Friday, September 30, 2011

September 30, 2011: It's Coming...


Sorry for the tardy post again... the bed just looked so much more inviting than my office chair after J-Man fell asleep in my arms in the glider last night! LOL.

What's coming?

October 11.

I can feel it.

It's a conundrum; it's anticipatory grief of a grief milestone... lame!  Yesterday, I needed to process on the phone with my spiritual advisor in the morning, and the chaplains by lunch time to keep me focused and present enough to do my job at the hospital.  There are these shards of awareness that come flashing into my brain about just how awful last summer was, and as each time I write the date in the header, my computer auto-populates the last time I typed that date in there, today was Day +90, and things were pretty intense.

It feels so long ago, like a distant nightmare.  But the sadness, just sheer sadness remains.  I wish I could say that I am present to the miracles, the inspiration, the legacy, the blessings, but unfortunately the sadness prevails.  I stay moving (remember our mantra for survival in MN?  "Keep moving"), and I know that the sheer motion I keep myself in helps for two reasons... one, it brings me into contact with new experiences that often do contain happiness, wonder, and discovery, and two, there is an element of being afraid of being swallowed whole by the despair if I stop.  I just figure if I keep creating the most inspiring context I can, this will keep my legs moving, and cause some positive ripples in the process.

On the home front, the evil house guest Thrush may just be starting to vacate, but not without leaving its mark. What a nasty thing candida is.  Just plain mean.  Thanks for all the encouragement on the gentian violet.  Ang had bought it, and wasn't happy with the reaction it had with her when she first used it, but was willing to give it a second chance, and is now using it on her and in Julian's mouth, and it seems to be working.

One interesting overlap between Bella and Julian is because of the Thrush, Ang has had to eliminate just about all dairy and sugar from her diet, so we are back to a very alkaline diet and Ang is dropping her baby weight like a bad habit, and it's keeping me skinny, too!  That and not going out to eat anymore... that always helps!

 Tonight is Ali's elementary school's fall camp out.  We are really excited because we live down the street from the school and have observed this giant event for 5 years now from the outside, and now we get to experience it from the inside.  Of course, not just the inside, but from the center as I volunteered to be the DJ/MC and lead a family campfire drum circle for all the kids. I figure, I know how to, I have all kinds of awesome instruments that don't get played nearly enough, so why not?  I know I'm gonna get hit with "Do you do birthday parties?" and I am toying with whipping up a flyer to have on hand just in case that says, "Drumtastic Birthday Parties," then have some other music therapists actually work the parties, and earn some extra cash that way...  why not?

I told you I would tell you more about the trip, long story short, my car started dying on the way out of AZ, and had to turn around and leave it in AZ.  Trouble was, I was asked to sing at a memorial the following day in OC, so I hopped on a plane that morning while my buddy Jim dropped my car off at the dealer.  Took a cab to church, (luckily had my guitar and a suit on me) played the memorial, then got dropped back off at the airport after the reception, flew back to AZ to pick up the car.... and it wasn't fixed.  SO, my buddy lent me HIS car and I drove back to OC that night so I could bring Ali to see "A Dolphin Tale" on Sunday morning (I had PROMISED to take her Saturday, and her sobbing in the car as I walked into the airport terminal is something I won't soon forget).

The good news is the dealer, ABC Nissan in Phoenix, was a CLASS ACT on Monday, and repaired the car at no extra charge.  So, my buddy Jim will drive it out here this weekend, visit his parents, then switch back with me on Sunday.


Okay.  Gotta run... I have a long list of business items to get done today, and the rest of the camp out team is already setting up (my guilt meter spiked as I walked past them this morning on my way back home and they were lugging supplies in at 8 am!).  Still gotta run to REI and pick up our rental tent as well!  Ah, the gerbil knows how to keep running, doesn't he?

God day!

Check out the nice shade of lipstick... matches mommy's shirt!

Wednesday, September 28, 2011

September 28, 2011: Back on Track... (almost)

Thanks Dwight and Myrna!  Look at this hip little schoolgirl!


Hahaha, I was planning on getting back on track last night and posting a usual post with pics and lots of words like I usually do, save for this past week of craziness... then I went to bed...

... I thought, "I can just do it in the morning.  Right now, it's time for some much needed rest."

and rest I finally got.  So, back to it!

Last Wednesday, I drove to Phoenix to attend my dear friend Joe Polish's event he threw with his buddy Dean Jackson called "I Love Marketing."  They have a great podcast at that is really funny and informative if you want to learn about marketing.  It is something every organization faces, and many cringe or shrink from, but it can be fun, and when it's done right, does more to allow an organization to realize its dream than anything else.  After all, what good is your message if you don't get it to the people who are looking for it and need it?

I stayed with my good buddy Jim, and hit the hay quickly to get a good night sleep before my first day of an event.  Live events are high intensity/energy days for me.  When I go to them, I elevate the energy I put off very consciously, and as such, I need to have a full tank of gas heading into any live event!

Thursday morning, I walked into the event, and wasn't there 5 minutes before a husband and wife who saw me speak at Joe's event in Jan (see the video here where I explained why I wear fabulous socks whenever I wear a tie) came up to me.  Sure enough, the first thing the wife asked was, "So, lemme see your socks!"  I guessed someone would ask me that question, but not that fast!  I had specifically picked out my two favorite loud, fabulous, striped socks for the two days, and was only to happy to show 'em off!

Then, the most wonderful thing happened.

A gentleman who I would describe in his late 20's/early 30's who is gotta be 6'4", shaved head, and ALL MUSCLE, walks up to me and says, "Hey brother, I just want you to know how many times I have brought people to tears since January by sharing your story of your socks."

I was stunned.  I had totally underestimated the heart inside a young guy covered in muscles.  Moral of the story?  Never judge a book by its cover.

Heard that one before?

Yeah, so had I.

Didn't stop me from ignoring it, though.

So, just maybe it bears repeating in a different way...

Don't discount what's on the inside because of what's on the outside.  Would you want someone to do that to you?  Yes, we all do it, consciously, and subconsciously, but it doesn't mean we can't be aware of it and practice overcoming this.

Thursday was great; I reconnected with lots of people I hadn't seen at an event since last January, or May, and overwhelmingly, everyone wanted to know how things were going on the P.U.C.K. front.  I was proud to tell them about the trip to D.C., and about the recent breakthrough success Drs. Wagner and Tolar are having with the BMT treatment having eliminated one of the chemotherapy drugs and substituting it with radiation.  The difference in outcomes of the first two patients has been a little bit mind boggling compared to this time last year.  The kids aren't getting sick!  Ang and I have such mixed feelings over this because it has only been a year later, and they seem to have "fixed the problem" they were having with adverse reactions to the conditioning regimen...

... if only we had waited another year.

Boy, that'll mess with you, lemme tell ya.

However, the only reason they switched it was because of Bella, Daylon, and Elle last summer getting so sick from the treatment.  If Bella hadn't been in the mix, they might have - incorrectly - assumed the adverse reactions were "a JEB thing."

And so, Bella's legacy continues to crystalize... Bella's life and death will make it better for all EB kids behind her.

Still, it is a bitter pill to swallow, and I have to recreate that legacy consciously in order to function.  The dark thoughts of regret and second guessing lurk just barely out of reach, waiting for their chance to pounce on my heart and swallow it in despair.  I remember them; they hung around every single morning during rounds.  I could hear them in the distance, just hiding outside the light of God's torch, whispering loud enough so I knew they were there.  I have walked through the forest of grief for just under a year now, used to holding the torch up, used to feeling their presence, used to never feeling alone, because they are never far away.

That is why I can never stop fighting for a cure.  Because we can't change the past, at least we can work toward a better future.  One day, there will be various treatments for kids with EB, and no child will have to die from this disease again.  As an orphan disease, this is not a guaranteed outcome.  This requires tireless action from within the EB community to ensure that day arrives.

There is so much more to tell you about the rest of the week, but I'll tell you about the rest tomorrow.

God day!  (it's 9:55am PST)

Monday, September 26, 2011

September 25, 2011: Even quicker...


Sorry I didn't post on Thursday, and sorry this is so brief.  I did travel to Phoenix, and we had a small reunion of friends over on Thursday night, and we stayed up really really late playing live music and playing in the pool.  It felt good to play.

Tonight, I just walked in the door from seeing my favorite band, Dream Theater, play for I think the 9th time since my first show in 1993.  So unbelievably inspirational... amazing.

Julian has been growing like crazy.  The thrush persists.  Boo, thrush!

Momma and Ali are also doing well.  Thanks again to grandma for staying over while I traveled.

Alright.  Gotta jet.  Just fell asleep with my head in my hands!

God night.

Tuesday, September 20, 2011

September 20, 2011: Chug Chug Chug...


Hi gang.  Not much new to report over here.  Feeling squeezed.  I can feel the ball dropping.  Such a crummy feeling.  Seriously considering canceling my trip tomorrow to AZ.  Wish I could clone myself.  Feeling grumpy that I can't (clone myself).

This too shall pass.  Not soon enough.

God night.

Sunday, September 18, 2011

September 18, 2011: Exhausted...


I am so tired.  I need a day off.  No day off in sight.  That's the nature of being self-employed.  Some months are pretty mellow, and some, well, a bunch of events end up in the same month and I am running like a madman.  That's September right now.  November is shaping up the same way, so I am really going to have to keep the reigns tight on October to make sure it stays mellow. In life, I am a sprinter, but I need recovery time between my sprints!

Today, I had the privilege of preaching the sermon at Downey Memorial Christian Church (Disciples of Christ).  This is the congregation our old pastor, Dennis Short, is now pastoring.  It was "Bring in your pop tabs day" for the Ronald McDonald Houses and Dennis thought it might be good for the congregation to hear from someone who has personally benefitted from all those pop tabs.

Did you know that pop tabs are awesome because you can recycle the can it came from, and still donate the tab to RMH!  Its like a two-for-one deal!  Also, pop tabs come from soup cans, cat and dog food, as well as soda and beer cans.  There are a lot of pop tabs floatin' around out there, so just make a jar in your kitchen, and start putting them away.  Then, you can either just drop 'em off, ship them to your local RMH, or recycle them yourself and send RMH a check.  It is SUCH AN EASY WAY TO MAKE A DIFFERENCE.

Keep saying your prayers for the end of thrush in the house... it seems to maybe be almost kinda turning the corner for the better today, but too soon to tell.  Thrush has left Julian pretty crabby about 50% of the time, which is really not the end of the world by any means, but it is painful for Ang, and must be for him, too, so the sooner it packs its bags and leaves unit 102, the better!  Outside of that, J-Man is cute as a button, a total cuddler, and behaving himself pretty well over night.  Life is good in the nest.

Ali is just about the sweetest thing on two feet.  Yesterday she got to got to two parties; a party for one of her new BFFs in kindergarten at Chuck E. Cheese, followed by a pool party at one of the kids from daycare's house.  Today, she came with me to church, then we got groceries, and she went to her new afternoon Sunday School.  She meets each new social scene with sweetness, politeness, and confidence. It is amazing to watch.  I'm just so proud of how well she can handle new situations and new people.  What a gift.

Alright, I leave you with the last paragraph of my sermon today.  The scripture was Romans 12:1-14, which was absolutely perfect to describe the synergistic energy that fuels the Ronald McDonald Houses by its volunteers day in and day out.  There are so many ways to participate with Ronald McDonald House; from accepting and putting away donations, preparing guest rooms, tidying common areas, light housekeeping, assisting in the office, and let's not forget... COOKING YUMMY MEALS!  Whatever your strengths and passions are, there's a way to express them.  Kind of like within church, and kind of like life.  This exactly what Paul is saying to the Romans in today's scripture.  He is saying that God gave each one of you strengths to leverage in His name.

Don't waste God's gifts trying to develop what he gave to someone else.

Let me tell you, God did NOT make me an accountant, and either of the two boards I sit on would be dead in the water the moment they made me accountable for all our finances!  However, God has given me a voice to sing, speak, and write with, and it is like the energizer bunny!  It just keeps going and going and going... I figure that since I can't control the quantity that comes out, I'll do my best to control the quality!

So, REJOICE in your strengths for they are truly God-Given!  RUN with them!  Don't apologize or hide from them, no matter what they are.  Just make sure to remember who gave them to you, and you'll be in good shape.  ;-)

God night.

Ali's monochromatic dinner...

Tummy Time 1...

Tummy Time 2...

Look at that face....

Ali and her BFF Karyssa...

J-Man the Cuddler...

and last but not least, BELLA...

Thursday, September 15, 2011

September 15, 2011: Mission Accomplished and Home Again...


I am writing this on the plane ride home from D.C. since I won’t get in till late tonight.  We are bouncing through the skies above Virginia trying to get above some bad weather apparently.  Boy, I hate turbulence… as if anyone actually likes it, hahaha.

Well, mission accomplished...

... But before I go on about today, none of this would be possible without Ang and her mom holding down the fort back home so that I could be not only physically present but focused and mentally present as well.  Thank you, ladies!  

Today, Dr. Tolar presented the results of the 17 patients that have enrolled in the EB Bone Marrow Transplant Clinical Trial at the University of Minnesota, and I gave the beginning and ending remarks to the panel discussion on regenerative medicine and cell-based therapies. 

As Dr. Tolar described it, “It was a 1-2 punch.”

He hit them in he head and I hit them in the heart. 

Here is my opening statement.  Unfortunately, my awesome camera person thought my camera died when it auto-shut off, so the closing statement wasn’t recorded.  It was my fault for not telling her about that feature!

Here is the transcript of my closing statement…

For those of you that regulate the doctors, help me understand, who regulates you?  You claim to stand for protecting the vulnerable, but how do you rectify all those that die waiting in line?

Parents of children with rare diseases LIVE their children’s disease.  They ARE, in many cases – as was stated – THE experts.  Why?  Because no one is more responsible for your child than you.  To the Academics, Government, and Industry: you get to go home at the end of your day.  Parents don’t punch a clock. Don’t dismiss parental consent.

If the reward of all this is progress, the path to progress is unfortunately sometimes through failure, and always involves some level of risk. No risk, no reward. No risk = No progress.

Lastly, this has been a stimulating day and a half conversation, but will disappear into history without action items.  So, what one thing can you do this week to address the legitimate challenges unearthed here?  Ideas are king, but nothing without implementation.  Your presence here indicates your passion and your commitment.  What will you bring home with you?  What difference will you, yes, the person in YOUR seat, what difference will you make?

Go make it.

Turns out some of them got the message.  After the workshop ended, I had 3 FDA regulators and a bioethicist come up to me and not only tell me how much my statements moved them, but two of them got into a very spirited brainstorm with myself and Dr. Tolar as to how to take the clinical trial to the next phase of approval based on our combined testimony today, including how to apply for more funding immediately through one particular channel.  My heart delighted as I watched them exchange business cards and talk about next steps. 

In addition, the head of the entire event, who works for the NIH, came up to me afterwards to thank me for coming and speaking.  I told her that I was accountable to the entire EB community for what comes out of this meeting, so how could I follow up with her to make sure there is outside accountability in the processes that were identified at this event, and she gave me her email address and invited me to reach out to her personally when the first draft of the white paper from this event comes out (which will be in a month according to Dr. Wagner) and she will keep me involved. 

I have to tell you how intimidated I was to give the audience both barrels, because there is a large part of me that wants to be liked by everyone and is also non-confrontational.  However, Drs. Wagner and Tolar were counting on me, and I know I’ve written about this before (a while ago), but what is magical about the transformation that occurred when I set foot behind the podium was the same thing that gave me strength with all the docs along the way… it was all for Bella.  

Being Bella’s daddy and essentially (still) fighting for her has given me a level of purpose and - not confidence - but courage that I simply don’t possess when it comes to fighting for me.  Who knows, maybe it is rubbing off a little.  I talk a good game, but inside, I’m still just a kid who got beat up for talking back as kid on the playground, and watched my 5 best friends murdered for fighting back with their landlord as a young adult.  There is a deep vein inside of me that says standing up for yourself and fighting back can get you hurt or killed, and I have to overcome that totally irrational feeling.  Doing it for Bella seems to make it much easier. 

I have to say that I felt so privileged to speak with the caliber of researchers that attended this workshop.  The best researchers across the country in gene therapy and cell therapy came and presented the amazing groundbreaking research they are doing, coupled with the obstacles and barriers they face along the way.  Holy cow; what a devoted, and really, really smart group of people!  So many great people are working so hard to help kids of so many different rare diseases.  It was very heartwarming.

Dr. Wagner did an awesome job taking notes over the two days and put together an initial white paper of all the topics, challenges, and opportunities covered which will go out to all of us participants this week for review, revision, or addition in case he missed something.  I’m really privileged to support him.  He has a huge heart and endless passion as well as leadership.  He and Dr. Tolar just continue to inspire me to do what I can on my end to realize this collective vision of EB becoming treatable. 

One thing we uncovered today which is REALLY EXCITING is that a treatment moves from “experimental” (read: almost no insurance reimbursement) to “standard of care” (read: insurance reimbursement!) after a certain number of hoops have been jumped through.  Well, that guy from the FDA that was talking to Dr. Tolar and me felt very strongly that Dr. Tolar has demonstrated sufficient data to move the treatment at the U of M to that standard of care level.  This is really exciting, because it means the FDA will give its stamp of approval, which will mean the U will be able to bill insurance companies to cover the treatment!  Now… of course he was careful not to promise anything in stone, much less a timeline for this, much less that insurance companies will actually reimburse, but they won’t be able to hide behind the “experimental” defense and say no to coverage!  Progress, progress, progress.
Now onto the follow up.  That is the key to all of this.  Too bad I am not an implementation specialist… I am an idea guy and a connector… front end stuff.  Good thing my amazing wife is the queen of implementation!  Honey?  Will you follow up on me following up? LOL.  Hey, play to your strengths, right?

After the workshop, I had 5 hours to kill before my flight, so me and my bags hopped on the metro (D.C. subway), went to the capitol district, hopped on one of those double decker buses, and spent 90 minutes in awe of our beautiful capitol.  Then, I hopped off the bus, used my smart phone to find the nearest subway station, and hopped over to the airport on the subway with oodles of time to spare.  Man, public transportation… it’s amazing!  Enjoy my tourist pics!

National Archives.

U.S. Capitol.

Smithsonian Institute.

Jefferson Memorial.

Lincoln Memorial.

Washington Monument.

The White House.

Lastly, I am excited to be on my way home to my family.  I can’t wait to see each one of them.  I love being a family man.  Earlier in my life, that statement would never have come out of my mouth, and even through the tragedy we have endured, the sublime joy of loving four other people as much as I do has totally been worth all the pain of loss along the way.  I’d do it again EVERY TIME.

God night.

Peaceful Bella...

Tuesday, September 13, 2011

September 13, 2011: In D.C... well, not really...


After a gloriously uneventful trip across the country, I find myself back on the east coast.  I say back because I was born and raised and (almost completely) college educated between Connecticut and Northern Virginia.  Tonight, I type from a hotel in suburban Maryland, just "inside the beltway" in Bethesda.  I flew into DC/Ronald Reagan airport, which made me SO HAPPY.  That airport is practically right on top of the capitol.  You fly right past the pentagon, and can see all the monuments even from the runway as you taxi to your gate!

It was so stirring to see the Pentagon, as well as all the other monuments, particularly after watching all the tenth anniversary specials of 9/11 on Sunday.  I was filled with a new reverence.  I was genuinely inspired and moved just by their sight.  It wasn't the first time I had seen them, but it was the first time in roughly 20 years.  Ugh.  I can't believe it's been 20 years since I've been to D.C.!  I am in shock.  I think I actually stopped in D.C. on the way to moving cross country in '95, so it's not as bad as I thought... almost, though.

The other bonus to flying into Reagan is that old town Alexandria is about a 5 minute cab ride away!  This is one of those colonial gems where the sidewalks are all still red brick, the streets down near the Potomac River are super tiny, and the town homes are well over 200 years old, but all look beautiful.  It's one of those places where you can drop a million bucks on a town home, and while you have a piece of history in an amazing community, you're still in a town home!  That's okay with the folks here, though.  The charm, warmth, and history more than make up for it.  Besides, if you want a house and a yard, there are a plethora of planned communities just outside the beltway in MD and northern VA.

I went to college for 2 years 60 miles south of the capitol, and have fond memories of this area.  It was great to be back.  One of my closest friends from college JUST moved from Alexandria TWO WEEKS AGO... talk about bad timing on my part!  LOL.  He was still able to guide me around Old Town so I could find just the right little eatery for me.  The first place he sent me had a great bar and beer selection, and he warned me they had some weird menu items, and I thought I was up to the task until I read down the menu and saw...

bone marrow.


Ironic that I'm here to talk about my daughter's bone marrow transplant? no?

Needless to say, I passed on the bone marrow and the restaurant!

Virtue Feed & Grain... Home of bone marrow...

Take two... PIZZA!

Andy directed me to a place very reminiscent of PUNCH PIZZA in Minneapolis... complete with the wood fired oven!  Check out the comparison!

Punch Pizza...

Paradiso Pizzeria...


Anyway, I had a wonderful meal, hopped in a cab, and rolled up the beltway to suburbia here to my hotel, where I'll shuttle back and forth to the National Institutes of Health also in Bethesda.  Tomorrow we discuss protein and gene therapy, and Thursday morning, we discuss stem cell therapy, and that's when I speak.  Tomorrow, I show support for the two other advocates here with me.  More on them on Thursday.

In the meantime, I am a little intimidated about the whole adventure; I hope that I have a positive impact on those here.  My fear is that I will be around academics, researchers, and policy makers, and I just wonder how much experience they have on the front lines of care.  I guess that's why they bring us in - to appeal to their human side.  I imagine it is a fine line to appeal to that human side without sounding overly emotional and turn them off.  I remember what a balance that was to walk in MN.  I know that histrionics may work on the political campaign trail and in congress, but in the medical world... it is not taken well.

So, measured tones, but powerful words have been pined over, edited, revised, and rehearsed.  I hope they are the right ones.

God night.

 No, these are not Julian... it's Bella!  (But J-Man makes the EXACT same faces!)

Sunday, September 11, 2011

September 11, 2011: Past, Present, and Future...

(Not) Rockin' the paddleboat at Irvine Regional Park yesterday...


As I was writing today's date up above, I was struck by how poignant today's date is for the obvious reasons, but for one other.  So much has happened in ten years.  Take a second and think back... not to where you were on 9/11, but where you were in your life.  Where were you working?  Where were you living?  How old or young were your kids?  Did you even have any yet?  Who was your significant other?  What was important?  Now look at yourself.  I don't know about you, but for me, the last ten years happened to be massively transitional and transformative, but that was what I was seeking.  I wasn't fulfilled; I knew I hadn't even scratched the surface of my potential yet, and I wanted to become more.  Today, I feel like I have scratched the surface, and yet, have only just begun.  My guess is that the next ten won't be quite as transitional as the past ten, but God only knows, doesn't she? ;-)

What hangs in the balance for me is where will EB research be, and will there really be various treatment options by then, such that no child ever has to die from EB again?

This is the vision that Jay and Lonni Mooreland, Angelique, and I have pledged to create through PUCK, and while I know the ability for us to "control" that outcome is nil, the ability to influence it...

... is MASSIVE.

See, all things that come to pass, both good and bad, are byproducts of someone's unflinching vision.  The terrorist attacks ten years ago today were the result of someone's unflinching vision, who in turn influenced a big enough team to implement the horror we all watched on TV that day.  I have been studying influence a lot lately, and the authors of literature related to influence ALWAYS discuss that it is a tool that gets wielded for good and for evil.  I guess in Star Wars world it might be synonymous with The Force.  We get the opportunity to use its power, and in turn we are responsible for the results.  It takes vision, but then influence to bring that vision to reality.

In a more inspirational example, think of the influence of Dr. King. He laid out his vision clearly in his "I have a Dream" speech.  Today, I watch Ali play in a multicultural setting - whether it is on the playground, at church, in school, at daycare - every single day.  All those walls have been nonexistent for her since the word go.  That is vision and influence expressed and realized.  That is inspiring and empowering!

I guess I have a dream as well, that one day, children with EB and their parents will not face the long slow road of pain and suffering, but instead will have multiple roads to choose from where a better life lies at the end of each one.  I know that I am not alone in this dream, and I am BLESSED to stand beside  leaders like Brett Kopelan and the entire team at DebRA, Andrea and Paul Joseph and their team at EBMRF, Alex and Jamie Silver and their team at JGSF, and Lonni, Jay, and Ang and our team at PUCK/CCRF.  Talk about a DREAM TEAM... I am so inspired by all these people, I can tell you they have caused me to be a better human on this Earth.  They inspire me to be the best version of myself I can be.

This week I get the honor and privilege of speaking on behalf of the EB community in Bethesda, MD at the Nation Institute of Health.

I get 5 minutes.

I can deliver a TIDAL WAVE of passion, purpose, and inspiration in 2.

It is AMAZING how when we answer God's call, she lays out so many different ways to support us, and simply conspires to make us successful, despite how it may look from moment to moment.  I can tell you that in 2002, I went through a grueling 7-month leadership training program where I was taught how to deliver a "vivid share" that could move a room to tears in 2 minutes while speaking openly and authentically from my heart.  Who knew I would rely on that training 9 years later for a completely unrelated event in my life that I would have no way of knowing was coming?

God did.

God sees it all.

God has a plan, and it is beautiful, when seen in its entirety.

The challenge is being human, and as such, being in the painting itself.  It is quite the conundrum to behold the painting and be in the painting at the same time, is it not?  This is where that gift we give ourselves called faith comes in such handy.  For me, one of the principle foundations of faith is trust.  Think about any time you've had to hang a picture.  Notice that you are so close to it, you can't really see if it's crooked or not. So, you call your spouse in for guidance.  They have a view - a perspective on the painting - that is impossible for you to view from where you are.  So - because you trust them i.e. have faith in their vision - you ask them for guidance, and follow their commands.

Now I'm sure some of you can't stand to just listen and hear him or her guide you without questioning their direction... I can hear those thoughts now while your spouse is directing you... "THAT doesn't look right... are you sure?"  Some of you even say it out loud!  There you are, asking for their view, knowing it is clearer than yours, and at the same time resisting the answers you get.

Sound familiar?

Ah, how we do this with our selves, with the ones we love, and with God.  We ignore that still small voice inside telling us to slow down, until it either threatens to shut us down through a cold, or even worse, a disease or accident.  We ignore the ones we love until an ultimatum gets thrown at us.  And perhaps most easy of all, we ignore God, because after all if God truly loves us unconditionally, we can simply get away with it.  Now that might sound a little harsh, but hey, sometimes the truth hurts.

Imagine listening and following God's guidance and commands for ten years straight.  Where might God take you?  On what magical journey is your seat already reserved?

God only knows!

God night.

Fun with Julian's new sunglasses!

Ali's new pet, "Sparkles!" and her new mermaid she painted at Color Me Mine to keep him company... yes, I said him.  She named him, not me!

The J-Man sleepeth... way too much today... I fear we're in for a long night!

and the reason we are all here... Bella...

Thursday, September 8, 2011

September 8, 2011: Thrush...


Ugh.  It is upon is.  Thrush.  Turns out both Ang and Julian have it.  The lactation consultant yesterday explained that thrush is common among c-sections because the antibiotics given due to surgery wipe out the flora that keep thrush at bay, thus letting it run amok.  Wouldn't it be prudent to ask a repeat c-section patient if they developed thrush in past pregnancies, and if so, prescribe an anti-fungal prophylaxis?  However, when you are at a hospital that pumps out 5,000 babies every year (no joke... seriously 5k), that might just be being a little too detailed with the patient.  Yes, that was sarcasm.

What this means is pain for mommy and pain for Julian at feeding time, and has left us with one crabby baby over the past 12-24 hours.  Luckily, the lactation consultant caught it relatively early and now both momma and Julian are on medicine.  Still, it's a bit frustrating since it was really high on our radar, and yet we still couldn't avoid it.

Alright, gotta keep it brief tonight; I'm working on my statement for when I testify in front of the FDA and NIH next week in MD.  Dr. Wagner would like a draft by Saturday to see if I'm on track with what the focus of the workshop is.  They are conducting a two-day workshop on examining the obstacles in pediatric clinical trials, and Dr. Wagner asked me to testify and tell our story.  I am flattered and honored to speak to a body of people that will include the NIH, the FDA, government staffers and officials et al.  I have always preached that if you want the right to bitch, first go and be part of the solution.  Be of service and earn the right to speak you mind.

God night.

Nightly story time...

Nightly Julian time for Ali...