Setting The Table

Tonight I am setting the table for four instead of three as I have been this summer.  Tony is home tonight after spending the summer in Chicago and I could not be more happy to have my boys under my roof again.

This will be our future.  A week here and couple of weeks there.  The long summer months of time on our hands is in the past, but the visits during breaks and at the end of internships will be  just as precious.

Welcome home Tony.

The DNC is Coming...

...to Charlotte and today I picked up my tickets (after volunteering to register voters) to attend Obama's acceptance speech on 9/6 at the BofA stadium.  Whether you like him or not what a great opportunity to see our democracy in action.  I am also able as an employee of the Blumenthal Arts Center to work such great venues such as the International Forums, where by the way Madeline Albright will be in attendance hopefully wearing  one of her great pins, and the Domestic Forums.  I will usher the Echo Foundation with the keynote speaker being General Wesley Clark.

Charlotte will be alive with delegates, protesters, the curious, the interns and volunteers.  What a wonderful opportunity that has been laid at our feet .

Education Series for the FAC

Once again I stood in front of nurses, interns, and support staff of LCH recounting our story of Joe and sharing how this impacted our family.  Yet again my voice quivered and broke sharing our history.  I so want to be able to stand strong during that part.  I guess that will take time.

But even with my shaky start an incredible dialogue emerged.  Where and when is the right time to approach families who have had their world rocked to the bottom of their souls.  Should we have Palliative Care be involved at the start for rare cancers.  When do we bring up insurance coverage and the right time to introduce Medicaid or SSI as a supplement to your insurance.   When is the right time to say this will take a toll on your family and your finances.  When do you say to a family in a devastating spiral you need to look out for yourselves, your other children and we are here to offer help.

I do not know all the answers to these questions but I am feeling better that they are being asked.  And that is what Levine Children's Hospital is all about. Treating not only the patient but the family as well and I am proud to be a part of the Family Advisory Council at LCH.

The Thank You's

Every year after Joedance I send  personal notes thanking everyone who donated their time and money to raise awareness for rare and complex cancers.  And every year I write with blurred vision of tears in my eyes.  I get the zip codes wrong, the 9's look like 8's, I write and rewrite the cards till I think they are right for those who have sent money, those who gave their time and talent to make Joedance a success.  These cards are sent to so many people that knew Joe's journey and to those who have just learned of our heartbreak.  I as write these notes the tension that filled my shoulders preceding Joedance starts to lessen, replacing it with your love and willingness to gather every year for Joedance to remember a son and a brother.

I am back

After a small break I am back.  My last post was just before the Joedance Film Festival and I have to be honest with you preparing for this event floods me with memories of Joe and it takes a toll on me.  I am a mess before and a mess after.   So I  left the blogging world to get through this tough time.  And after all of  my distress Joedance was a success thanks to all of you that volunteered your time, your love and your support.  It starts with Julie and Arkon doing the flyer.  Matt and Steven rocked the Joedance Glass Table.  Bert Woodward put the word out to the newspapers, Mollie did the popcorn, Dave and Deb came back from their beach trip to be here to set up the film and John Schwert was on hand to introduce his film.  And you all came to remember Joe and raise money for The Rare and Complex Cancers Fund.

Thank you.