Highlights (mostly!)

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Hello Friends!

Wow, it’s been a while since my last entry.  Thanks for your patience.  I’ll hit the highlights and lowlights to catch you up to speed.  Luckily, this will contain mostly the former!

We ended up spending the holidays in a much more quiet fashion than anticipated.  We were just too exhausted to make the 6+ hour trek to my BFF’s house.  Staying home turned out to be a fantastic choice.  We just needed some R&R after 2012!   As my grandmother used to say, my get-up and go, got-up and went…  We took the kids to Children’s Hospital Christmas Eve.  I know, you’re thinking: “Really?  You CHOSE to go to the hospital?”  We did.  We were so grateful not to be there, that we figured we’d bring some cheer to those who were, while teaching our kids to give back, and be grateful for all that we have (This does not mean that they were cured of their American spoiled-rottenness, but a step in the right direction nonetheless!).

We saw some of our favorite nurses, and our social worker that introduced us to a family who had been diagnosed only 2 days prior.  All it took was one look into their eyes and I was hugging and crying with the mom, while Jimmy did likewise with the dad.  Their shock, grief and overwhelm was palpable, and all too reminiscent.  I think seeing Lulu there, bouncing up and down like a caffeinated bunny was reassuring to them.  Their 4-year-old son also had a.l.l.  Max and Lulu each gave them the $10 they had received from their “aunt” Carrie, to buy a gift for their son.  It was very tender, and the parents took a picture of our kids in their laps, to show to their son later.

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I’ve gone back to working on more photo shoots, and after a rough first day, felt back in the swing again.  The first day was just tough because I had to return to the ‘scene of the crime’, in a way …  I went back to the photo studio where I found out Lulu had cancer, and it was much more difficult than I had anticipated.  I was actually shaking as I drove there, and couldn’t even walk past the station where I had learned the life-changing news.  Ugh.  I was lucky to work with some wonderful models and crew though, and one photographer even brought me a beautiful bouquet of flowers to welcome me back.  That gesture was really big for me somehow.

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After that week, I spent left on my first work trip in over a year.  I went to NYC to work with a new crew, with the exception of my art director/friend.  It ended up being the perfect trip, with a fantastic crew who dressed up every day including a pajama day, hip-hop day (see above – I’m so gangsta, ha!), and pirate day!  Who does that?!?  We all hit it off and ended up going out the last night and having a lot more fun than my head would have asked for the next morning :-).  Oh, and my friend and I even caught a show!  We saw Chicago, and it was her first big show ever.  I swear I had more fun watching her delight than I did the performances!  There’s nothing like your first Broadway show.  She went from 36 to 6-years old as she sat on the edge of her seat, her hands moving from her open mouth to her heart over and over again.

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Lulu missed Mommy lots, but got through the week well.  I was so relieved.  It was very difficult to leave, but it was also much needed time for me to be … me again.

I entered a whirlwind upon my return as we prepared to have a film crew to our house the next day.  Do you remember the poster Lulu was in for Jazz Pharmaceuticals?  After meeting with them, they asked us if we’d be interested in doing more education with them.  They are the company that had the alternative drug to PEG-asparagenase, the drug Lulu almost died from when she had an allergic reaction to it.  We are glad there are companies out there who are looking for alternative and solutions to problems like these, and were happy to work with them.   I can’t say that about every drug company, but they really have a culture of integrity that has been consistent in every person we’ve met there.

They spent about 6 hours interviewing us, and made us feel very comfortable while discussing difficult topics; not an easy job.  Jimmy and I went first while the kids were in another room, then Lulu went solo and didn’t want to perform.  She was so shy you could barely hear her, which cracked me up because she is usually so loud and boisterous!  We all made sure the questions weren’t too pointed for her, as we really don’t want her to recall all the detailed horrors of her journey.  Max had the final interview, and of course nailed it.  That kid!  He answered the questions in his wise-old-young man way.  It was actually good for us to hear him sum things up and know his understanding even surpassed what we thought he comprehended.

More good news!  We will be flying to Palm Springs to speak at the National Sales Convention for Jazz Pharma.  The four of us will be featured on stage as well as in a break-out room for more in-depth q&a.  They want their company to see real faces of cancer, to keep what they do in tangible perspective.  I think we will serve as both a warning and an inspiration.  As we discussed during the taping, we never thought this would be our story, but cancer is indiscriminate.  We feel honored to participate in this way, and feel strongly about raising awareness about childhood cancer.

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This leads me to the lowlight portion of my entry.  Jimmy’s mother recently underwent two back surgeries, finding out shortly after, that he leg had broken just below the hip.  She had another surgery with pins and screws to fuse her leg back together.  She is recovering, but still in tremendous pain and we appreciate any good juju, thoughts and prayers you might send her way.  Her name is Sharon.

Overall, life is feeling hopeful again.  Jimmy is off on a work trip; Lulu is home with a cold, but nothing more.  Hopeful … for the first time in a long time.   I’m trying to stay in the moments, and feel them fully.  I’m doing my best not to think about the last year too much, or the fears of the future.   I’m remembering my previous entry on this topic:

Sit in the moments like a jazz musician sits in the pocket, never before or after the beat, behind or ahead of it.  Enjoy the sweetness of each note as it plays out.

Did I just quote myself?  What a dork.

Love,

a.l.l. of us

 IMG_2322 Oh, Mom …

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