Showing posts from June, 2013

Everybody has a story

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  who has had it pretty easy, but who thinks otherwise and chooses to whine

Ty was here

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 Sloan Kettering I stopped in my tr

Father's Day Hurts Like Hell

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 Ty was at times, and only now when we look back at the

The Muddy Puddles MESS FEST

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. 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 for Friday (a social media campaign

Where's Ty?

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 fundraisers to juggle, and because we returned to L

We love Gavin so so so so so so very much

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 their love more based on the number o