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 ...

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 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 welcomin...

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, fo...

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. ...

I learned this the hard way, because I didn't have much of a story before Ty got sick.  But since my life changed so dramatically overnight and I decided to share it publicly, I have been introduced to thousands of stories.  Strangers share intimate details about their own struggles, and I consider myself very lucky to be so aware.  My eyes are open... my heart is open... most people are good and kind and life is really, really hard sometimes.  As a whole, we need to remember that pain can be so toxic it changes people and hardens them.  I have to remind myself of this every time I want to let my anger take over.  Or when I am easy to pass judgment without much knowledge, sympathy or understanding.  Ty would want us to feel sorry for everyone.  To feel sorry for the person who seems harsh or mean, because maybe there was a life-altering event that made him or her that way.  And to feel sorry for the person...

I have written those words in the sand each day.  It makes me feel so good to remind everyone of his presence.  So much so that I wish I had the foresight to write those words all over the place when Ty was still with us.  Of course, vandalism is not cool… but it would be so nice to know that somewhere hidden in each hospital room it reads “Ty was here.”  Somewhere in every special place we ever visited, like the hotel room in Mexico, we etched it into the tiles or discretely scratched it under the headboard.  A reminder of a little boy who was gone too soon, but left an impact.  There was a perfect quote posted to my Facebook yesterday that read: “There are souls in this world who have the gift of finding joy everywhere, and leaving it behind them when they go." - Frederick William Faber Henley Hazel Romine is a beautiful little girl who is lovingly called “Henny Bee” by her family.  When I saw her for the first time on the ninth floor of ...

Poor Lou.  As anyone can imagine, today was a very hard day for him.  He spent his first Father’s Day without Ty in bed for the majority of the day.  Last night we celebrated Father’s Day by going out to dinner with my sister and brother-in-law while my mom and dad babysat all the boys (Gavin and my nephews).  Gavin was so happy all day to be with his cousin, and we all had a great day at the beach.   Dinner was delicious, and we had a lot of fun into the very late hours of the night.  Escaping like that was good for us, but I think it only made the reality of today hit Lou even harder.   Every time I went into the bedroom to check on him he was either sleeping, crying, or looking through the pictures and watching all of his videos of Ty.  I watched some with him, we cried together a bit, and we talked about how it is so hard to look back at all the pain and suffering Ty experienced.  We both agreed that we were blind to how bad T...

Tickets for the Muddy Puddles Mess Fest, August 10 at Camp Kiwi, are now on sale!  You can purchase them at a discount online using the link below, or pay at the door on the day of the event.  http://muddypuddles.eventbrite.com I can't even tell you how excited I am that this event is finally coming to fruition.  It is going to be wild, outrageous and SO MUCH FUN!  Of course, it will be a giant mess fest indeed.  Whipped cream pie tosses, Mud puddle obstacle courses, food fights, splatter paint, giant bubble stations, dirt digs, and a giant fire truck to hose off the kids.  There are also pools, climbing walls, ziplines, batting cages, hay rides, bounce houses and so much more.  Fingers crossed for beautiful weather, but if it rains, who cares - that only means more mud puddles, right? Thanks to our segment on The Doctors , The Muddy Puddles Project is really taking off!  I decided to post five recent photo submissions in honor of High Five ...

Kids are so curious.  They all love Ty so much, and so many children have become really passionate about the cause.  But I am also learning more and more that many kids are confused about what happened to him.  They don't understand how or why he got sick (neither do any of us).  They question where he is now.  They really have such an innocent and true love for Ty that I have come to realize is a testament to the wonderful adults they will become.  Check out these soccer uniforms.  Go Pawling Hurricanes :) I have such guilt because I've been too busy to post in over a week.  It feels like I'm betraying Ty a little when I can't find time to write about him.  I hope he knows that I am thinking of him just the same.  Of course he does, but writing remains an important part of the grieving process and I need to find more time lately.  I've been so quiet this week because the foundation has had a large number of fu...

How much do I love you, Ty? BIG much! How much do you love me? BIG much! Well, I love you big, huge, giant, enormous, Gi-normous, tremendous all the way to infinity MUCH!” Ty had been saying “big much” since he was two years old.  Before he was diagnosed later that year.  He had trouble making the “ch” sound, so it always sounded more like “Big Muh!”  Adorable regardless.  You can click here to see it/hear it for yourself .  This video was recorded post diagnosis, after his speech started to show the effect of the wretched tumor, but it certainly isn't any less adorable.  The same routine of telling one another how much we love them is a little different with Gavin, he has his own thing.  It started with Lou at bedtime. How much do I love you, Gavin? So so very much. How much do you love me? So so very much. Well, I love you so so so so so so so so so so so so so so so very much. Then it becomes a funny competition of who can show th...