Sunday, November 6, 2011
Well, we're back home, reunited with miss Ali and our pets. Ali missed us and vice versa!
It was great being back in Minnesota. It is our second home for sure. It was great to see new babies, see old friends, even one of our friends delivered their first born yesterday! Congrats, Jeremy and Renee! However, that was all side helpings to our main reason for going...
... date night!
LOL. Just kidding. Although, it was our first date since Julian was born! Thanks again to Ali's teacher Lanai, who has become a good friend, for coming to the hotel and babysitting Julian while we wined and dined downstairs. Dawn of a Dream has been held at this historic landmark in Minneapolis called "The Depot" for the past several years apparently. It has two hotels, an ice rink, and an indoor water park, all in downtown Minneapolis. It's a beautiful old property, and from our window we could see the Stone Arch Bridge, another one of Minneapolis' landmarks that spans the Mississippi river.
It was a grand event, and I FORGOT MY CAMERA upstairs in our room! I had it in my pocket, but then I handed it to Lanai to take a picture of us with Ali's toys before leaving, and didn't take it back. Ali gave us two of her toys to help keep us company while she wasn't with us, and I promised I would take pictures with them in Minneapolis to show her what a good job they did taking care of us...
I snapped a couple of pics with my camera phone, but they mostly came out really blurry. Luckily, Jay Mooreland took this video of my 60 seconds in the spotlight (literally). They had a TV camera on me and the three guests each spoke from their chairs with their faces splashed up on the giant screens. It was weird because I couldn't see anything due to the blinding light in my eyes, and I couldn't really hear myself, because a split second after I spoke, my voice was reverberating around this giant converted rink across the PA... it was weird. I just pretended (upon my amazing wife's encouragement) that I was in the shower rehearsing, like I did earlier that evening. Here it is...
What was really special though, was when Dr. Wagner got up to speak, he referenced me in his speech, and he named all the EB angels who have earned their wings in the study BY NAME, one at a time. What makes this so special is that he wasn't mentioning cancer patients' names, he was mentioning EB patients' names, and this is a fundraiser for Children's Cancer Research Group. Lonni and Jay Mooreland, and Ang and I got to hear our little girls' names mentioned to 850 people, and we were so proud of our little girls, but also so sad to hear their names be part of that list.
As I looked around at the amazing decor for this event during soundcheck, I saw an AWESOME picture of Charlie Knuth. If you don't know his story, you can READ IT HERE on our website. He is truly one of the great success stories of this evolution of bone marrow transplant. And while I am so happy for him and for his family, part of me wished it was Bella's picture up there. I told Ang I felt like Jesus in the Garden. I just wished that the cup could have been passed over us, but given that it wasn't, it's our job to stand in our faith and be of service to God and to all the kids and families with EB present and future, and keep writing, traveling, speaking, hosting fundraisers, until that one day where, like I said above, EB kids outlive their parents.
I had a parent come up to me last night whose child is a cancer survivor, and he thanked me for all we are doing in honor of our daughter. He gets it; because of the millions of dollars the Haeboecks have raised over the years, his child was the beneficiary of that research and is here today to enjoy whatever life has to offer.
There are a lot of things that money can't solve, but there are also a lot of things that money can. Last night, CCRF raised $970,000.00. In. One. Night. Tomorrow, the researchers at the U will literally be going to work on a new treatment that they have been waiting for funding to pursue that will be a game changer in the leukemia battle. It is really exciting when you can see how and where the funding will go, how it will make a difference, and how this research sets a new baseline for treatment and care. It's not like a consumable experience... it forever changes the way we care for our kids. I never really thought about it all like that until last night.
What these new treatment breakthroughs REALLY MEAN for families of newly diagnosed kids is HOPE.
Hope changes EVERYTHING.
Man, it is good to be in the business of creating hope for others. THAT is a good use of time, money, and energy.
We also got to see a lot of Bella's treatment team last night for the first time since we left the hospital last October. That was really sweet; they couldn't have been nicer (I avoided Dr. Doom, though). They couldn't believe their eyes when they realized it was us! They were really inspired by Bella, and inspired by us coming back to still support them, despite what happened to her. I work in an adult hospital and see my patients die every week, but for the most part, they are fully grown adults who have lived lives, had families, etc. These docs take on rare and incurable childhood diseases and while trying to crack the code, watch children die while they're at work. How they come back to work the following days, weeks, and months and not give up till there's a cure... they inspire us.
Last night I saw the partnership between doctors, parents, their friends and families, and the community at large. It was one big family united to make a difference in the lives of children. That's a pretty inspiring bunch to go hang out with.
The other piece that was equally inspiring was the ages of those in attendance. There were two generations there, our parent's and ours, and ours was just about in equal attendance. What I saw last night were thirty-somethings already involved in philanthropy. Diane Hageboeck said it best to me last night when she said, "Tim, no matter what, you have to make it fun." She was talking about the entire journey. If you make it fun, people will want to come and play. I like that. I can be pretty intense and serious at times (uh, understatement?), but inside, I'm just a big kid walking around in grown up clothes and a grown up body. So, I really like that mantra.
I also gotta tell ya how GREAT Julian was the whole trip! He was a CHAMP! He was totally quiet on both flights, happy for the most part, slept for a lot of each flight... just easy going. He slept in the hotel room in a pack 'n play as if he was home... only got up once each night for a bottle for maybe 30 minutes! CHAMP! Thank you, J-Man for being so AWESOME on your first road trip!
Alright, I'm beat. Time to go to bed.