Thursday, June 30, 2011

June 30, 2011: Celebrate.


There is a scene in the movie, "Enemy at the Gates" where a squad of Russian snipers are celebrating with song and drink after dinner underground during the brutal battle of Stalingrad.  They partied every night, because they knew that, for some, the following day would be their last.  It is a poignant scene.  Men and women choosing to celebrate life, not knowing if it were their last chance or not.  There is an undercurrent of misery among the festivities, as if the 900 pound gorilla of war was standing on top of them all, but they celebrated nonetheless.

3 EB babies passed away this week.  One year ago today, Bella was coughing up esophageal tissue and choking on her mucus.  Vomit and diarrhea were non-stop.  It is as if we are at war.  War with EB, and it is still winning.

HOWEVER, despite the tragic casualties this week, there are victories as well.  And for these victories, it is cause to celebrate.

Most of you know baby Daylon - Bella's boyfriend?  He just celebrated his DAY +365 since transplant this past week, and tomorrow, we celebrate his 2nd birthday party.

Folks, there wasn't going to be a 2nd birthday party, and it was a miracle he even celebrated a first birthday party.  As Dr. McGrath said while Daylon was roughly Day +20 or so, his body was shutting down as they went into transplant, and he had very little time left.  My goodness, he and his amazing family have been through SO MUCH this past year, but you know what?

He's still here, and since his most recent trip to MN, he's getting better every day.

GOD be praised, because just about every doctor along the way (except his docs in MN, Dr. Wagner and especially Dr. Tolar) has written Daylon off.  I can't even begin to imagine the statistical odds against Daylon surviving all that he has (read his mommy's most recent blog entry HERE for a recap), but he has, and no doctor can scientifically explain why.

Kinda like they can't scientifically explain God... ;-)

Sometimes, God just has to pull rank in order for us to have a chance to learn and grow.  Sometimes, we aren't able to see the lesson as we are learning it... that's why we are called his CHILDREN.  We expect no less of our own children, do we?  We cause and create circumstances and situations for OUR children to learn and grow from, even if they don't understand it at the time, and if we really are created in God's image, why would it be any different?

Despite the PANGS of regret I feel from Bella's death when I see a comment from an adult with RDEB on an article somewhere, I choose to CELEBRATE Daylon's life instead.  I CELEBRATE Charlie.  I CELEBRATE Payton.  I CELEBRATE Sam.  I CELEBRATE Keric.  I celebrate all these courageous kids and their parents who have walked into the valley of death and come out the other side transformed.  These first generation of EB BMT patients are changing medical history.  It has been a war for each of them... a war with EB AND BMT, but they have persevered and are sowing the seeds of hope for all families with JEB and RDEB kids.  It is still the dark ages of EB BMT for sure, but there is hope.  There is progress.  There is success.  5 years ago, there was NONE. 4 years ago, there was NONE.  Thanks to the courage, perseverance, and tenacity of Theresa Liao (the mom of patient #1 who single handedly sought out and charged Dr. Wagner with saving her son), there is now 3 years of research data, and a half dozen kids with simply miraculous outcomes.

Granted, it hasn't exactly been a perfect game.  There has been much loss along the way, but that is unfortunately the way of all things.  Like the Russian soldiers, every set of parents knew there was a chance their child would not come home from this new procedure, or that it just wouldn't work at all.  We just all hoped it wouldn't be us.  We were genuinely scared for ourselves, but we were genuinely scared for each other as well.  At one point last summer, there were 5 families in the hospital in MN with EB BMT kids.  2 of us didn't come home with our kids, but even while our kids were fighting for their lives, we worried and prayed for the other children and their parents just as much.

Someday, there will be 5 families at the hospital with EB BMT kids, but all 5 families WILL return home with their kids.  Someone HAS to make this declaration first in order for it to move from thought, to word, to action, to deed.  Someone has to be bold and brash and just say it will be so, no matter what.

Might as well be us.

Celebrate.  Tomorrow doesn't necessarily follow today.  None of us were even guaranteed today to begin with, so since we have it, celebrate it.

God night.

Here are a few pictures my friend Lynne took when we first got to the cabin on her camera.  It was 55 degrees and windy, which explains why I am bundled up immediately after getting out of the water with two ears that felt like they were about to fall off... but hey, we only had one day there, so.... celebrate we did!

Tuesday, June 28, 2011

June 28, 2011: Back in California...


Well, we made it home today without too much worry.  What a week.  So many great memories.  Good news!  My camera decided to connect to my computer once it got back home to CA.  LOL.  So, I'm gonna give you LOTS of pictures tonight.  Also, after I give you the big scroll o' pics, please comment and tell me if you prefer the slide show, or a bunch of pics down the page.

Let's pick up from where we left off...

Monday:  Ronald McDonald Charity Golf Tournament.

I used to play a lot more golf than I do these days.  Typically, if I get out once a year, it's a good thing.  The funny thing is, my game actually gets better the less often I play.  Can't explain it.  Sure, my chipping stinks, but my putting is still solid, my driving is long and consistent, and my irons are pretty solid, too.  Crazy.  I think it's because I don't think about what I am doing as much when I only play once in a blue moon.  I only have one thought in my head:  "head still."  When I keep my head still, my swing works well, when I don't, it doesn't.  I also frankly expect less of myself so I relax, and being relaxed is so important to golf.  I don't know if you really wanted all that gruesome detail into my game, but there you have it!  LOL.

The day was BEAUTIFUL.  We played at the Tournament Players Club (TPC) in Blaine, MN.  What a pretty course.  My cohorts were a comedy routine in themselves, to which I was only too happy to lend my own comedic antics.  My buddy Spence that we met at Minnehaha Falls last summer helped me put together our foursome.  Spence LOVES to play golf, and we always said last summer that we'd figure out a way to tee it up some time.  Well, here it was!  We had so much fun, it should have been illegal.

I really want to tell you about the generosity at this event.  The fundraising goal for the event was to raise $25,000.00 that day on the spot in additional donations during the program at lunch.  People were standing up at $1,000/$500/$250 a pop and just lining up to donate.  A gentlemen who will remain nameless at his request walked up to the organizers and quietly said that after the lunch program, if they didn't hit $25k, just let him know how much they were short, and he'd cover the difference.  It was his first time at a RMH event.  Ever.

That is cool.  It is people like that that made it possible for my family and extended visiting family to live in a fully furnished apartment - walking distance from Bella - for over 5 months.  I had a chance every night after dinner to thank the volunteers who gave up their evening and who knows how much of their own money to bring in and prepare my family dinner, but on Monday, I got to thank guys for flipping the bill for the room itself; a thank you I didn't get to make directly beforehand, and a thank they didn't get to receive from a parent.  That's powerful on both ends.  I don't know about you, but on several occasions during Bella's journey, the amount of gifts blessed upon us by so many was confronting to deal with.  Sure it's easy to give, but how easy is it to receive, without having the ability or request to reciprocate?  Getting to at least say THANK YOU on Monday to the other golfers, and the CEO of the RMH house, allowed me to return just a SPECK of the gratitude I hold in my heart for Ronald McDonald House Charities.

Thank you again to all of you that contributed in any way toward either the Time to Fly run or the Golf tournament.  I really appreciate your continued support along this journey.  After dinner with Diana and Norm Hageboeck on Friday night, I'm clear that we've only just begun this journey, and it is beautiful.

Enjoy the pics!

God night.

The old path from RMH to the old Children's Hospital...

Ali and Mark's girls twistin' to the Holy Rocka Rollaz!

Cruise night in North Saint Paul...

Check out my Fabulous guitar socks in honor of Bella!

YAY TEAM PUCK!  Thanks to everyone who ran!

Those are my fabulous butterfly socks... Figured my pants were ridin' a little high, so might as well make 'em knickers and rock the fabulous socks!

Sunday, June 26, 2011

June 26, 2011: Minnesota Continued...


Well, bear with me as I am having technical difficulties tonight with multiple electronic devices... my wireless internet connection is r-e-a-l-l-y slow and my camera stopped recognizing it was connected to the computer, so all the great pics I have from Fri, Sat, Sun are currently trapped on my camera.  boo.

Okay, enough about all that... there is A LOT to fill you in on since Thursday night!  Let's just take it day by day:


We rose early on Friday up at the cabin (feels like a week ago already) to drive back to Minneapolis for a FULL day of activities and festivities.  First stop:  Ronald McDonald House to see Jerry, the house dog. Ali needed a Jerry fix, so we dropped in and said hi to the staff.  It was also cool because I got to meet Charlie Knuth's dad in the hallway!  Super nice guy.  We were supposed to spend Friday with Trisha, Charlie's mom, but Charlie had to have a dilitation done on his esophagus on Friday last minute, so we missed meeting Charlie or spending time with Trisha :(.  After RMH, we dropped Ali off at her pre-school and headed to Noodles for lunch.  Noodles was one of mommy and daddy's favorite lunch spots last year.  This year, they are tearing up most of Washington St (ave?) to put in a light rail, so it was a bit of a ghost town.  It was also rough being back in the neighborhood, given the date.  Friday (June 24) was one year from when Bella began her chemotherapy.  We really felt her loss at lunch and couldn't get out of the neighborhood fast enough.

Next stop, after a coffee pit stop, was our meeting with Children's Cancer Research Fund ( CCRF ).  This amazing organization has gone above and beyond the call of duty in helping to grow PUCK from scratch.  Not only that, but if it wasn't for CCRF, there would be no initial funding for this clinical trial.  They have been in the mix since Day 1.  Rather than just raising money under the CCRF name, we've been working on branding PUCK, so that children undergoing transplant for EB have an organization that is not cancer specific to support them.  Usually, 1 out of every 4 transplant patients at the U do NOT have cancer, but some other genetic disease that they are using a cancer treatment to treat them.

We had an AWESOME meeting with CCRF's Executive Director, their head of Marketing, and their head of IT.  Angelique, Lonni, Jay, and I have been working pretty hard over the past 6 weeks or so to really organize and formalize PUCK so that it is easier for CCRF to see the direction we want to head, so they know how to best support us.  We covered A LOT of ground on Friday afternoon, and everyone left the meeting with a clearer vision of how the parent and its fledgling division can best support each other.  Exciting stuff!

After that, Angelique and I had the unique honor of taking the founding parents of CCRF, Diana and Norm Hageboeck, to dinner in beautiful downtown Edina.  30 years ago, they found themselves in a similar situation as we do.  Their own daughter passed away from Leukemia, and she was (roughly) patient 50 in a clinical trial to save her.  Their friends got together and together they put on an event to honor their daughter and raise some money for research.  Well, 30 years and tens and tens and tens of millions of dollars later, the Hageboecks are still together, still full of passion, and still raising money to give every child who gets cancer a chance at beating it.  They are an AMAZING couple.  So full of life, and SO FULL OF JOY.  Angelique and I felt like we were staring at a future version of ourselves, and we just so appreciated them giving up their Friday night to come have dinner with a couple they'd never met before.  They couldn't have been more gracious.  Hearing their story really helped validate our own.

After dinner, we headed out to North St. Paul to meet up with Ali at the cruise night for classic cars.  Our dear friend Mark Flora heads up a wonderful, authentic 50's rock band called The Holy Rocka Rollaz, and they were performing at this cruise night.  Ali's babysitter met us there, and we hung out with Mark's wonderful family, and had a blast listening to 50's rock and roll over the sound of classic cars cruising up the main drag.  It was a truly "american" atmosphere.  Great vibe; no testosterone or attitude, just a bunch of laid back car enthusiasts hanging out together.

We crashed HARD by the time we got to our other friends' house we were housesitting for and got to bed as soon as we could.


Man, Saturday morning came FAST.  We had to get up at 7am each of the first three mornings here (including Sat) which is really 5 am for our internal clocks, so by the third morning in a row of waking up essentially at 5 am, we were tired!  We got some coffee and got to TIME TO FLY, CCRF's annual race, with about 15 minutes to spare before my 5k race.  That was enough time for me to get warmed up and stretched out.  I wore some knee-high fabulous socks in honor of Bella, and headed to the starting line.  I normally run on a treadmill, so I really had no idea how fast I should run, and I ended up running WAAY faster than I would have if I knew what I was doing.  Ironically, I would have probably posted a slower time as a result, so maybe ignorance was bliss!  My two goals were to 1) not stop running and 2) not throw up.  I felt like doing both toward the end of the race, but pushed through.  I was shooting for 30 minutes, but got a little caught up in the moment and ran a 22:27 and came in 27th out of 366 and 8th in my age group of 30-39 yr olds.  At 38, and having run my last 5K roughly 30 years ago, I am pleased with my time... and I am actually able to walk today!  LOL.  I know also that I was pushing myself for Bella.  I was in a lot of agony at the end of the race, but I kept thinking about all the mountains Bella faced in her short life, particularly sprawled out on a PICU bed for over 3 months.  That image made me dig deeper and not slow down my pace.  When I crossed the finish line, I broke down physically and emotionally and had a good, cathartic cry.

The rest of the morning was adorable and moving.  Ali ran the kids fun run 1k and she never stopped running!  It was the farthest that little princess has EVER run at once by a long shot, but she did it!  We were SO PROUD of her for accomplishing it.  It was a great event, and Ang and I have all kinds of ideas for how to participate a lot more fully next year, and how to have the PUCK booth be THE PLACE to go in between races for kids AND adults!  Stay tuned!

We had lunch at our old hang out: Punch Pizza.  Good times.

Next on the day was my internship partner and dear friend Dayna's baby shower!  Dayna is due in early August as well, and it was GREAT that we happened to be in town the day of her shower!  We headed up to Elk River and had loads of fun with all the other families there.  That was the last event on the docket for Saturday, and we SLEPT HARD and SLEPT IN!


Today, we did pretty much nothing until 4pm, and it was absolutely WONDERFUL.  After an incredibly busy week, we needed some serious downtime, and got it today.  Only thing on the schedule was a BBQ at Mark and Lisa's house which was only a 2 minute drive away.  Easy.  We slept in, did some laundry, watched cartoons, slept some more... it was THE LIFE.

4pm rolled around and we headed over to our friends Mark and Lisa's for Mark's infamous "Beer-Butt Chicken."  I WISH my camera was working so I could show you a picture.  Actually, for those of you old timers who were reading last sumer, you may remember the picture of a whole chicken essentially standing on its legs on the grill.  Yup.  This was round two!  This year was even better.  Ali got to play Littlest Pet Shop and Barbie with their girls and they were in toy heaven.  Ang got to relax on the comfy couch while Lisa worked her magic at the stove, and I sat in the adirondack chair outside while Mark worked his magic on the grill, first with the chicken, then with the vegetables!  What a feast.  After way too much food and even more ice cream, we dragged our comatose, overfed bodies back home for the night.

There has been so much play by play to just cover, that I didn't spend too much time getting deep like I like to do, particularly given the impact days that we just had.  In a word, the whole trip has been bitter/sweet.  There is no escaping the bitter pain and sometimes anger of being back without Bella one year later.  We were "Supposed" to be heading back around this time for Bella's one year follow up.  It wasn't "supposed" to go this way.  We weren't "supposed" to go home empty-handed, nor return empty handed.

However, "supposed to" is just a made up construct.  There is no "supposed to" out there.  It is a myth, a fairy tale we tell our selves when something didn't go as WE planned it... as if we are in control and the universe "should" do our bidding.  This whole cosmic journey has been one big lesson that the events of our lives cannot be controlled, however, we always get the final say in how we choose to react to them.

We always get the last word.

Our last word?  We may not have been able to control the events of Bella's life and death, but we are crystal clear that everything we did with Bella, and everything we do now is so that every other kid with EB has a better shot at life as a result.  In living this way, it has brought into our lives the most amazing people from here in MN to you all around the world.

That. is. sweet.

God night.

(Sorry again for no pics... )

Thursday, June 23, 2011

June 23: At the Cabin Again...


We're back!

It feels SO GOOOOOOOOD being back in MN.  We love this place so much.  It is our second home for sure.  We flew in yesterday, had a couple of calamities along the way ( I thought I left my phone on the plane, they ripped both wheels off my golf bag luggage, and we almost couldn't fit all our stuff in the car when our friend Amanda came to pick us ip from the airport! ) Add a few more things we realized we forgot (we mostly meaning I) and the day was fine!  LOL.

Our good friend and Team Bella 2nd Prize Winner, Amanda Schauer, picked us up, brought us back to her home to spend the first night in town at.  She and her husband Bryce ordered pizza for us, let us spend the night, then lent us their car for a WEEK.  Could they be any sweeter?  Oh, and Bryce let me borrow a sport coat and extra flip flops (remember the additional items I remembered I forgot? - that's a funny line... I remembered I forgot...).  We had a blast with them, their beautiful 15 month old daughter, Cory, their two dogs, Barack and Michelle (no, really.), and their cat, Jones (yes, I amped up the allergy meds).  Jones is hilarious.  He is a dog trapped in a cat's body.  Totally, outgoing, social, he talks with you, and makes prolonged eye contact.  Wish I wasn't allergic to cats.

Today, we returned to our dear friends, Bob and Lynne Boschee's cabin at the lake up north in Nisswa.  When we arrived, it was 55 degrees, windy, and misty.  Not fun, but that didn't stop Ali and I from IMMEDIATELY jumping on the jet ski! We were so committed to getting in the water no matter what, that we even wore our swim suits under our clothes on the ride up!  Well, we weren't on the lake long before Ali wanted to go back, and after a few jumps off the dock myself, I could no longer feel my ears, so it seemed like a good idea to get inside, get dry, and get warm!

Ali and daddy showing off our swimsuit undergarments...

We hit the quaint little town of Nisswa for some shopping and some errands, and by late afternoon, the sun came out, the wind died down and the temperature rose.  I was back out on that jet ski in my SECOND pair of board shorts.  Oh, yes.  I brought back ups.  I knew I'd only get one afternoon to ride.  Last summer, we visited in August, when Bella had been in the ICU for about a month.  The stress level was a ten out of ten.  Riding that jet ski full boar across that lake, I released every ounce of stress I had in my body.  Nearly one year later, when I hit that water on my own with the sun finally shining across the lake in the early evening, I left as much grief and pain as I could.  It felt so great.

This brings me to a quick point.  I have noticed that sometimes, I very clearly choose to use a specific activity as catharsis for my grief. I find that when I do, I really let the flood gates open, and while it is often a very powerful, moving, and often painful experience, it facilitates a nearly immediate release and overall relaxation and re-calibration of my stress tanks.  I think it is really useful to DIG IN TO THE GRIEF in a conscious manner as often as necessary.  Don't just pack it down hoping time will heal the grief.  BIG MYTH.  Since I know I need to release all that intense emotion at some point, it has really paid to pick and choose where and when that happens.  It doesn't mean I am in control of my grief; it pops up when it wants, but I am convinced that because I do actively work on it, the times that it does pop up are less often, less intense, and less long.  That's just my two cents so far, but figured it might be worth sharing.

We also took a peaceful boat ride around the lake before supper, followed by Ali and I fishing for sunnies off the pier.  We caught 3 fish!  I was using Lynne and Bob's boys' "spongebob squarepants" fishing pole, so Ali worked the net so when I pulled the fish out of the water, she immediately got that net under the fish.  We got the fish back into the water within about 30 seconds each time, so it was comparatively painless (I hope) for the fish.  The funniest part was that I was all concerned I was traumatizing these fish.  Well, the big, fat sunny we caught was the FIRST fish chasing the line when I threw it back in!  It was hilarious!  I then figured sun fish probably don't have the most sophisticated memory out there.

It was a great day altogether, with tons of laughter, a little scolding here and there, but mostly just a really good time between friends and their families.  We are so grateful to have the Boschees in our lives.

Alright, I'm probably forgetting something I'm supposed to talk about, but since I'm always the last up, and don't go so far as to write down a to-do list of topics for the blog, good stuff remains in obscurity for sure.  Sorry about that.

Wow.  We have SO MUCH going on between now and Sunday night's post!  Tomorrow, we have a meeting at CCRF where we'll be unleashing more of our 3 year plan, and we also have dinner with the Hageboecks - the founding parents of Children's Cancer Research Group - tomorrow night!  We are so excited and honored to meet them and share a meal with them.  Their story began very much like ours, and 30 years and tens and tens and tens of millions of dollars later raised for leukemia research, their lives have become a living testament to the legacy we seek to leave behind in honor of Bella.  We can't wait to be in their company and learn just a fraction of the wisdom they contain.

Stay tuned for a big update Sunday night as well!  Much love, respect, and gratitude goes out to each and EVERY one of you reading this right now wherever you are, whenever you are!  Thank you for walking this journey with us.  YOUR presence has caused so much of the good stuff you've read about. Thank you again.

God night.

Bella Rocking her two keyboards...

Tuesday, June 21, 2011

June 21: On the Road Again...


Reporting to you live from grandma's house in Huntington Beach: the staging ground for Operation: Take Minnesota!  One of my clients today informed me I really wasn't going on a vacation at all given the detailed itinerary we had.  LOL.  Oh, the Ringgolds.  Type A++.  Hey, whattayagonnado?  I can't conceive of a vacation where I would travel somewhere to do nothing.  I can do nothing at home, and I don't have to travel.  I LOVE doing nothing at home.  If I'm traveling somewhere, I want to see, taste, smell, hear, and touch everything there is to see, taste, smell, hear, and touch since I don't get to be there again, or at least not for a while!  That's just how I'm wired.  I know Angelique isn't quite as terminally go-go-go as I am, but unfortunately for her, I am the social and travel coordinator of the couple!  LOL.

We are staying the night here at grandma's because they are doing a total overhaul of our condo complex's pavement, and we wouldn't be able to leave our car in our parking space while we're away.  So, this way, grandpa can drive us to the airport in our car, drop us off and pick us up, AND the car is safe and not towed!  Once again, THANK YOU grandma and grandpa!  In addition, they watch Lucy, our chihuahua while we travel, so one more reason to start the journey over here.

So far, we have already identified about 5 things we've forgotten.  The book I'm reading, Ali's headphones, my toothpaste, mommy's black shorts, and any books for Ali (she wanted to pack her own fun-bag, so we let her... won't do that again without a little oversight).  I'm confident that number will rise once we open our suitcases in MN! Oh well, that's what Target is for!  They might as well name it Forget.

Alright, since I'm falling asleep in bed typing with one hand while I hold my head up with my other, I think it's time to bid you adieu from CA.

Oh! P.S.  I forgot to share this on Saturday... one of my childhood friends is a rep for Mary Kay, and for a limited time is donating 20% of proceeds to PUCK as well as FREE SHIPPING!  CLICK HERE to visit her online store!  Thanks, Regina, for making this available!

God night.

Sunday, June 19, 2011

June 19, 2011: Happy Father's Day!


Are there any fathers that read this blog?  If so, Happy Father's Day!

Today was bittersweet, which is understandable by all I'm sure.  Angelique surprised me with the best Father's Day gift.  I thought she already gave me my gift, but on the side, she made a photo book through shutterfly of the kids for me.  She made one for me in 2008, and I took it with me on my 6 month internship and it was PERFECT.  Well, she did it again!  Check it out:

This one is great - these are all pics of Ali and Bella at similar ages... columns 1,3 are Ali and 2,4 are Bella.  

After that cool moment, we went to church and lunch.  At lunch, Ang pulled up last Father's Day post from the blog on her phone.  That was rough; some of the day, both of us had completely forgotten, but a lot of the day we remembered well, and there was a particularly cute photo shoot on the bed that evening.

Then, after lunch, I got a phone call from a mom who is getting ready to put her 2.5 year old daughter through transplant.  She didn't know which patient Bella was, so it was a little awkward at first (for her), but we have always said we wanted to share as much information as we could to any and everyone (one of the reasons for this blog) who is considering BMT.  We had a lovely talk, and we shared all the pros and cons of doing the transplant versus waiting... all the same stuff Angelique and I struggled with.  We told her that we don't recommend any child under 2 go through transplant at this time, given that 3 of the 5 children under two DIED.  Not good odds.  We've told Dr. Wagner the same thing, and she shared with me that he is considering excluding any children under 2 going forward.  EB is so much more complex than they first realized.  In non-EB children, under 2 is practically IDEAL for bone marrow transplantation since the immune system is "immature" which lowers the chances of Graft Versus Host Disease (GVHD) from occurring.

After vegging on the couch a while watching the US advance in the Gold Cup (Soccer), remembering how much we did last year, I realized I couldn't sit on the couch all day feeling sorry for myself.  So, I checked the black out dates at Disneyland, and as soon as I saw we were in the clear, I surprised mommy and Ali with a trip to California Adventure to ride the new Ariel ride.  Ali just about jumped through the rough.

6 hours later, we returned home with sore feet, but happy hearts; we had fun.  We needed something new to help relieve the pain of the memories, so we went on two new rides, a new tour, and ate in a new spot.  That really helped.  We hiked back to the tram just as the fireworks were ending in the Magic Kingdom, so we beat the rush out of the park, and made it home safely.  Morning is gonna come early!

Under the cognitive and kinesthetic distractions lies a heavy, sad, and broken heart.  I have a feeling this summer (before Julian arrives) is going to have a lot of pain, a lot of flashbacks, essentially a lot of PTSD.  Pleas say a prayer for us that it isn't too rough.

God night.

Thursday, June 16, 2011

June 16, 2011: Ho Hum...


LOL, I just woke up from sleeping on the floor in Ali's room for like the third night in a row!  I play classical guitar for her to fall asleep to, but the past couple of nights, I play MYSELF to sleep!  I sit on one of her miniature chairs which is really uncomfortable, and inevitably my leg or butt falls asleep or my back hurts, so I lay down to stretch it out and BOOM.  I'm out.

Actually, I kind of like it.  I get to sneak in a couple of extra zzz's and Ali falls asleep and stays asleep with me in the room.  However, nighttime tasks like doing the dishes or blogging get thrown under the bus a little!

Really, there isn't too much to report around here since the big day on Tuesday.  Ali and I spend our afternoons in the pool sometimes meeting new friends, sometimes by ourselves.  Then, we come back to dinner ready for us by mommy, and we all spend the rest of the evening together.  Tonight, we had our last flyer night at Beach Pit BBQ in Old Towne Orange.  Grandma and Grandpa were there again with their neighbors.  Sara had to get to-go since Jack busted his elbow this week!  Say a prayer for both Jack and Sara that his arm heals fast and that she gets the energy and support needed to help a 7 year old boy deal with a cast for half the summer!

Okay, back to dreamland for me... I can hear it calling me back, "Tim, where did you go?  We miss you! Come back!"

Okay, okay, I'm coming! ;-)

God night.

P.S.  As you know how important Bella's pictures are to me; I figured out something AMAZING with my iPhoto program the other night!  I had been skipping over TONS of pictures inadvertently (I won't get into the details... sleep still beckons) so there are a bunch more pics to share of Ali and Bella!  I am so excited about this... Here is a medley I have NO MEMORY of taking!

Tuesday, June 14, 2011

June 14, 2011: World Record Holders!

Courtesy of the amazing Sara Cooper... 


Well, it's official.  Ali and I are in the Guinness Book of World Records.  Today, we participated in the world's largest swim lesson!  No joke!  We joined over 25,000 swimmers in 16 countries for a world-wide simultaneous swim lesson!  CLICK HERE for more info.  Since I'm sure you're really dying to know, so I'll tell you...

... yup, it feels really cool to be a world record holder.  LOL

There were some cool moments, like teaching Ali next to 1984 Olympic silver medalist John Mykkanen, and having 4 time gold medalist Janet Evans giving us tips on floating.  However, when 7-time medalist Jason Lezak walked in... that guy is like a thoroughbred horse... he's HUGE!  THAT was cool.  Totally down to earth, too.  Anyway, it was a lot of fun to be a part of something so fun, and the owner of Ali's swim school, Johnny Johnson, is just about the sweetest man you'll ever meet.  There were 2 and 3 generations of families there in the water today, a testament to the family atmosphere that Blue Buoy Swim School permeates in everything they do.

That's me and Ali next to John Mykkanen...

Janet Evans holding the official clock...

Jason Lezak dwarfing Johnny Johnson... love you, Johnny!

(These three pics courtesy of the Blue Buoy Fan Page on Facebook...)

CLICK HERE to see the most inspirational photo of Johnny and his granddaughter, Emma in the pool together.  EVER TIME I make eye contact with Ali underwater (albeit through goggles) I think of Johnny and the bond in this picture.  It has completely turned me into a swim daddy.  I didn't have a pool growing up, and didn't spend too much time in them or at the beach.  We've had a pool at our complex since we moved in pre-Ali, but something about the past two years living with then losing Bella has taught me not to take this amazing opportunity for granted.  Also, Ali missed out on the pool for two consecutive summers - immediately after Bella was born, then last summer because we were in MN, so BOOM, she's 5, and really needed some serious water safety catching up to do.

Courtesy of Sara Cooper... the rock star world record holder...

It is HARD going to lessons with her, since Bella used to come with us last spring, and every time I am at the school, I just feel Bella's absence so strongly.  However, Ali is STILL HERE and needs her daddy and needs to be safe in the water, so I deal with the pain each time I'm there... what else am I gonna do?  I call a friend when it hurts and talk about my feelings and move on.  I was avoiding going back for too long at Ali's expense, frankly.  So this is one of those times I just gotta deal with it as it comes.  I saw one of the moms I used to hang with during Ali's lessons last spring today, but I just couldn't go up and say hi.  I just didn't feel like having 'the conversation,' so I opted not to.  No biggie.  We're there, and that's what's important.  I don't have to be Social-Guy ALL the time!  LOL.

In other news, if there are any blog followers who are big golf fans, I'm teeing it up for Ronald McDonald House Minneapolis in just under two weeks at the TPC in Minneapolis!  I'm really excited to play the course, support our home away from home last year, and spend the day with my buddy Spence!  We're gonna have a blast!  If you would like to contribute, I would greatly appreciate any support.  I have a $300 pledge to meet and I'm only at $75 so far!  Here's the link to contribute and thank you for your support!

Last plug of the night:  if you live in OC, Beach Pit BBQ in Old Towne Orange is doing a whole flyer week for us RIGHT NOW!  I've done a horrible job promoting our flyer nights on the blog - mostly because so many readers and commenters aren't from OC - but that's no excuse.  I think it's because we have been on a never-ending fundraising marathon for what feels like forever, and honestly, I'm tired of asking for money.  Just writing the above paragraph about golf was like, "I gotta tell people about this, but, ucchhh, I feel like such a broken record right now!"  Thank you all for enduring my non-stop pleas for money.  Sometimes, I'm really fired up about raising money, and others, I'm just sick of reading my own words.  Thanks for supporting me through it all.  I really appreciate it.  I really, really appreciate it.

God night.