"Maaa-Meeee?" Gavin said waking me up this morning. "Yes?" "I wuv you." "Oh, thank you.  I love you, too." "Maaa-Meee?" "Yes?" "I wuv you more !"  Big smiles all around.  What a way to start the day, right? A new donor gave some very kind feedback on the foundation website today.  "He must have been one amazing little boy."  When I read that, all I could do was smile and think, "amazing is an understatement."  It makes me so proud to hear that kind of feedback.  To know that it is obvious how special my angel baby was and is.  I know I don't need to remind you about his magnetic smile, but I can't resist.  Here he is, waiting for Max and Ruby to take the stage (yes, there was a live show that toured in 2011, we even have the soundtrack and I can sing every word because Ty loved it so much).  This was one of Ty's greatest days.  He was pure beauty and happiness through and thr

I received some new photos of Ty tonight from my friend, Linda.  He's just a baby, maybe five months old.  It was his first mini-vacation -- we took a plane into Cincinnati for my friend's baby shower.  He was such a perfect little baby.  We were so happy.  Never, ever, ever would we have imagined the life we are living now.  He was the picture of health.  Now I look at these photos and I can't help but wonder, "did he have cancer yet?"  Impossible.  Just look at him!  How could cancer have ever happened to this little piece of heaven?  I look at that famous smile of his and despite my pain, I also feel so proud.  We had a busy, happy weekend.  Ty kept me smiling by sending me bluebirds here and there.  Even tonight, when I saw The Avengers take the stage during the Oscars, I smiled for him because I know he would have gotten such a kick out of that.  We LOVE Chris Evans!!  I was happy to see him on that stage (and all of those super cute, super funny, sup

I am doing better the past couple of days.  Very, very busy trying to get The Muddy Puddles Project ready for a Spring launch, but all of that is good and exciting and very rewarding because it is all for Ty.  There are so many people, all of you, who have gotten behind this cause because you have been touched by my angel baby, and that makes my life that much better despite it all.  How can I look at his pictures and not smile along with him.  I cry and ache and long for him, but I smile, too, because he was that special.  I don't have a lot of time for a detailed update tonight because it's so late, but I do want to share with you one short story that is weighing on me.  At five in the morning, Gavin woke me so I could pull him into my bed.  He does this at some point every single night because it is too high for him to climb up on his own.  It has become such a routine, I usually don't even know what time he comes in and sometimes wake up with no recollection o

Nothing new to report.  We are all doing okay.  I just came across this video the other day and had to share.  Ty loved looking through toy catalogs.  Especially because all of his ups and downs had him confined to a bed or the couch most of the time, so this was a fun way to pass the time and keep him smiling.  He picked out so many toys, he told his grandpa "Papa" that he was going to have to "go back to work!" just to pay for them all :)  WATCH HERE ON YOU TUBE

Ty is in every star in the sky.  Every setting sun. The embrace of every warm breeze.  But with all of the hope that I hold in my heart, it doesn't help me escape the fact that I miss everything about him, every second of the day.  Ty, baby, I miss your soft hair.  Your breath.  Your high-pitched baby voice.  Your smell and how your skin smelled different from your hair and your neck smelled different from your feet.  But most of all, your smile.  You went through hell.  More than I have even shared on this blog because yes, your pain over the past two years was that bad.  But you smiled all the time.  Regardless.  You loved it.  You yearned for it.  You truly wanted to be happy.  And you allowed yourself to be happy despite it all. Remember that the next time you think "if only I could be happy!"  Look at how funny Ty thinks this is.  We took all of Gavin's toys and put them on the couch to watch Toy Story with the guys. Ty thought it was the funniest idea in the

Today I received a Valentine's Day card in the mail that said "Ty is alive in so many hearts this Valentine's Day, and I am so lucky to have a part of Ty in my heart..."  (thanks, Deb).  That means more to me than anything else.  That Ty is in your hearts today and every day.  I never imagined that something silly like Valentine's Day would be hard for a grieving mom. I never realized how much candy is out there on Valentine's Day!  Giving Gavin his little present this morning (some spiderman chocolates and a new mini Green Goblin), it just felt so wrong that I didn't have a present for Ty.  I didn't have anything but tears for poor Lou when he came home after dropping Gavin off at school, and then he showered me with surprises like the wonderful husband that he is.  I was shocked that he had put so much thought into this silly holiday, and mad at myself because I hadn't even gotten him a card.  I just didn't care about this day one teeny, t

I have had three very tough days in a row.  That's going to happen sometimes.  I am writing this knowing it will be a short post because I am swollen from tears and fighting a terrible headache from the crying I've done tonight.  But I am okay because I am trying so hard to occupy my time doing things to help Ty, the next Ty.  It has been such a blessing and a curse.  I never want his story to end, but with that comes a tremendous amount of stress and longing.  I don't want to be working on my laptop 12 hours or more a day just talking cancer research and fundraising.  I am stressed out in a way that I have grown to preach against ever since my baby got cancer!  I can't help but feel such an enormous responsibility to make this right, and I just hope I can do something in this meager life of mine, to make a difference in childhood cancer treatments.  But I need to balance that time while practicing what I preach and enjoying my Gavin, and I need to figure that out. 

Just look at this beautiful child.  People always stopped to watch him, wherever we went.  Do you think he knows? Do you think it was weird that Daddy was carrying around his fluids in a backpack?  That he was glad to finally be home from the hospital, but wondered why he still had the needles in his chest?  I can't look at this picture and not want to get inside that head and know what he's thinking.  Thoughts that no three year old should have to ponder, but that I know he did.  He was smart and so in-tune with how Lou and I were feeling.  He could read our anxiety under the greatest disguises.  Thank you all, so much, for being so supportive.  We have our good days and bad.  I've been feeling exceptionally sad these past few days, but it's all so normal.  I haven't seen any signs from Ty, and that just breaks my heart and makes me feel desperate.  I'm overdue, I think.  It's just what I need to pick me up out of my slump.  I did have a few good hou

Oh man.  I guess I curse more than I realized.  I’m always talking to myself like a delusional crazy person and don’t even know what’s coming out of my mouth.  Now I know that Gavin’s ears are always open!  Gavin, sitting sweetly on my lap and reading a book, turned his head to look at me and softly said, “Mommy?” using his sweet, drawn out voice that is usually followed by an “I love you.”  This time, however, it was followed with, “when I’m a grown up, can I say SH*T?”  It was so unexpected, so innocent and so adorable that all I could do was giggle.  I hesitated for a second before I answered, “You know what?  Yes.  When you are grown up, you can say sh*t.  I really don’t care.  Just don’t overuse it or it will lose its significance.  But for now, when you are a little boy, you can’t say that.”  Surprisingly, he didn’t argue.  He was happy with my answer I guess. Sometimes I get caught talking to myself or to Ty, and Gavin will say, “HUH?”  Then I have to stop myself and explain

Whenever we crossed the Triboro bridge into Manhattan, Ty always used to say we were in the city where Spiderman lives. Well, yesterday I had a great day in Spiderman’s city.   I participated in some great meetings where I talked a lot about my Ty (something I love to do).  I had Ty’s locket on; the one that Gavin loves and the one that reads “I carry your heart in my heart.”  Needless to say, I felt him with me everywhere I went.  All day long.  It was such a beautiful day, cold but clear and sunny, so after a meeting at Mt. Sinai hospital I took a walk around the reservoir in Central Park.  When I lived on the Upper East Side I ran that loop often.  I was reminded of how simple and fun my life was back then, but also how I would never want to go back in a million years.  I would rather have had Ty and have to live without him now, then having never had him at all.  I would rather carry his heart “in my heart” instead of holding his hand as long as he existed and I was lucky enough

"I am both happy and sad at the same time , and I'm still trying to figure out how that could be." Stephen Chbosky I think I had a happy day today?  I can't believe I am writing that, but I can honestly say that I enjoyed our sick day today.  Gavin and I had a lot of fun just being together with nothing to do but wipe noses and spend all afternoon in our fuzzy robes.  Even when he put on my necklace with Ty's locket and wanted it open so he could talk to Ty, I didn't get teary-eyed.  I liked watching him try to interact with his brother (until he got a little too rough with the locket and I almost freaked out!).  I did feel bad when he said "but he's not talking back to me," and I told him I wished he could talk back to all of us, but not to worry because he is always with us and listening to us and telling us things in his new and special way.  Gavin doesn't really get that - of course - but he seems okay with those kinds of explanations,

Tomorrow is Stand Up 2 Cancer World Cancer Day. I will be posting some pictures of Gavin, Lou and I standing up for Ty and all the kids. Please help us to support this social media campaign by printing out a placard and posting a picture on Facebook, Twitter, Instagram, etc. Go to http://wcd2013.su2c.org/ to get your own placard, then post your photo EVERYWHERE to help spread the word! Just follow Gavin's lead! (Wow, I'm just realizing how badly he needs a haircut). The foundation website launch got sidetracked a bit because Gavin came down with a terrible cold/fever.  We are all a little under the weather and will have to stay home tomorrow, too.  My cousin came over to spend the day with us today and when Gavin became quiet in the toy room, I peeked around the corner and found him fast asleep on top of his toybox.  Poor baby!  His has his tiny Captain America lego guy nice and close.  So sweet. This is the first time Lou and I had a very sick boy in be

I just want to post a quick update because I don't want anyone to worry.  I am okay, we are all okay.  I don't think I've ever gone this long without writing, though, and I can actually feel the tension getting worse by the day because of it.  Writing has always been my release and I haven't been able to keep up so I wanted to at least tell you why (it's all good). So much has happened this week, and so many times I was compelled to write but I've been restricted because of foundation priorities. It's been an exciting week.  The biggest news will be the launch of the website for the foundation tomorrow.  Once that goes live, you'll see that we have a new landing page for superty.org.  It will still be a clear link to the blog, but there will also be an access link to the TLC Foundation and the Muddy Puddles Project (the website for which is still in the works).  So, that was just a lot of work and I was bogged down all week. We are also looking to