Sunday, December 29, 2013

December 29, 2013: R+R=R&R...


Rest + Relaxation = Recharged & Revved up!

Hope y'all had a happy and holy Christmas filled with joy, love, and wonder.  I say wonder because I saw wonder on two fronts, and they were through the eyes of children.

Thank God for children.

The wonder was on the secular front with Santa and on the sacred front with Jesus.  See, both Christmas stories require an essential ingredient, and it's the word that the conductor punches into the boy's ticket in Polar Express…


Neither story has any magic or power in it if you don't believe.

If you DO believe, however, the season is MAGICAL.  The expectation on both fronts creates an anticipation that is palpable in children.  I saw it at church in front of the advent wreath, and while the children rehearsed for their Christmas Eve Pageant, and I saw it at home in front of the Christmas tree.  Preparations were in order, and a level of conscious awareness of "naughty or nice" was heightened.

It was a magical experience TIMES TWO!

Last week was a blast; we spent time with both Ang's family and mine, and Ang and I even got a day and a half on our own thanks to my parents.  We just got home tonight, and Ang and I return to work tomorrow.

I am really excited about 2014!  Life is such a gift.  I mean, think about it.  We have the ability to look at the coming year as a blank slate on which we can create a MASTERPIECE.  We can dig in and work hard at solving big problems, little problems, math problems, boy problems, and anything in between.  Want to fund breakthroughs in science, technology, biology?  No problem.  Want to fund micro loans to farmers in developing countries to help them break free from a cycle of poverty by starting their own businesses?  No problem.  Want to fund a well that will supply clean water to an entire village in Africa?  No problem.

We can do ANY of these things we want.

Man, we are so lucky.

One new venture for me this next year is that I'm partnering with a longtime colleague to teach business skills to clinicians so they can stay in business, make more money, and help more people.

What are YOU going to conquer/accomplish/obliterate/solve/create/provide in 2014?  Post something inspiring below and let's create a DREAM /VISION WALL for the new year!  See you in the beauty.

God night.


Sunday, December 22, 2013

December 22, 2013: A light blue Christmas...

Ali's awesome hair for her dress rehearsal of the church Christmas musical…

… and from the front…

First time in a booster and first time rocking the straw!

One of the greatest and best pictures of all time…

Not to be outdone by this one… from mommy's company's "winter open house " (PC for Christmas Party)


Ironically, despite all those hilarious and uplifting pics, I'm writing about a heavy subject, but a subject that none of us escapes.  


I want to start off with an AWESOME quote from Pastor Randy Hill from Healing Heart Ministries in Hunting Beach, CA.  Pastor Hill and I worked the annual remembrance service for Fairhaven Memorial Park two weeks ago.  I led christmas carols and accompanied a soloist on Silent Night, while Pastor Hill gave the sermon.  Here is the quote:

"Great grief is not a sign of poor faith."

It was nestled into the middle of a paragraph of thoughts that Pastor Hill was sharing, and it just jumped out "in bold print" (aurally speaking) at me.  I approached him afterward to make sure I got it right, because it was so profound.  I know I have written about grief before, and I seems like a distant memory at this point, but unfortunately grief itself is not a distant memory.  

Christmas remains bittersweet.  Ali picked out a pair of fabulous socks to put in Bella's stocking today.  Going into the baby aisle at the store and looking at the cute little girl socks and reaching up and picking the ones Ali wanted caused pangs of pain in my chest.  There remains the duality of grief and joy, ever-present.  Missing Bella and delighting in Ali and Julian - simultaneously.  

I was greatly comforted by this quote.  It reminded me that the game is not to try to use some strategy to avoid grief; grief is unavoidable.  It reminded me that grief and faith don't necessarily have any relationship, direct or inverse.  It ISN'T true that "the more faith you have, the less you'll grieve."  And… It's also NOT true that "the more faith you have, the more you'll grieve."  They're just not related at all.  

I think people who think that they have faith and yet find themselves beset by grief may be confused by their own despair… like it's a sign of weakness in their faith armor or something.  This is when the dreaded and useless "Shoulds" can kick in.  Like, "I don't understand, I should be feeling better, after all (my loved one) is in a better place."  or the flip side, "What's the matter with me?  I shouldn't be so selfish and upset, (my loved one) is with God now."  

Or worse, once the shock of the loss wears off, we may feel worse than when we initially found out about the loss.  Then what do we do?  Is our faith slipping?  

Circling back to Pastor Hill and the event where we met… it was a free community event in this beautiful old church that is built as a miniature cathedral… like totally to scale, but maybe only fits a couple of hundred people.  The service was offered over two nights, and both nights, the church was packed; packed with people who had lost a loved one and needed to mourn over the holidays.  Fairhaven Memorial Park, being as awesome as they are, has filled this need for 17 straight years now, and I felt really privileged to minister to so many people that I would otherwise never intersect with.  

They had a "roll call" where you could fill out a form about your loved one, and they would read their name and the small details about them… like a micro-ulogy, and a family member could come up and collect an ornament to hang on your Christmas tree at home in remembrance of that person.  I thought it was so sweet.  When I asked the lady about the forms, she said, "Would you like me to fill one out for you?"  (She didn't realize I was working there) and I said, "Yes."  I gave her Bella's info, and when she asked me what did I want her to be remembered for, I replied, "for inspiring the world."

During the role call, my job was to play gentle instrumental guitar in the background.  They told me it would be about 15 minutes, so I prepared a 3 song medley that is roughly that long.  As I was playing, I heard Bella's name called, and the man reading recited what I asked them to say.  The tears came as I played my guitar…

… know what song number 3 in the medley is?

"Bella's Song"

"Bella's Song" began as an instrumental piece, and for a long time, I played it that way to Bella while she was still in the womb, and it was only with Ang's encouragement that I finally set lyrics to it, with her and Ali's help.  So, it was a bittersweet moment to be playing her song while we remembered her… none of the people there knew who she was, and none of them knew the song I was playing, but she and I knew what was happening.  The event coordinator who hired me for the service was very sweet; when the service was over, she walked right up to me with an ornament stretched out in front of her and gave me a big old hug.  I really appreciated that acknowledgement.  She knew my story, and while she didn't recognize the song, she recognized a daddy who was missing his little girl.  A lot.  

Great grief is not a sign of poor faith.  

It's a sign of deep love.  

Wear your grief proudly.  Feel it deeply.  You've earned it.  You've risked it all and loved.  

For if you haven't loved, you haven't lived.

Merry Christmas and God night.

Sunday, December 15, 2013

December 15, 2013: SHOUTING TO THE ROOFTOPS...


This post is a straight up honor and shout out to Christie Zink.

Christie is the Relationship Manager at PUCK, and an absolute Saint-in-Progress.

Christie organized and managed a fundraising event in Minnesota yesterday called Wings of Hope to continue to support Dr. Tolar's research to find a safe, effective, systemic treatment for severe EB.  There were 50 guests, and from the photos I've seen on Facebook (thank you to Trisha Knuth, Vanessa Delgado, SooAnn Roberts Pisano, and Amanda Clark Pfeiffer for posting pics!), it looks like it was totally warm, fuzzy, yummy, moving, inspiring, and every other juicy word I can think of.  Not only that, but it looks like, thanks to an unbelievably generous matching grant, more money was raised at this single event than at any PUCK event to date.

Christie, I don't know where you find the time or energy, but you are just about the most passionate person I know, and I am so honored to work with you and I am so inspired by your commitment to Dr. Tolar cracking the code and delivering a treatment to this amazing community of EB families.  We both know that it is SO much bigger than that, though.  We KNOW that this line of treatment has the potential to open doors of treatment to so many more than just those with EB.  It's bigger than any of us.  Thanks for being able to see the view from that high elevation, and still able to get right down into the trenches of the tiniest and thoughtful details.

Thank you for all you do… not just what you do, but how you do it.  You have a GIGANTIC heart that is LITERALLY overflowing with love.  It spills out onto all whom you touch.  It is humbling to witness.  All of us who are lucky enough to know you are better men, women, and children for it.

I just returned home from a seminar that I first attended 3 years ago at this time to learn how to share Bella's journey from the stage and raise money and awareness for Dr. Tolar's work.  In 2010 and 2011, I was given the opportunity to speak on this stage in front of 600 other speakers, authors, and entrepreneurs by the generous host, James Malinchak.  Yesterday, I got to sit in the lobby and report to one friend I met there 3 years ago that Dr. Tolar has received over a million dollars in funding for EB since he and I first met.  Who cares how much was given by whom, that's not the point.  The point is that the Dr. who is breaking new ground in EB research for severe EB has the funds he needs to stay on course and 'stay in business.'

The reason I mention that is because there was another guy there this weekend who also ran a small charity, and in that same time period, went out of business.

Thanks to people like Christie Zink, I don't go to bed worrying about that happening to Dr. Tolar's EB lab anymore.

God night, and God bless you, Christie.

Sunday, December 8, 2013

December 8, 2013: God Has a Plan… right?

Catching a little "Polar Express" before bed time.  Ali has her "Polar Express" hot chocolate mug in her hand from when we went on it in Colorado… and yep, it's full of hot chocolate!

Happiest kid in California on his tricycle…


"Don't be afraid, God has a plan." 

- lyric from  one of the songs from Ali's Christmas pageant.

I think that might have been the essence of my last post.  However, I have to confess, sometimes I wonder.  I try to wrap my brain around the massive possibility that in all of this madness called life, there is a master conductor above it all, weeping, laughing, and cheering at all of it.  Hard to imagine, right?  I laugh at the audacity of even attempting to imagine it in the first place!

I am reminded of the conversation God had with me back in Minnesota. I'll try to recall it for you.  I'm pretty sure I've shared it before, so it might not be verbatim, but it'll be close.

I was sitting on my morning bench in the park reading all the comments from y'all, and praying for the day I was about to face in the PICU, when God simply said, "I'm taking her home."

"You're WHAT?" I replied.

"I'm taking her home."  He repeated.

"WHAT???  Seriously?!  You didn't just send us all the way here to MN, you didn't send us ALL THE SIGNS to come here… only to take her home!?"  I retorted.

"Look down at the sidewalk." God instructed.

"Okay."  I looked down.

"See the ants going back and forth in the crack?"  A highway of red ants were galloping back and forth in the groove between the two pieces of sidewalk.


"Are they in the same reality as you are?"


"I mean, if you stepped on them, would you impact their reality?"


"Now look up."

 I looked up, and saw the downtown Minneapolis skyline through a break in the tree line.

"Can the ants see what you see?"

I looked back down.  "No."

I got the point.  Just as the ants couldn't see what I could see from their vantage point, I couldn't see what God could see from His vantage point.  I just had to trust.

That was some of the heaviest lifting - spiritually speaking - I've ever had to do.  However, the stakes were SO HIGH, that there was no illusion of controlling her life.  I HAD to turn her life over to God.  Faith and trust in a plan were actually easier for me to employ in that circumstance than in the day-to-day busy-ness that I find myself in these days.

I'll also confess that I have been really reluctant to "try on" faith and trust again.  Here's where I get tripped up, and PLEASE tell me if you can relate to this.  I "have faith" that God will do… my will - not His.  I got tripped up and "burned" in MN because I was praying for my will, not His.

You know what I just realized for the first time?

It may be semantics, but I resist the idea of "God's Will."  Why does God need a will?  He is the almighty all-everything, right?  What could He possibly need/want? Still, when contrasting the phrase "God's Will" with "God has a Plan," I find myself gravitating toward the second phrase… somehow I feel less like a pawn and more like a partner.  Hahaha, once again, there goes my ego… partnering with God.  STILL… part of me wants that kind of relationship… Co-creating as some call it.  Maybe there is some level of partnership available, AND there is a level God hangs out at that is simply too tall to grasp… like the ants trying to see downtown.  There's probably a good song title, book title in there…

The Ants Can't See Downtown, and You Can't See God's Plan… So You Just Gotta Trust.

Don't think that one is making it onto the empowering/inspirational self-help shelf any time soon, but hey, you never know!


God night.

Sunday, December 1, 2013

December 1, 2013: Happy Thanksgiving!


Hope all y'all stateside had a happy Thanksgiving!  We drove out to Phoenix to spend the weekend with my mom and her husband Ralph.  They throw a great Thanksgiving dinner… I'd drive to Phoenix for Ralph's stuffing any day frankly!  Anyhow, we overcame the urge to try to cram in a bunch of visiting with friends as well, and just made one quick stop in to a friend's home on the way out of town to see their new baby.  The rest of the time, we were pretty successful at NOT scheduling anything and letting the mood drive our plans.

What a nice change from the past.

We used to book a lunch with this person, coffee with that couple, and dinner with this family, et cetera, and it would wear us out.  Cheers to slowing down and enjoying leisurely walks with mom's springer spaniel, Max.  Cheers to enjoying a beer on the back patio with Ralph while the ladies shopped.  Cheers to sleeping in.  Cheers to leftovers.  Cheers to watching Ali sew on Nanny's sewing machine.  Life is good.

On the ride out and back, we listened to Malcolm Gladwell's latest book, "David and Goliath."  I've read all his other books, and his formula is beginning to become a little predictable for me, but there are some interesting stories in this one (like all his books).

Here's my question for you, and please honor the community here with your comments if you will…

"What single thing are you NOW thankful for, that when it happened, you never imagined you would be?"

For me, it's probably pretty obvious:

Bella having EB.  So many people's lives have been powerfully, positively, and permanently impacted by her journey, and I only dare say that because they tell us.  It is an honor to be her daddy, and her storyteller.  I struggle A LOT with some pretty heavy self doubt, and she gave me a gift by being our daughter.  I had to "show up" as caregiver, wound care expert, daddy, advocate, etc. day after day, and in that journey, I became someone I didn't think I could.  I didn't think I "had it in me," and now that I know I do, I have a lot of confidence in being a bad ass daddy for Julian and Ali for the rest of their lives and mine.

Several times a week, I experience some sort of anxiety or terror inside at the prospect that somehow I'm a grown up now and am somehow supposed to have answers for my kids, when I still feel like a kid walking around in a grown up's body (trying to) fool the world that I'm really not just an overgrown 8 year old.

Bella gave me a chance to dispel all that disempowering chatter.  I could have blown it, I could have run, I could have fallen apart, I could have shrank, but as it turned out, I didn't.  In those times of dark self doubt, I can look back and see who I really was when the chips were down.  Crisis can really reveal a lot about a person.  Watching the way Angelique showed up, day after day, watching the grace Bella showed day after day, inspired me to have the best version of myself show up every day as well.

Best line from Gladwell's new book?

"Courage isn't some thing that you already have, that makes you brave when the tough times start.  Courage is what you EARN, when you've been through the tough times and discover that they aren't so tough after all."

There are still scars and sadness in my heart on multiple levels from the journey, but I am thankful for the scars.  Bella helped me see that I can be more than my doubts.

Yet if I could just wave a magic wand and entertain one fantasy, it would be to have all three kids together at the same time… here.  I would love to see Ali loving all over both her younger siblings as she is a love machine to Julian and was to Bella.  I'd love to see Bella giggling and laughing her big belly laugh at Julian, and Julian smiling his giant grin at her and hugging her.  It's so cute when he says, "HI ALI!" when he sees her in the morning.  The genuine excitement in his voice is just adorable.  What I would give to hear him blurt out, "HI BELLA!"

Still, while I go to bed tonight with a sad heart, I am still thankful for ALL OF IT.

God night.