July 29, 2012: Walkin...

Ali playing at a nearby park with our friends...





Grinding over her music theory homework in her Ringling Bro's hat she got yesterday!

Heaveno!

Hope you are well wherever and whenever you are!

Are you watching the Olympics?  Can I just say how totally inspiring it is?  The amount of time and effort every single one of those athletes have dedicated to their sport to get them THERE... I really can't even comprehend it.  There was a commercial with a male athlete voice over saying, "I haven't had dessert in TWO YEARS."  I laughed.  I haven't had dessert in 25 hours!  LOL.  Seriously though, as if my over-achieving, work-a-holic self wasn't already bad enough... I just watch amazing story after story and just marvel...

... then I think things like...

yeah, the Olympics.  THAT's a good bucket list item.

Except, I'm of course not talking about going as a spectator.  My crazy brain starts thinking about the Senior Olympics, and if I started 'really training' now, how old do I have to be to compete?  Hey, my 40th birthday is like 33 days away, and I'm figuring, no time like the present to set yet another ridiculously out there goal!

Seriously, it gets tiring up here in my head.  Many times, I am swinging manically from idea vine to idea vine, thinking I am Timzan, king of the ideas.  Then, the coin flips, and I crash to the ground, landing in quicksand.  It is that feeling like, the more I move, the deeper I slip, that clutches at the fire inside me, plotting to quench its fire once and for all.  That's what it's like in here, but that's not news to you.  You've been reading the adventures of Timzan for over 3 years now... he flies, he sinks, he flies, he sinks.  Two sides of the same coin.  I recently started a file called, ominously enough, "The Coin" to log when my manic states kick in and for how long.

I probably made the file during one of them, because I think after the second entry, I forgot all about it.

;-)

I think I'm gonna re-write the Tom Jones classic into, "This Manic Moment."

Just kidding.

But not really.  In May, I was really having some mania, enough to start reading about BiPolar Disorder and start to interview some family members and a counselor I speak with on a regular basis, and I learned there are 3 levels of acuity, and that I sometimes resemble either of the bottom to types, but I am blessed to say that I do not exhibit the level of Type 1.  I can look back to middle school and remember my 8th grade teacher writing in my yearbook, "Tim shows flashes of brilliance, and would do well if he could sustain them," or something to that effect... I just remember the first part. ;-)  I've always called myself "a sprinter" in the game of life, and even when it came time for the Presidential Physical Fitness test every year, my hardest event was the 600m run.  I mean, it just took too much to hang on for that long without a break.  I was a fast 50m runner, but distance was just not my thing...

... some things never change.  I LOVE the 5,000m now, and wouldn't run a marathon if you paid me.

Funny how we are just wired a certain way, and THANK GO IN HEAVEN some of that wiring can be 'massaged' and re-routed a little. We can change.  I love Jim Rohn's line, "Unless you're a Goose, you can change the direction of your life.  A goose flies south for the winter.  He can't just decide this year, he's going east."... but we can.  That is good news, because it brings with it the seed of hope.  Hope is powerful, and infectious.  I like hope.  I am (still) naive enough to believe it is enough to get the ball rolling.

Look at PUCK.  We've raised over $100,000.00 in the past 18 months to help bring Dr. Tolar closer and closer to a safe treatment option for EB.  I can't tell you how we did that!  All I can say is we had a dream, and got in action.  AS SOON as you have an elegant idea for change, just get in action first, then figure out how second.  Every successful speaker I have ever heard has reiterated this conundrum.... ready - fire! - aim.  Nutty, right?

Yesterday, I was lying on the ground in the living room, and Julian was standing at the coffee table a few feet from me playing with two of our remote controls.  He had one in each hand, and he turned, made eye contact with me, smiled, and just walked over to me and collapsed on top of me like a heap.

His first steps!

It happened so fast that he didn't even know what he was doing.  Since then, whenever we are walking with him, if we so much as try to slide our hands out from his, he stops on a dime and sits down.

He's thinking about it now.  He wasn't thinking about it yesterday.  He just did it.  It's like we are trying to trick him into walking, and he has caught on and won't be doing any of this "spontaneousness" again.  I wonder for how long through his life will he be thinking or talking himself out of doing something because he doesn't fully have the how mapped out yet.  Condition: HUMAN.

This human just crashed for the night.  Timzan need sleep.

If you are considering change in some area of life, don't get stuck on how.  Make sure you have a big enough WHY, and you'll figure the how out, and that's when Providence seems to kick in anyway, so you are reminded that YOU ARE NEVER ALONE.  God is with you always, ALL WAYS.

God night!

July 22, 2012: Say Yes to Serve...

Heaveno!

Hi online blog family!  Hope you are all doing well wherever and whenever you read this.  It's been a challenging and busy week for Team Ringgold, but a really rewarding week for Team PUCK.  Our 2nd quarter fundraising results are in, so we know where we are halfway through the calendar year.  Last year, our goal was to raise $50,000.00 for Dr. Tolar and Dr. Wagner, and we ended up raising $54,718.65.  Our 3 year plan was to double that number year over year.  Now mind you, we had no real clear idea of how we were going to actually do that, but I've been a student of goal setting for long enough to have had it beaten into me that the how is NOT REQUIRED at the time of the setting of a goal in order for it to happen.  It seems counter intuitive, but through multiple trainings, seminars, books, and essays, I have been told to just get the "what" and the "by when" down on paper first, then get in action... the whole 'ready, fire, aim' philosophy Sam Walton employed to make Walmart the "ginormity" it is today.

Well, halfway through THIS year, we have raised $55,764.00... which means we are ON TRACK for our goal... still with no clear-cut plan!  Don't get me wrong, we have an idea about what events we are doing for the year, but we don't really know how much they'll pull in till their over, and they don't add up to the $100,000.00 we're shooting for.  However, there is something to be said for being in action.  I guess this just really reminds me not to get hung up on having 'the perfect plan' in place before undertaking something I want to do.

P.S.  That $55,764.00 gets doubled thanks to the generous matching challenge grant co-sponsored by EBMRF and JGSF.  Thanks to the incredible generosity of both groups, this means the docs have already received $111,528.00 as a result of our combined efforts... in just 6 months!

THANK YOU THANK YOU THANK YOU to e-v-e-r-y-b-o-d-y that has donated, shared a facebook post on their wall, served on a fundraising event or committee... we wouldn't have and couldn't have done this without YOU!  Without YOU, it would all still be just another big idea.  Thanks for bringing this into reality.



In other news, Ang celebrated her birthday on Wednesday, and we had a big party at her parent's house today.  Wednesday, Ang suggested we got to Duke's at the Pier in Huntington Beach, CA, the town she grew up in, and the site of our first date, and our fifth wedding anniversary spectacular (remind me to post about that another time).  After a phenomenal meal, we caught the most beautiful sunset on the pier.  Pretty cool birthday present, Mother Nature!  Well played!  Today's party was a group birthday party.  Ang, her brother, his wife, and Ang's stepdad, and his son's girlfriend (did you get all that?) all have birthdays this month, all within 9 days of each other!  I would like to say I have pictures but yours truly is running on 2.5 hours of sleep, and I forgot the camera.  I did have the where-with-all to snap a couple of pics with my phone.  I am sleep deprived because yesterday at 8am, I drove to Phoenix (5.5 hours) to rehearse with my old band for the second time in 10 years.  I sat in on a couple of songs 6 years ago during a concert and sat in on one rehearsal then.  It was pretty great to get back together with the guys.  We rehearsed from 2-11:30, then went to the club we are playing at in November for our PUCK benefit concert and hung out, then back home for some acoustic music making and long-winded pontificating till the wee hours of the morn.  Then, at 8am, it was time to be back in the minivan on the road to return home for today's party.





Can't do that very often, that's for sure.  I feel the ache of my body shutting down as I type so I'm wrapping it up here.

Last but not least, the title of the blog post....

I have noticed very recently that some massive doors are swinging open for me on the public speaker front, and I think the reason is because I am saying YES to serving other's needs.  It's almost like I am not pursuing speaking gigs, I am helping other people out, and as a result, more and more gigs are coming my way, which I am REALLY excited about.  I love to speak, I'm fairly good at it, and I'd really like to build speaking into a major pillar of my income and career... so... I just keep saying yes to when life asks me to serve.

What or to whom can you say yes to serving in your life/community?  Tell the rest of us!

God night.

July 15, 2012: Gratitude...

Heaveno!

Phew, it's 10:34pm and I'm just getting to the blog.

I'm beat.

Fun in the sun this evening at the concert in the park with Grandma and Grandpa should have all of us sleeping well tonight!  Thank you, grandma, for inviting us!  It was a lot of fun.  Princess Ali even said at the end, "That was actually fun!  I thought I was going to be bored."  She's been a tough one to please lately, so I'm glad it made her happy.



There was a moment when I was lying on my back listening to a mixture of WWII era swing music in the background, and my kids' laughter in the foreground.  I was looking up at this tree, with all its leaves high above.



I was happy.

Genuinely happy.



I looked at Julian crawling around without any impairments, and felt a momentary tinge in my heart.   I thought how Bella couldn't do what Julian could.  I thought how we as a family back then couldn't do what we were doing tonight.  I wish there were deeper words to use than this, because they seem inadequate, but I was SO GRATEFUL that I could be living the moment I was living, right then and there.  If you had told me two summers ago when I was holed up in a 10x10 room fighting for my daughter's life that this is where I'd be two summers later, I might have hit you.  I would not have thought that this is where I'd be, and that if it were the case, that I'd be happy to be there.



I know in different laps around the grief track in my life, I have felt guilty for feeling good again after a loved one died.  This was particularly the case after my dad died.  Compared to my 5 best friends being murdered two years earlier when they were all in their early twenties, my dad dying in his seventies at home in hospice with Enya playing seemed pretty natural and cool.  Sure, I missed my dad, but his passing was much easier to take, so I felt better 'much quicker.'  That threw me of course, because then I wondered if I loved my dad as much as my friends since I was better so much sooner....

...ever chased that tail before? ;-)

Anyway, WHO KNOWS what God has in store for my family tomorrow morning or five years from now.  All I know is that today, there was a window of happiness where we were all there together, in that same place at that same time, and we were all happy together.

Thank you, God, for that gift.

I know that this too shall pass, but thanks for letting it pass our way in the first place. ;-)



Role Reversal:

Two summers ago, while trapped in that room, I read countless blog comments about faith communities locked in prayer for Bella.  Last night at a small group session, and again today with our whole congregation, Ang and I got to offer up those same prayers for Charlie Knuth and Jackson Baldwin.  It felt great to be on the other side of that coin paying it forward.  Now, I am still at square one with prayer, but after reading Heaven is Real on the way to MN last month, I'm willing to believe that some prayers get answered in the way we can see and understand them... like directly.  It was hard reading that book.  Not gonna lie.  I sat there and felt like asking God, "So, were all the people praying around the world around the clock for Bella not praying hard enough?  What were we doing wrong?  Tell me so we can get it right next time."  I felt like a prayer failure.  I remember being afraid to prayer for a miracle when Bella was born.  Who was I to ask for such a thing?  What made me and my request any more urgent than the millions, maybe billions of prayer requests God was receiving?

I just heard God in my ear answering as I was just writing.  He said...

What makes you think I couldn't answer all 1 million prayers that day if I wanted to?  Do you think that  there is a hierarchy and a quantity to how many prayers I can answer per day?  Like a quota?  Why did you think you weren't worthy to be first on my list 'that day,' or any day for that matter?

Man, He cuts right to the chase.

Alright, then.  [clearing my throat]  God, I pray that you heal Charlie, and that you protect Jax from any harm during BMT.  I ask this of you.  Please, God.  Please protect them both.  They are precious.  They are your children, and you ultimately know what is best for them, but from this precious child of yours to you, please guide them to safety, health, healing, and happiness.  Amen.

God night.

July 8, 2012: Hmm... what next...

Heaveno!

Happy belated 4th of July to y'all!  We had an absolutely wonderful time at the home of some dear church friends, the Olivers.  Here's Ali rocking a Wonder Woman costume with their awesome daughter, Madison.



Well, we're back home and settled in (mostly) to life around here.  My main hospital contract ended before we could get a new one signed, so I am technically out of a lot of work till at least the 19th of this month when we have another meeting scheduled to 'get it done.'  Please say a prayer it doesn't get rescheduled a third time! Yikes.  I recognize I need some down time right now, but I don't really like having the down time.  I feel lazy.  You know me... Mr. terminal-doer... It also stings when you write big checks at the beginning of the month for day care and summer camp, then you are at home earning no money while your kids are still at the places they would need to be if you were working, but you've pre-paid, so whattayagonna do?





I have Julian home on Mondays regardless, and tomorrow, I asked Ali if she'd like to stay home with us and she said yes!  I was really tickled.  Her summer camp is cool in that they have lots of cool field trips to great places, and camp is from 7am-6pm ALL summer, unlike most of the other camps I ran across.  However, on the days they don't have a trip, it's a long day, so since they don't have trips on Mondays, I think me and the kids are gonna hang together on Mondays.  Hopefully, I can coordinate some play date Mondays with the other kids from school that she doesn't see at camp.

We had a couple of good meetings this week with team members of PUCK, Minnesota Medical Foundation (MMF), and CCRF.  There is a very exciting buzz around PUCK after the success of Time to Fly.  I have to say thanks again to all who joined our team, or donated on our behalf.  We are half way through the year, and a little under $300,000 of the $450,000 Challenge Grant by JGSF and EBMF has already been raised!

That means that Dr. Tolar has received an infusion of research funds, equipment, and other in-kind donations totaling just under $600,000 since January.

I want you to know just how personal this is to me and Ang.  When we first met with Dr. Tolar, Dr. Wagner, MMF, and CCRF, there was not exactly a lot of funding in house or on the horizon for EB research at the U of M.  In fact, they had recently laid off research assistants - good, well-trained researchers of EB - because there just wasn't enough funding.  The deepest, scariest thought in our hearts was that they would run out of funding, and simply need to work on other areas that were funded, and everything Bella went through would be in vain.

It's such a wicked coin toss.  I stare at pictures of Bella on the wall, and think, "Did we kill her?"  After all, here was this big, fat, happy kid who was 95th percentile height and weight, who didn't look 'that bad...'

...then I remember the rest of the story.

The part about how her left leg had never seen the light of day.  The part about how at a year old, she couldn't stand up or crawl.  The two times that her entire tongue blistered and I had to cut it with scissors so she could breathe.  The time she woke up and her ear had blistered onto her head, and I had to cut the blister to release her ear from growing into her scalp.  The time she almost died from an 'occult infection' at 4 months old.  The 4 other EB kids that died in one month when Bella was only 6 months old.

and that was just the first year with EB.

See, I want to believe that we did what we thought was the right thing, but when it ends up with your child dying, it's sometimes hard to come to that conclusion, no matter how philosophical you wax it.

At least we know that the docs learned from the summer of 2010, when two of their babies died, and a third almost did, all because they used a common chemo drug called busulfan.  Now, they don't use that drug any more, and things are incrementally better.

But that's not good enough.

Our EB community NEEDS a treatment that is EXPONENTIALLY safer than BMT as we know it today.

Today's BMT is like the model-T car, or the first black & white TV set.  It was where we had to start, but it's NOT where we are going to finish up.

THAT is what this infusion of funding is hoping to lead to.  Dr. Tolar has two further ways he wants to treat EB that will literally be exponentially safer than BMT as we know it today.  THAT is the vision we work for.  We don't want parents to have to walk through the valley of death that BMT is today anymore.  I am both hopeful for each new patient going through the trial, but I am also scared to the depths of my soul for them and their family.

Last Sunday we were visiting Charlie in the new BMT unit at U of M.  Two years ago from that date was the eve of Bella's transplant.  It was so bad.  The mucositis which eventually lead to her intubation was unlike any torture I have ever encountered.  It still haunts me.  Two years later, and the pain is RIGHT THERE.  It slithers around my heart with barbed tentacles and clutches it suddenly, almost crippling me from the inside out.  Thankfully, the frequency, duration, and intensity has diminished over time, but it takes very little for those barbs to lance me again and again.

I'll put it this way, when your kid's first (and last) word is, "NOOOOO!!!!" while you wrestle to shove a suction into her mouth, followed by a pain-dripping, "OWWWW..." you don't want to ever give up until something massively good has transpired in the wake of that horror.

Alright.  I'm in a pretty bummed out spot right now.  I can't tell if I was in a funk and then wrote, or wrote myself into a funk.  Either way, I'm going to share with you a quote from our interim pastor from his homily today.  His name is Rev. J. Dale Suggs, and man, he can put together a homily.

"When God looks at us, 
He sees the best of what was, 
the truth of what is, 
and the promise of what can be."

I'm going to practice this right now.

When I look back on Bella's BMT, I see an amazing, dedicated, pioneering treatment team that labored for months around the lock to save our little girl.  At one point, the level of care she was receiving could have only been given at maybe 2 or 3 other children's hospitals in the country, according to the Medical Director of the PICU.  When I look back on the amazing transformation of Bella's skin, and to know - thanks to her biopsies during her autopsy - that her throat was healing just as well, I know that through this treatment, Bella was growing her sister's skin from the inside out.

That is extraordinary.

When I look at the truth of what is, I see some kids doing remarkably well getting a new lease on life through this treatment, while still others die from complications from the very same protocol.  I can only imagine how confounded this leaves Dr. Tolar, and every family approaching transplant.  It's like a roll of the dice.  Are you gonna be lucky, or unlucky?

When I look at the promise of what can be, I really can see a day ten years from now where Dr. Wes Miller is consoling another parent whose child has died of a rare incurable disease during a clinical trial.  He looks them in the eye and says, "You know, 10 years ago, there was no treatment for EB, but thanks to parents like you, we have various treatment options for that disease, and no child has to die from it again."  I can believe in that promise, because that's exactly what he said to me the day Bella died, except he cited Fanconi Anemia, or FA, another metabolic disease the U of M pioneered the first cure for... 12 years ago.

I believe.

Do you?

God night.

July 3, 2012: Time To Fly... EPICALLY long post...

Heaveno!

Sorry for the two-day-late post... been busy!

Well, we're home.  Minnesota was awesome.  A little warm, but awesome.  A little buggy, but awesome.  It was so great to be back in our home away from home.  Boy, there is so much to share...

We arrived Tuesday afternoon and promptly hopped in our rental car for a leisurely jaunt up to Nisswa... aka lake country, to visit with our dear friends Bob and Lynne and their two boys.  We've been up to the cabin twice before, and if you remember back to when we were in MN for BMT, the Boschees are the ones who watched Ali for a week for us at their lakeside cabin.  Now it's becoming an annual pilgrimage, even for just a couple of days.



The new fun at the cabin this summer is paddle boards!  They are so much fun!  L-A-I-D back.  Slow, silent, and serene... especially when the wind is down and there are no boats on the lake.   Ang and I each took turns taking Ali out, but the real treat was the last day when Ang and I got out on the boards early in the morning just the two of us.  It was so tranquil.  You just glide silently across the glass-like surface of the lake, and you can see the bottom of the lake, you can go where no boat can go, you can sway right up along the shore and watch the fish... it's awesome.



Julian mostly had fun at the lake as well.  He insisted on eating sand... repeatedly.  The best part was that he really didn't look at all like he was enjoying it, but he kept at it.  Hopefully he'll employ the same ethic with veggies.  Ali was dead set on catching a fish while we were there, but the cheap starter tackle kit I got her contained lures and hooks way too big for the sunfish and occasional small mouth bass in the lake, which was fine by me because I HATE catching fish.  I just think it's mean!  I understand if you're gonna eat 'em, but if you're just stabbing their mouths and dragging them out of the water to suffocate for fun, well, it's just not my type of fun.  What was fun about fishing with Ali was that the fish were biting like crazy, but they were (thankfully) missing the giant hook and just nibbling on the furry tail of the lure.  So, Ali got to "see" LOTS of fish... just not on the end of her hook.





After a couple of days at the lake, we ventured to our friend and EB ambassador Christie Zink's farm for a wonderful meal.  I am absolutely going to 'borrow' her oldest boy, Ethan, as he is the cutest thing on two feet.  Holy cow, what a sweet little boy!  After an amazing farm-fresh meal, we packed up and headed to St. Paul, site of the Time to Fly event, to check in to a hotel close to the race site.  We didn't get in till 10pm, and since we were still on California time, Julian partied till about 1am local time.  This was not good because I had to get up at 6 am to help set up our Team PUCK tent, and 5 hours of sleep is not enough for me.  Plus, with all the training I've been doing (diet and exercise), I really wanted to take my best shot at my race time, and as I watched the hours tick away, I watched my training all slip away, and I ended up psyching myself out completely.  So, after only THREE hours of sleep, I headed off to the race site to get things going on Saturday morning.  Christie and her family also stayed in the same hotel (it was her really smart idea in the first place), so we headed over to the park and met Lonni Mooreland, founder of PUCK, and got the day rolling stuffing t-shirts into bags, hanging banners, etc.

Raceday was blazing hot unfortunately.  This was a concern because we had several EB families participating in the race, and heat and humidity exacerbate EB.  At least the event was early in the morning, and the race route is mostly in the shade right along the bank of the Mississippi river.  The events cascaded one after another... first the 10k run, then the 5k run, then the 5k walk, then the 1k kid's fun run, then the awards.  We had about 75 team members altogether, most sporting our nifty new black t-shirts... we were regretting the black choice while in the sun, but they will look cool at the gym, and they really stand out.  We wanted the shirts to be something people would enjoy wearing again, and something that will also draw attention.  Everyone also got PUCK wristbands, and business cards that had our QR code and logo on one side, and our text to donate campaign on the other.  Team members could hand them out to others at the race, or keep them and hand them out in the future.

It was really great getting to meet all 'the names' on the Team PUCK roster I had been staring at for months.  I got to meet some EB families I had heard of, and some I hadn't.  That was very special.  We also got to meet Marc and Mandy Seymour, whose daughter Quinn had JEB and went through the BMT trial and unfortunately passed away in April.  I could tell it was a tough day for them, and I was really, really grateful that they made the journey all the way from Ohio to participate.  Another amazing EB family, the Provosts, came all the way from the Chicago area as well.  Mom, Adrienne, has been a faithful blog reader, and posted lots of really supportive messages while Bella was going through transplant, so it was again nice to match a face with a name from the blog as well.  Her daughter Caroline, 6, has JEB as well, and came and participated as well!

Fueled by a mixture of 5 hour energy, coffee, adrenaline, and vitamin water, I dragged my sleep deprived carcass around the race course and actually shaved 1:04 off last year's time!  I ran a 21:19 race coming in 5th in my age bracket.  I can only imagine at this point what my time would have been on a full night's rest, but I'll have to wait and try again next year.  Still, I was happy that I improved.  The winner of my age bracket ran it in 18:10, and I don't think I was ever going to post that number, so congratulations to him for an amazingly fast time!  My goal next year is to break 20 minutes, and I think I can do it.  After finishing my run, I waited and cheered on our fundraising machine, Christie Zink, who ran (I believe) her first 5K.  Then, it was off to pick up the family and walk the 5k family walk together.  I ended up carrying Ali for most of it.  She wanted 'to save her energy for the kids run,' but the reality was that she didn't get enough sleep either!  By the time we crossed the finish line, the kid's fun run was getting ready to start so we literally ran from our finish line to their starting line. Less than halfway through the run, Ali pooped out, so I held out my hand to give her a high 5 and she pulled me on to the course to run with her.



I was so happy.  I wanted her to do that more than anything, but I didn't want to instigate it.

So, we ran hand in hand, and when she tried to poop out again, I got us singing "Firework" by Katie Perry till we got close enough to the finish line to where I could sit back a couple of steps behind her and cheer her through the finish line on her own.



I love that kid.



Then, it was time for a Team Photo.  We kind of dropped the ball on this, meaning, we didn't schedule one, so we got as many peeps at the tent as we could at one time, and CHEESE!  got one... but then, they were announcing the awards, so off I ran...



... to collect the most important achievement of the day... top fundraising team.  Including a couple of late donations, we raised $27,075.94.  Hats off to our own Christie Zink for pulling in the top individual fundraising honors as well with over $12,000 raised!  Christie won an ipad, and Team PUCK won a $300 gift card to...

PUNCH PIZZA!  YES!  Our favorite haunt while we lived there!  So, we took three of the EB families to lunch after the event.

Thanks to the EB Challenge grant hosted by EBMRF and JGSF, that $27,075.94 becomes $54,151.88.  That's more than we raised ALL YEAR last year as PUCK.  THAT is cool.

So... A BIG THANK YOU TO ALL OF YOU WHO PARTICIPATED AND DONATED!

Back to Punch Pizza....

While waiting for our food, I got to meet Jackson Baldwin, a 10 month-old boy with RDEB who will begin his BMT next week.  His mom wraps his hands and fingers the same way we wrapped Bella's, and so I reached out my index finger, and he wrapped his little fingers around it, squeezed, made eye contact, and didn't let go of either for what felt like eternity.  I then offered my other index finger and he did the same with that one.

For as wonderful as it is to pinch Julian's skin, I miss the feeling of those little wrapped up fingers squeezing and touching me.

THAT was Bella.  She was wrapped from the day she was born to the day she died, and those precious  few hours of bandage changes 3x a week were the exception where we saw and touched her skin. Life, for the most part, was our skin touching her dressings.  That tactile feeling... oh how I realized how starved I was of it when little Jax held my two index fingers.  It was magical.  Time stood still. I knelt in front of him and he began to massage my face and my head, and I slowly, gingerly did the same with him.  It was a full on lovefest.  I missed Bella so much in that moment, but Jax allowed me to FEEL tangibly that tactile feeling I had grown to love... tubifast and rolled gauze.  Thanks goes to Jax, his mom, and his grandma, for allowing me that moment.

The best part?  He was wearing the same fabulous shoe-socks that I was!!!!  There's a cute picture of it on facebook if you haven't seen it yet.

So, could it get much better?

How about getting to go spend some time with none other than the one, the only Charlie Knuth on Sunday?



Trisha gave us the green light to come visit, so with more PUCK PUNCH PIZZA in hand for mom and dad, we headed to the new Amplatz children's hospital to visit the little man himself.  (I planned to sneak a six pack of beer in... even went out and bought a gift bag and tissue paper to conceal it... but alas, you can't buy beer on Sundays in Minnesota).  The first thing that hit me when we walked into the BMT unit was that we may have been in a new building, but it's largely the same staff as when we were there, most of which we didn't see and get to say goodbye to after Bella died since she was in the PICU for so long.  Seeing some of the staff again was painful, because I realized we hadn't seen them, and you could feel the emotion in the space.  Nevertheless, we trudged forward, and entered the land of Charlie.

First off, like Tripp, Charlie is much smaller in real life.  It's funny.  When you get to know someone online only through pictures, you have an inaccurate sense of their real height or size.  People make this comment about actors or celebrities they encounter 'in the flesh' all the time, and it's true.  So, the little man was hunched over on his side in bed, and mom and dad were with him.  He was very articulate and outgoing from the onset, which put me at ease, because we were planning to have some serious fun with them, and I hoped he wouldn't be shy.  NOPE!

First, we broke out ipads and started comparing games and instruments.  He wasn't very interested in my instruments, but he really wanted to show me his favorite game, Zombieville.  Basically, it's a kill or be killed zombiefest.  So after showing me the ropes, he let me try, all the while, innocent little Bob the Builder is playing on the big screen in the room.  It got me thinking, Bob the builder is just 'too innocent.'  That wrench he always carries around?  I think it's really for bludgeoning zombies.  Even on weekends.  Even on Sundays.  So, to the tune of 'The Lion Sleeps Tonight,' I came up with...

Bob the Builder's 
a zombie killer, 
he even kills on Sundays, 
oh,
Bob the Builder's
a zombie killer,
he even kills on Sundays!


Trisha and Kevin were on the floor laughing, but Charlie really didn't buy it.  He really liked the whole builder front and wasn't ready to give it up.  Oh well.  So I broke out the egg shakers that were in my friend and fellow music therapist Dayna's guitar bag (THANK YOU DAYNA! for letting me borrow your guitar).  I gave one to everyone, and we busted into some Raffi, "Shake My Sillies Out."  THIS was a hit; Charlie was shaking his little shaker to his heart's content with the biggest smile you could imagine.  Trisha then told me she hasn't seen him smile since they arrived in the hospital almost two weeks ago.

That's the power of music in motion for you.

The sweetest moment of the afternoon though was when Ali gave Charlie a Zhu Zhu pet she won at the race the day before.  HE LOVED IT.  He named it 'Cutie,' and Charlie fed Cutie the egg shakers we were using as a snack.  We even added Cutie's name under the "Family Information" section of his white board in his room!



However, all of this takes a lot of energy out of a kid, so it was time for us to move on.  We said our goodbyes and then headed to our dear friends, Mark and Lisa Flora, for BEER BUTT CHICKEN, baby!  Also an annual tradition, we were joined by our friends the Spectors, and all the kids got to have a reunion with Ali who they spent a lot of time with during BMT.  It felt like being home.  I always feel that way at the Flora's.  They are an amazing family, and I just love them to pieces and hate that I only get one afternoon a year with them, but happy for even that just the same.





Then, back to Albertville where we were staying in our friend's Bryce and Amanda's home while they were traveling.  After the first four nights in two different hotel rooms, staying in their home was like winning lotto.  They have two young kids as well, so the home is toy-ful and kid-proof!  PERFECT!





Yesterday, before the airport, we hit the outlet shops for mommy, then paid a visit to the Ronald McDonald House to visit Jerry, and then it was time to fly... home... to what seems like the only place in the country that isn't literally or figuratively burning up!

Okay.  Enough.  Life is good.  Making a difference beats running in place and taking up space.

Go make a difference.  It feels good, and leaves positivity and inspiration in its wake.

God night.