Showing posts from August, 2013

Insomnia. It's Ba-aaack

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!  Did you know Gavin's brother DIED?!?!"

Life goes on. Whether I like it or not.

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 on the family calendar, but we

The Little Fighter

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 fundraiser in April, I began feeling of

My Dream Come True

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.  What a testament this was to our amazing volunteers who were unfaz

Thank You! Ty would be so proud!

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 is perfect .  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 believe it's actually happ

Outer Space and Instagram

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 out of heaven an