Tuesday, July 3, 2012

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


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.


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, 
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.


  1. I enjoyed reading this!

  2. The power of the human spirit never ceases to amaze me! We go through so many things in life, but somehow they lead us to meeting people and seeing new places that we would've missed otherwise. It looks like a great trip!

  3. SO SO SO happy to hear that you all had a wonderful trip with wonderful people for a wonderful cause!!!

  4. Goosebumps when I saw the numbers on Facebook!
    Love all the pictures! Julian is so big I can't handle it!!

  5. Omg I feel the same exact way about fishing for "fun.". I'm glad someone else agrees! Those poor fishes sore mouths.

  6. Hi Tim: I am still here and reading your blog. I have to keep up on your amazing family. It sounds like you guys had a great time and I am soooo jealous that you got to meet some Eb families.
    Thanks for all you do to help find a better way to treat this awful disease. Ali and Julian look so happy and Ang looks fantastic. You are so blessed my friend. Hope to meet your amazing family one day. Love and Peace Leah and Tabby's Nana

  7. I love that the EB community is family even when you haven't meet in person! Very impressed with the $$$ raised on the race! Way to go! I can just imagine Bella looking down and telling others in Heaven, "that's my family!"

    Kim M
    Waterford, MI

  8. What an amazing week!!! You all did SO much good and got to have SO much fun in the process...that is the way life should be always!!
    Way to go Team PUCK!!!!!
    The EB community is so amazing and supportive to each other. You have all been through so much but never seem to stop holding each other up regardless of your own situations or circumstances. Just absolutely amazing! Thanks for letting me share it, even if it is from afar :o)
    Blessings from Kelley in MO

  9. Way to go, Ali! I'm so glad she was able to finish (with a little help from Daddy). I sponsored her, and I'm thrilled to see that picture of her crossing the finish line.