Showing posts from July, 2013

Updates on the Mess Fest - Music, Activities and More!

The Mess Fest is just over a week away, and we are expecting a big turnout.  I just know that Ty would be SO PROUD!  Before he passed away, he wanted a huge carnival party for his fifth birthday.  We bought all of the supplies, but we never had the chance to give him that party.  Well, this is going to be the type of "carnival" that he dreamed of.  A true MESS FEST.  I just can't wait to see so many kids having fun and getting messy in honor of Ty and all the poor kids like him who are robbed of such opportunities due to childhood cancer and other disabilities.  Thank you so much to all of our friends who will be able to attend!  And a special thanks to our friends at Kiwi Country Day Camp for being such a benevolent host.  The event will have all of the following, and more - so be sure you come prepared for a fun-filled day and bring a swimsuit! swimming paddle boats muddy puddles at the MUD PIT arts and crafts (including splatter paint and glitter) whipped cream

Team SuperTy Rocks!

So much has been going on.  A lot of it has been normal life and a busy summer, but a lot has also been planning for the big Mess Fest (12 days!) and trying to pull together some ideas for spreading awareness starting September 1 (for pediatric cancer awareness month).  This is why I haven't had the time or the energy to post as often.  I look forward to the day that things resume to a bit more of a normal pace so I'm not so overwhelmed.  Besides, writing is a therapeutic reprieve for me so I am not as mentally healthy lately as I want to be.  I need to feel that "release" when I am able to just throw my thoughts down on virtual paper!  We had a great turnout for the Miles for Hope 5K to benefit the Children's Brain Tumor Project.  Thank you so much for all those that donated and all of those that ran for Team SuperTy!!  It was truly a great day for a great cause.  Tara and Danielle - I am so sorry we couldn't find you for this picture!  I hope you know how

Choosing to smile through the rest of this painful life

I hate the phone and I hate myself for always scrolling through the countless messages when I should be enjoying my time with Gavin or whoever I’m with.  Little Henley Bee passed away yesterday morning.  I was on a lunch date with Gavin when I checked my phone and I couldn’t stop myself from crying at the table.  I asked Ty to send her Mommy an entire window full of ladybugs today, like he did for me the day after he died and like my young cousin did for her mommy the day of her funeral.  A friend recently sent me the pages from a memoir she was reading where the author tells the story of her nephew that died at a young age from neuroblastoma.  She said that family gathered and stood paralyzed around the white coffin before he was laid to rest.  Then a swarm of ladybugs flew in and landed on the coffin.  The young children in the family started laughing and jumping around chasing the ladybugs.  “I saw this as a sign from God that he was welcoming Charlie.  And in the smiles of the ch

Who do you Stand Up for?

Last night, Lou and I attended the Home Run Derby and proudly stood up for Ty.  Thank you, Stand Up 2 Cancer, for making ground-breaking discoveries in cancer research, and for putting them into the real hands of cancer patients so quickly and with so much promise.  I look forward to the amazing things your Pediatric Dream Team will discover!  The TLC Foundation is so proud to support this organization. When the entire stadium stood up for a moment of silence, everyone holding up a placard in honor of a loved one, I just couldn't help by cry my eyes out.  It was breathtaking and beautiful and oh so tragic.  I only wish the placards were larger so I could have covered it with names.  Aunt Mary, Aunt Connie, Annemarie M., Bernice F., Bill K., Mike M., Debbie M., Amanda D., Rosemary S., and those are just some of my friends and family who have fought this demon.  Then there are the kids I have met, followed, read about.  Oh my God!  Sadly, there isn't a placard big enough. 

Max, Mckenna and Talia Joy

I have been offline for over a week!   Sorry I’ve been so out of touch but it has been so busy - with both work and with the long holiday weekend – I just haven’t been able to write.   Nor have I been inspired to write about anything in particular until today.   A couple of days ago, I heard the terribly sad news about Talia Joy Castellano.   She probably won’t be with us much longer.   She is a light and a love and a beautiful soul.   She has fought Neuroblastoma for more than six years, and I have been following her fight for years.   She created a You-Tube channel where she bravely sits in front of her web cam and forces viewers to see past her bald head and instead fall in love with her energy, her spirit, her sense of humor and her incredible talent as a make-up artist.   She has been an inspiration to thousands of other young girls fighting cancer, and she even appeared on Ellen with the grace, dignity and maturity of a grown woman.   She is only 13 years old and she isn’t all