First it was mad cool, or ri donk ulous.  Now it's amazeballs .  Well, Gavin decided to coin another fresh term for something that is really great.  #Indredibaloney.  He had me laughing in the car on the way to preschool this morning.  Where does he come up with this stuff?  I'm not even sure he knew it was funny! So cute.  I think incredibaloney is so superSWAGafragilistic I might have to put it on a tee-shirt.  But seriously he is a funny kid for rizzle .  I thank God for him every day.  His adorable voice alone can make me smile no matter how heavy my heart is feeling. Look at how big he is?  It hurts.  I am not going to get into how much it physically and mentally hurts to watch him grow older than Ty, that goes way beyond words on a page.... I'm talking about the general Mommy hurt you feel when they are growing up too fast and you just can't stop it!  Where did my baby go?  He kept asking me on the days l...

This year, Easter falls just before Gavin's fifth birthday (which is tomorrow! So crazy!).  Knowing all too well how hard it was to watch Gavin hunt for eggs all by himself last year, we are so grateful to our friends Anthony and Yasmine for inviting us to stay with them in Long Beach so Gavin could wake up with his buddies, Eva and Theo, before going to my mom's house for a proper FEASTer.  It was truly a blessing.  It changed everything and last night I went to bed reflecting on a blessed Easter with great friends and family. These days I am trying so hard to embrace each day knowing my life is already fulfilled.  I have been given the greatest gift and learned so much from that little boy who left too soon, everything from this day forward is just a bonus.  I try to seize the day and I often fail miserably, but I will keep trying :) For example - Gavin and Theo are both turning 5 and we later celebrated Gavin's birthday with my family on Easter, so I had to...

Lou has been sick.  He came down with a fever a few nights ago and has since been sleeping in Ty's room to try and keep it from the rest of us. It's sadly appropriate that Ty's room is the "sick" room.  Not at all because Ty was sick too, but because it is a comforting place to be.  When I was pulling down the covers for Lou and setting aside a drink and medication for him the other night, I was a little jealous.  I could barely resist the urge to climb between those SpiderMan sheets myself and sleep in peace for hours on end.  I wanted to feel closer to Ty.  I sat on the edge of the bed and remembered what it felt like to sleep on that tempur-pedic hospital mattress with Ty in between the two of us.  I looked out his window, thinking about how he has the best view in the whole house.  I looked around at all of his incredible things and remembered each and every one of them and why they are so special.  Even the little paper wallet on his n...

HAPPY HAIR Gavin doesn’t understand Gavin tries so hard to understand, but his little mind just can’t comprehend the idea of heaven or spirits and I don’t know how to help him with it.  It’s okay, he isn’t hurting or suffering over the confusion at all, but I wish there was a way to teach him what is so grossly intangible.  He believes that Ty went on a rocket-ship up to heaven and that it is located in outer space.  We never told him any such thing, but ever since he saw the hyperbaric oxygen chamber that one time (we called it “the rocket ship” in an attempt to make it exciting for Ty) that is just what he came up with.  I think it’s because we always say “Hi Ty” whenever we spot the brightest star in the sky, too. Truth is, he also believes there are other places in the universe where Super Heroes are real and where they live.  He’s four/almost five and this is just how his mind works.  Our conversation at the kitchen table today: “Why did Ty ...

I was tired all day yesterday.  I haven't been sleeping well and I guess a number of things caught up with me. Lou had a meeting after work so I put Gavin to bed and ended up falling asleep there for the rest of the night. Maybe that is why Ty finally came to me in my dreams, because I slept so long, or because I was in his little brother's room. I don't know why last night of all nights, but it was wonderful and I have been thinking about it all day.  I want to jump back in and remember every little detail because dreams slip away so quickly.  I want to feel that feeling again as if we are really together, in the flesh. In my dream he was as beautiful as ever.  He was a big boy, and so angelic, just like he looked the weeks leading up to his passing. Dreams are strange and I can't recall everything.  All I know is suddenly, there you were.  I held you. I changed you.  Changing you was so symbolic of the intimate acts of motherhood I engaged ...

The great thing about having a child with a "belly tube" (or a gastrostomy tube) is that we had complete control over Ty's diet.  I was able to make him shakes that were jam-packed with vegetables, proteins, oils and amino acids.  Ty had oral mobility issues, not to mention the outrageous effect chemotherapy had on his taste and his appetite, so most of the time he ate very, very little by mouth.  I don't know what we would have done for his nutrition, not to mention administering his meds, if he didn't have this miraculous device. That being said, he did eat by mouth on his terms.  For example, Ty went through a phase where he loved bacon - I literally kept a box of pre-cooked Oscar Meyer bacon strips in my PURSE for three or four weeks so I could pass him back a strip during our long car rides.  After a month of bacon overload, he never ate it again.  Then there was the "toast" phase where we went through almost a loaf of sliced bread DAILY because h...

So many realities hit me in the face today.  Ty has been gone 17 months today.  I relived him dying in my arms several times today.  Watching his last breaths in my mind as I tried to concentrate on the road between the office and Gavin's preschool. Gavin will be five in just a few short months.  Just after he turns five, he will soon be older than Ty ever was.  He needs all new clothes.  He has grown out of the last pairs of Ty's pants that still fit him.  He can't wear his big brother's clothes much longer.  We need to register him for Kindergarten and even though he has an older brother, this will be the first time Lou and I will ever experience putting our child on a school bus.  Moving on to "big boy" school.  Our youngest, our baby, will soon be our oldest.  He is our "only" child (or, better said, our only child left).  Everything feels so final and all of a sudden it feels like it's all happening at lighting speed...

Life has been absolutely out-of-control busy these past few months.  Busy is always good for me as a means to manage my grief, but eventually it catches up to me.  This weekend Lou went away on his annual snowboarding trip with his friends.  I was so sick of this cold, lonely winter, I decided to take Gavin on a road trip with my besties.  During which, I realized that I really need to watch what I say when I’m driving.  This is something that I imagine every mom can relate to on some level, right? Our first stop was to spend a night with my mom and dad on Long Island.  Whenever I cross the bridge, I undoubtedly run into a world of traffic and it never fails that there are drivers on the road that believe if they haphazardly change lanes, they will get to where they are going faster.  It is so frustrating.  We are all on the same road, going the same speed, and the hyper-active lane changers only put everyone else at risk.  One little brigh...

Before I share Lou's speech, I wanted to share Foundation news.  We are so incredibly proud to introduce Emily Peachey as a new ambassador for the TLC Foundation. Emily stars in the upcoming film The Fault in Our Stars - alongside Shailene Woody, William DeFoe and Laura Dern (based on the NYT bestseller by John Green).  For those of you who haven't read the book yet, it is a story about young love and the reality of childhood cancer.  It is a beautiful and heartbreaking story, and of course it touched Emily deeply since working on the film.  She worked with several cancer patients on-set and was driven to do something!  Many young, up and coming celebrities wouldn't be so caring and selfless, and I find her actions to be so very admirable. We are truly humbled and honored to have her support :) Together we will raise awareness for childhood cancer and make a difference for these kids! The past two weeks have been spent trying to juggle event planning in b...

Cancer is the second leading cause of death around the world, just behind heart disease.   One in four people die of cancer.   Sadly, I doubt there is a person reading this post that has avoided being touched by cancer in one way, shape, or form.    So, I’m not sure we need a dedicated day to remind people about the tragedy that is “cancer” but I do believe that having this day is actually more empowering than it is depressing.   We are not alone.   This is a worldwide problem that isn’t going away.   We stand united, and as tragic as it may be to watch our newsfeeds fill with Placards and ribbons, it is also inspiring.   Awesome, actually.  E ach and every one of the fighters – big and small – show strength and courage, and the network of support from the world around them is as humbling as it is beautiful.   Ty is not the first person I love to die from cancer, and he won’t be the last.   That is such an impossible and hopel...

When my first son was born, I was a quintessential “new mom.”  God gave us this incredible gift.  He entrusted me to take care of this most beautiful baby?!?!  The weight of that responsibility was tremendous.  I wanted to be perfect for him because I never loved anything like that before in my life. I bought every ridiculous and completely unnecessary gadget available.  I actually liked going to Babies R Us and browsing this unknown territory of all things soft and fuzzy (or Buy Buy Baby, even better).  Did I really think that the PeePee TeePees I purchased for $11 were going to spare me from getting pee’ed on once in a while?  I pored over every single thing that went in his mouth, and I beamed with pride over how he just loved his peas and carrots, I must be doing something right! (I didn’t realize that pretty much all babies eat their vegetables when they’re only six months old).  Every tiny little thing Ty did prompted a phone call to my...

There is a beautiful young boy who is fighting for his life tonight.  Justin Miller has been fighting cancer for seven years, and he is only 11.  He had multiple relapses.  His story reminds me so much of Ty, only with all of the ups and downs extending into many more years.  I fell in love with Justin when he was designated an ambassador for St. Baldrick's in 2012, and when I saw his incredible video on the Stand Up 2 Cancer telethon while Ty was home on hospice in September 2012.  The picture of Ty below, with his hands in a heart, were taken at that same time.  Not that I need a reminder, but days like today, when I read about what Justin is going through and how his journey has taken another unfair turn - a really bad one - inspires me to share this event again, because it is a reminder of why we do what we do so passionately. And, because "everyone can give a half a sandwich." as my friend Mary Pallotta taught me.  Although, in this case ...

"Ewww.  Did someone make a poop in this bathroom?" "I don't know, Gavin - you tell me?  You were the last one to use that bathroom." "Hmm.  I don't wee-member.  But I fink so because I see a couple of poop crumbs left." Never, have I ever heard anyone use the term poop crumbs.  I find it so amusing, so much so that - you saw it here first - I went ahead and prefaced it with a hashtag.  This one is right up there with Ty calling Hannford's "HeineyFarts."  Kids are just so funny!  When did my baby become a "kid" anyway?  Where did my baby go? I guess I first realized he was growing up when he announced "My butt has to tell you something," before farting.  Ahh, the joys of motherhood.  Boys will be boys :)  I swear, I promise, I really don't know where he gets this from and NO I don't condone it - although sometimes I do have to hide my chuckle in response to his ridiculous potty humor.  Gavin...

Today we spent the first day of 2014 on the slopes in Vermont.   The cold, crisp air really helped me get out of a funk I’ve been since Christmas. I tried to imagine Ty soaring around the mountain with me, perched on my shoulder – but of course that idea can’t overpower the real longing in my heart, and the feeling of remorse when I consider the fact that here I am enjoying another treat in life that Ty will never get to experience. I know, I know.   New year, new chapter in life.   Moving forward.   Resolve to eat well, be healthy in body, mind and spirit, have more fun, all that stuff.   But for me, on this New Year’s Day, I am stuck on reflecting rather than moving on.   I can’t help it.   The holidays are hard and I’m a little stuck in the past.   Remembering Ty and reflecting on an entire year without him.   How did that even happen?   Gavin has grown so much, I am always asking him, “where did my baby go?”   I haven’...