I had one of my worst nights of insomnia last night.  I watched the clock until it was light out again, rolled my tired soul out of bed and poured a cup of coffee.  I give up trying.  Hopefully tomorrow night will be better. I just couldn't stop thinking about the fact that almost one year has passed (IMPOSSIBLE), and I couldn't stop staring at sleeping Gavin next to me and replaying our conversations in my head.  The tears were endless. Gavin had a playdate yesterday.  This is a very rare thing and I was so happy to watch him hugging and playing with his little friend.  It was simply adorable (until we came downstairs to find popcorn covering every inch of the room.  Popcorn fight when we weren't looking!!).  He had a lot of fun.  At one point I heard his friend ask, "Do you have a sister?"  Very easily, Gavin answered, "No.  I have a brother.  Just a brother.  But he died." "He died!?!?!  MOM!  ...

Some days I just don't want to live my life without him in it I haven’t been able to update the calendar in my kitchen since July.  Every two months, I erase and write in the upcoming months, filling in the birthdays, anniversaries, appointments and other plans.  That means I was supposed to write out August and September by now.  But I can’t bring myself to do it, just as I couldn’t bring myself to erase that same calendar for months after losing him.  In those eight weeks, it shows our life before we knew Ty’s cancer returned – with a hopeful “first day of school” written in – and then “Ty is 5!” written happily, a little square on the wall that I would often stare at in disbelief until I finally found the strength to erase it.  Of course, I took pictures first. It looks like such a normal family calendar, until you look a little closer and see that Hospice was coming by one day in September for our orientation.  MRI isn’t a common thing to be ...

When Ty first got diagnosed with cancer, he was 2 years, 10 months old.  We adopted phrases around "fighting" and nicknamed him "the little fighter."  This name still rings true to Ty.  He continues to inspire others to fight on, just as he did.  Back then we dreamed of triumph against the evil monster that grew inside him for no good reason at all.  We thought we would win.  Today Lou and I still dream of triumph.  A very unfair and different kind of triumph, but nonetheless, we still dream big.  We want to DO SOMETHING to help change this.  But we can't do it alone.  And - thanks to people like you - we aren't.    Copied below is an excerpt from a letter I received in the mail last week.  It is a true testament to how Ty's story will continue to inspire others long after he's gone.  I promise you that he inspires and will continue to inspire me each and every day.  "Just after meeting you at the f...

To say the first ever MESS FEST was a success, would be an extreme understatement.  The event was already a success when we sold 500 tickets in advance - I was shocked and overjoyed. It was already a success when I stood in the pouring rain Friday night with a crew of incredible volunteers raking mud, unloading supplies, setting up stations, moving tables, and lifting box after box after box.  I don't know exactly how many people showed up, but I do know it was well over 1,500.  We had 1,500 general admission wristbands.  I planned on counting the leftovers to subtract and figure out how many people attended.  Never did I imagine we would run out before 1:45pm (the event was from 11 - 4)!  People just kept coming and coming.  We had cars backed up for over 2 miles just waiting to get into the incredible Camp Kiwi.  We had 80 volunteers on rotation for the event.  I was planning for anywhere from 500-700 guests.  W...

You can imagine the shock when I saw this incredible tribute to Ty and the TLC Foundation on the front page of The Journal News! It is a wonderful article, and the video posted to lohud.com is perfect http://lohud.us/19NpAyQ .  It really tells our story with a sense of kindness, compassion and familiarity.  I am so grateful to Marcela and Seth.  Marcela, for taking the time to truly understand the scope of what we are doing at the TLC Foundation and why we are doing it, and to Seth - who was with us back in September and so very compassionate - for pulling together a fitting video that shows how much he cares about all we have been through.  The article was trending as the most popular story on the site all day!! With only three days until the Mess Fest, my excitement (aka STRESS) has been through the roof!!  I am just so happy that this is all coming together.  I look around the office at all of the signs and the boxes and the TOYS and I can't belie...

I was driving Gavin home from camp and he was talking away in the backseat.  I was preoocupied about the upcoming event (just 4 days away!!!), so I was only half-listening until I heard Ty's name and I asked him to repeat what he was saying. "I am going to be a space man.  And when I'm a space man I will have a rocketship.  Like Ty's rocketship.  And when I am a space man I am going to fly all the way up to the brightest star and GET TY OUT!  Because Ty is not sick anymore."  That just might be the best idea in the whole world.  I so want him to go and get Ty from that star, too!  More than Gavin will ever understand. I love that Gavin knows Ty is in the brightest star.  I love that he remembers going to see Ty "take-off" in his "rocketship" that one time (aka - the hyperbaric oxygen chamber).  I love that he wants his brother back and I love that he said it as though he was going to rescue him.  As he could pluck him right...

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...