May 9, 2011: Getting Closer...

Steve's Heavenly Brunch... (I brought the fruit salad... the tough part! LOL)

Heaveno!

I hope everyone had a great Mother's Day!  We did for sure.  We started with breakfast for Ang and Ali, then headed over to Ang's brother Steve's house where he had Mother's Day brunch planned for his wife, Dina, Ang, Grandma, and Dina's mom.  Normally, Dina cooks some pretty amazing stuff, but Steve went above and beyond!  I told him that he really got himself in trouble, because now the gig is up; everyone knows he can cook!  He's gonna be expected to cook more than once a year now.  Should have just stuck with the grill and catered.  Oh well.  All joking aside, it was an exquisite meal!

After brunch is was POOL TIME!  I have been taking Ali to the pool at least 4x a week lately and we've been working hard catching up for two lost summers.  Well, it really showed!  She was an absolute FISH in Steve and Dina's pool, and no one could believe how well she was swimming.  In the past week or so, her stroke has really locked in, and she can swim across the pool holding her breath.  This is a huge breakthrough for her, and you can tell she is really proud.  It's cute.



Ali, daddy, and cousin Wil...

Ang relaxed poolside with her mom while the rest of us got some play time in the pool.  With Ali's little cousin Wilson being an absolute water baby as well, the three of us had more fun romping in the water together.  It was just about the cutest thing in the world.  I honestly have to say that watching Wil's and Ali's faces under water (we all had googles on) chase me was the highlight of, well, a long time.  There was just so. much. JOY.  It felt really good.

It's those moments that are the cups of water in the grief marathon.  Those moments where everything is okay, and the moment is so awesome that there is no past and no future... there is just that moment.  Bliss.  Those moments help me deal with the treadmill moments, or the moments when I read, like today, of another EB child that earned her wings yesterday.  11 years old.  Sometimes, the fire to raise all this research money dwindles in our exhaustion and grief.  Right until hearing about that little girl.  It reinforces our passion for our new vision, that 10 years from now, there are various treatment options, and no child has to die from this disease ever again.  I figure the 10 years are going to come and go either way, we might as well have something to show for it!

In other news, Team Bella has raised over 6,000 to date!  We are so proud of and grateful for our members!  Angelique made a great point in her weekly Team Bella email when she wrote:

Sure, we were shooting for more but let me give you an idea of what that $6000 can do.

That money can...

• Pay a few months salary to a technician in Dr. Tolar’s lab.
• Pay for Mesenchemyl Stem Cells for a patient whose insurance does not cover this therapy.
• Pay for data collection necessary to get new therapies approved by the FDA and other agencies.

I'm going to jump around a little more here...  In other Ali news, today she had her kindergarten assessment!  Get this, I walked over to her preschool, picked her up, and we walked to her elementary school together, did the assessment (which she ROCKED) and then walked back to her preschool, then I walked back home... all in southern California!  I know!  Seems like a total big fat lie that you could walk that much here!  LOL.  Seriously, in the little neighborhood we live in, we are really lucky to have two shopping centers, an elementary school, three parks, and a community college (where the preschool is) all within walking distance.  Ali is so ready for kindergarten!  When mommy asked Ali how the assessment went, she replied something to the effect of, "They wanted to see how smart I am."  Awesome.  I tell Ali she is smart all the time and have for years.  First, I think she is, but second, I want her to know I think she is, and third, I want HER to think she is.

Lastly, this week is a big week for us down here in PUCK - SoCal.  We have TWO planning meetings for Bella's Bash.  We are so excited to share that Molynlycke Healthcare is going to sponsor the event!  We just love everyone there; they have been SOOOOOOOO good to us since the day they found out about Bella in the NICU.  Jim Wetrich, the President of their U.S. Wound Care Division will return an email to me on a Sunday morning.  I can't tell you what that means to us - we literally feel loved by a company if that is even possible.  It seems that right now we have good news just about every single day regarding the event from volunteers confirming to silent auction and opportunity drawing items being donated, to the myriad details getting ironed out.  We are less than two weeks away!

In other PUCK news, Ali's "Promotion" is Friday, and the school is having a big carnival afterward.  Ali's teacher gave us a booth at the carnival to set up our PUCK stuff to promote Bella's Birthday Bash!  for free!  So we get to meet all the other parents in the school, share our story, and give them a flyer for next weekend!  I have also been asked to speak at the annual teacher appreciation dinner as the parent from the 4-5 year old class next Friday before the Bash.

Last but not least, my friend and one of ABC's Secret Millionaires, James Malinchak, is hosting a 4 day conference in Los Angeles this week and has given me the green light to share our story on his stage and allow me to share the Text to donate campaign with his audience to raise money and awareness for PUCK!  There will be over 500 people there, including a few celebrities like Dr. Bill Dorfman from ABC's Extreme Makeover and Sir Anthony Hopkins!  Today, I spent most of the day in the office writing exactly how I want that 10 minutes to go.  With the text to donate campaign, someone can text up to 6 times for a total of $30 a person.  There will be 500 people there, and I WILL be instructing them - with cell phones in hand - how to be a part of a cure to a childhood disease!  I'll be there Thu/Fri am, Sat, and Sun sharing our journey both on stage and off.  I'm hoping that either James or one of the celebrities will match whatever the crowd donates!  I have seen it happen already once, albeit with smaller attendees, but how could you NOT want to get involved with this if you've never heard of EB before?

Woof.  This was a long post.  There's been a lot to share.  The daily momentum of Bella's Bash has put Ang and I into regular emails, calls, and conversations daily, and the communication and teamwork has just been great.  Our teamwork with Bella was amazing, and it feels like we are getting that rhythm back once again to honor our little girl.  Man, Bella continues to bring out the best in us.  I guess, "Bella's Blessings" just keep continuing to be so appropriate to describe it all.  Thank you so much for still sharing in its joy with us.  We love you.

God night.

P.S.  My nephew Wilson LOVES Johnny Cash.  How much?  Look below.  He sang Folsom Prison Blues followed by Ring of Fire.  He's 3...

And last but not least, Bella playing my drum with her foot... then her hand...