so I feel bad for feeling good, as if it means I'm somehow "over" the person...

Noooo!  I'm over (some of) the pain, not the person!  What a mistake to confuse those two, and yet I've done it before, so I get it.  This time, it's weird; I can feel the urge to feel bad, but I just don't end up there.  I'm really grateful for this.  I keep plenty on my plate to keep me anxious and busy; missing this 'feeling bad for feeling good' thing has been just fine with me.

For some reason tonight, I had the urge to read what I wrote this day last year, and sure enough, we were celebrating autumn in Minnesota at an apple orchard with my mom, Ang's mom, and our dear friends, the Spectors.  I wrote the following that night, and as I reflect on our new church community, it is strikingly poignant:

When you go looking for God's angels to intercede when times are tough, don't go looking for beings in robes with wings. Start with the people in your life. Right here, right now. Those are your angels. Remember my "3 F's Rule:" Friends, Family, Faith. That's all you need when you get blindsided by life. Today, I had all three surrounding me. No wonder I was at peace.


God night.

October 13, 2011: A New Year...

Julian's Fabulous Footies of the Day!  Enjoy randomly placed picks of the J-Man during a recent diaper change (without the gore of course...)

Heaveno!

My auto-filler told me that this date last year had a title of A New Day +2.  Well, it was fitting to morph that a little to describe today's post.  It is a new year.  A major hurdle has been successfully jumped over.  Funny, I was afraid of hitting the one year mark because it felt like everything after a year would just seem so much further away from Bella.

Not exactly true.

It is further away from the pain, but no further away from Bella.

THIS is what the healing process of grief work is all about.  The memories and relationship don't recede, only the pain attached to those memories and relationships... IF you are willing to walk and work through that pain and fully experience it, process it, and (for lack of a better word) complete it... the pain, that is.  Otherwise, the pain stays frozen... attached... glued to the memories, and that is one thing that time does NOT heal.

We live in a very pain-averse society today, and that isn't necessarily a good thing.  Pain is a necessary signal sent from one part of the body to the brain to inform us of injury, danger, breakdown, etc.

Suffering, on the other hand, is the story we make up about the pain we experience.  If you watched either of my videos at Joe Polish's events last winter, I touched on this important distinction between the two.  In other words...

Pain is a signal
Suffering is a choice

Don't be afraid to be in pain.  The fear leads to suffering, and then you have pain AND suffering, and it becomes a vicious circle that feeds on itself.



I sit here tonight feeling like a tremendous amount of pain was lifted along with those balloons on Tuesday.  I went to work at the hospital today with none of the pain I experienced in the past couple of weeks.  If anything, there was a levity present that hadn't been there in a while... so much so that I was literally playing with colleagues, patients, even my supervisor today.  I haven't had as much fun at work as I did today in a long time.

I share all this because I think God is using me as a guinea pig to show others what it can look and feel like to not turn away from the pain of grief work.  We don't do grief well as a society.  There aren't many good models for how to do it that aren't laden with misery or suffering.  We are considered "weak" if we seek help.

FOLLY.

The human experience.  Death - Life - Death.  We (as a body) don't exist, then we live, then we die and no longer (as a body) exist.

Any questions?

And yet, our society is all messed up about this process, as if there is something inherently wrong with it.  I tell you this: the sooner we can be free around death, the sooner we can be free to really live!  We can be present, we can embrace the now, no matter what it looks like, because you know what?  In an instant from now, it's gonna change.  Then, it's gonna change again.  Then, yup, it's gonna change again!  I know, the nerve, right?



No one is guaranteed tomorrow.  Hasn't this lesson been seared into our hearts enough?  What do you think natural disasters and massive tragedies are?  Lessons!  They are the opportunities of every day, turned up REAL LOUD so we'll finally hear them through the noise of our busy lives.  I realize now that my 5 best friends being murdered the night before the Oklahoma City Bombing in 1995, and the terrorist attacks on 9/11/01 were WHAT IT TOOK for this lesson that tomorrow doesn't necessarily follow today to be permanently imprinted on my psyche.  Now, I (do my best to) bless tragedies, because it dawned on me on Tuesday that I now see tragedies in a very specific way:
Tragedy = an opportunity to become one's best self.

You know people like this in your life, in history, I suspect that many of you ARE this way.  You RISE UP to meet the challenges of the day, no matter what shape they come in, and you find a way (because there always is one) to see God in it, to bless it, to be grateful for it, despite the sweat you might break overcoming it.



Each of our journeys with its ups and downs, is valid.  The stressors are real.  They're just not significant or unique, that's all.  They are part and parcel of the human experience.  They are the resistance that we require in order to become stronger.  Muscles and bone don't get stronger without resistance.  Mind you, they can wear out from over exertion, and THAT is where self care comes in.

Do not mistake self care with self ish.

Is it selfish to eat to nourish your body?  No.
Is it selfish to sleep to replenish your body?  No.

Without your vehicle, you don't get very far, right?  Wear out your car, and it breaks down.  Then, you can't go anywhere, your plans get totally foiled, and you're out a bunch of money in repairs... oh and friends and family have the schlep your poor ass all over the place.

Sound familiar?  This is how it is with our bodies.  No different.  This is how it is with our minds.  This is how it is with our souls.

Self care.  The pathway to the required strength and courage to face this glorious human experience head on, no matter what it brings.  Think I'm full of it?  Read about Louis Zamperini.  THAT guy has been THROUGH IT... and he's sayin' the same thing.

ALRIGHT, alright... this is me now stepping off my well-worn soap box! LOL.

All I can say is that I truly feel called to share this journey, and so this is me lettin' it rip!

God night.

P.S.  Children's Cancer Research Fund put up a fun little video of me in my fabulous socks from the 5k run in June HERE.

P.P.S. It was our dear friend Courtney Roth's birthday today!  Go give her some love HERE!

October 11, 2011: One Year Later...

Anabella Ringgold May 27, 2009 - October 11, 2010

Heaveno!

Wow, so much to share.  First off, thank you to all who write the most beautiful letters to Bella.  They were just simply wonderful to read.  I'll tell you more about it below.

All in all, the day went great.  My mantra for the day was "Honor Bella and Self Care"

Near my house, there is (another) park called Peters Canyon that I've written about before.  Well, after dropping Ali off at school, I went for a run/hike into the canyon and up to "the peak."  along the way, I had a nice talk with Bella, and wonderfully enough, my dad.  My dad died October 22, 1997 from cancer when I was just 25, and we were really close.  He was an amazingly eloquent and talented writer, but a frustrated author who in the end, "never got that book done."  So, I asked him what he was up to these days in heaven, and his immediate come-back was, "I'm writing a book."

Awesome.

He continued, "It's about my son: a man that seeks to make a good decision after a bad one, and an even better decision after a good one."

To hear the pride in my dad's words meant more to me than just about anything on this planet.  What a gift that was to hear today.

When I got home from hiking, I was really sore, so in the continued spirit of self care, I went and "got that massage!"  No joke; I have a gift certificate I was given LAST CHRISTMAS for a massage and I hadn't ever used it.  In fact, it was on the very bottom of my inbox, despite being written on my self care list on my white board, "10.  Get that massage."  So, today, I did, and it was wonderful.  For any of you, I highly recommend getting a massage.  You may not think you want/need/deserve/whatever one, but is such a nice way to be gentle and care for yourself.  Do it.  Even once a year, yes, you can make that happen! :-)

Then, I worked on all the letters for the ceremony, picked up Ali, got balloons, cleaned the house, all while Ang cooked and prepared food for the potluck.  Once grandma and grandpa were over, we headed over to the park where we knew we were meeting more friends and family.

We picked a spot way out in the playing field to give the balloons plenty of room to clear the nearest trees, and also to give ourselves the space to do our own thing. We gathered in a loose circle in the grass, and began having the kids all write letters to Bella on their balloons.  That was really cute.  Then, the adults all took turns reading the 50+ letters to Bella around in a circle while we did our best to keep the kids under control.  From Australia to Europe to all over the US and Canada, the letters told such amazing stories.  It is simply hard to wrap my head around how impactful Bella's short little life was on this world.  We are so honored to be her parents.

I have to tell you, as we were working our way through the letters, Ali came up to me and said, "I wanna go! (meaning, I want to take a turn talking to Bella)"  So, when it was her turn, she looked up at the sky and spoke in a way I never imagined a 5 and a half year old could... even Ali.  Her understanding, compassion, consciousness well exceeded her normal day to day discussions.  It was amazing.  Then, when we got to the end, she asked if she could go one more time, and the last one was so heartfelt that the tears started coming.  She turned and looked at me and said, "It's okay daddy, I can see that you are about to cry."

I always knew that Bella was wise beyond her years, but today, I learned just how much Ali is as well.  What a girl.  What a soul.

After that, I read the poem I shared on here back in July/August about the boat leaving the shore on its way to a new shore, and when we all released our balloons, I sang Bella's song as we watched them climb higher and higher into the beautiful sky above us.  We truly honored Bella today, and when I say we, I mean YOU and us kind of we!  Once again, you were there walking this journey by our sides, sharing the load, making it a whole lot more bearable.

Thank you for that.  Thank you for still sharing in our journey.  You make it easier.

I had a nice conversation today with my mom who lives in CO as well.  She and I co-facilitate a Grief and Loss Retreat in Phoenix, AZ (though I have recused myself while I process my own).  Three words I can hear in my head over and over regarding holidays, birthdays, anniversaries of loved ones who have died...

"Mark the occasion."

Whether that means choose to stay in bed and pull the covers over you till tomorrow, whether it means do the same thing you always did, or try something new, bring awareness that the day simply is what it is, and it is important to grant the day the validation and respect it is entitled to.  Do something, don't just pretend the day isn't coming, here, or passed.  That isn't healthy.  So, today, we marked the occasion, and you know who was there?

The 3 F's:  Friends, Family, and Faith

I am relieved the day is behind us.  As usual, the actual event went way better than how my fear, anticipation, and anxiety said it would go!  It just goes to show me once again not to actually listen to anticipation anxiety; it rarely if ever is right.  Don't let fear stop you; instead, let the events in reality merit your attention over the events in your head.

God night, and thanks again.

P.S.  Thanks again to our dear friend Sara Cooper for taking these great pics and capturing the moment.