Tuesday, March 25, 2014

Finally, I dreamed of you

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 in every day because even in my dream you were lying down and unable to move.  You spoke to me, but only when responding to something I said or answering my questions.  It was very slow moving, like time was standing still, and  I can still hear that little whisper in my ear.
"How do you feel?"
"I love you so much"
"I wub you"
"Can you stay?"

He didn't answer.  The dream went on and I can't recall exactly what else happened or what else we talked about, I just know that every time I asked him the same thing... "Can you stay?" he didn't answer.  It's the last thing I can remember before Gavin woke me.

There is so much more I want to ask him.  I wish I could go back.

Sunday, March 23, 2014

Blue Lollipops

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 he was ravenous for buttered toast (this was during a spell on Dexamethasone - an evil little steroid from hell).  And strawberries.  One of the only things he would eat straight into his last days.  There was only one ever-present "favorite food" that followed Ty throughout his entire journey. The BLUE LOLLIPOP :)

I don't think it was so much the taste of blue raspberry that had him so hooked, but it was the incredible fun he had showing everyone his blue tongue, and lips.  Sometimes even his teeth turned blue!  In fact, once or twice his blue lips alarmed nurses to "Call Respiratory" because they feared he was having trouble breathing. Lou and I found that amusing, but we could understand their concern when he was otherwise resting so peacefully in his hospital bed.  When you're stuck in a situation like we were, we chose to laugh instead of cry as much as we possibly could, and Ty's blue lollipops certainly inspired hundreds of smiles during our most difficult days.  

I was recently surprised by a letter from a young girl that I received in February.  Riley seemed to understand this better than most, and we hadn't even met yet.  She has decided to honor Ty and the TLC Foundation as part of her Mitzvah project, and when I read her letter, I had tears in my eyes.  It was one of my proudest moments.

Hi, my name is Riley. I'm 12 years old and my Bat Mitzvah is this October. Recently I donated my Hanukkah money to The TLC Foundation. I have followed your family's story for over 3 years.

When a girl is Bat Mitzvahed she has to complete a mitzvah project which is a form of community service. For my Mitzvah project I would like to help raise awareness about pediatric cancer. These are the goals I have for my mitzvah project:
- Tell 1,000 people about Ty’s story by October 12, 2014
- Raise $1,000 for the TLC Foundation by hosting events to raise money and awareness for pediatric cancer.
- Participate in at least 4 events to raise money and awareness for pediatric cancer.
To learn more about The TLC Foundation and how to get kids involved

If possible I would like to discuss my goals with you or someone from the foundation. Thank you in advance for your time.


This incredible introductory letter has since evolved into an amazing campaign called The Blue Lollipop Project.  Riley purchased thousands of blue lollipops and she is using them as a vehicle to spread awareness for childhood cancer while sharing the sponsored lollipops with children at various local hospitals.  In fact, she will be heading down to Memorial Sloan Kettering this week and contributing to the very same Friday Night Candy Cart that Ty so adored.  It was one of the few hospital activities that was guaranteed to make him happy.  The Candy Cart every Friday night, and Bingo every Tuesday.  It didn't take much to make Ty smile despite everything.


Princess Warrior Brynlee was one of the first recipients to enjoy the treats, and we couldn't be happier to see her showing off her blue tongue with pride :)  Thank you, Riley.  Kids amaze me every day.

Monday, March 17, 2014

17 months gone and today was a hard, hard day

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.  I couldn't catch my breath all day.

I hate the idea of stepping into new territory of "firsts" with Gavin leading the way instead of Ty.  This is a very new, very foreign feeling and it just seems so wrong and unnatural.  Because it is wrong and unnatural.  I wish I could have stopped this.  Even today.  Even 17 months later.  I found myself in hysterics at the drive-in for a dunkin donuts coffee, just begging God to let me have him back.  Making all sorts of promises how it wouldn't change the course of the world, I promise, no one even has to know, please just let me have him back.  Our family will happily disappear into the woods if that's what we have to do, as long as we can be a family again.  These silly bargains always seem to go in one ear and out the other.  Sometimes I feel as though God himself is trying to calm me and tell me to talk to him again when I'm feeling better.  Isn't that sad?  It shouldn't feel that way.  I shouldn't be so aware of how foolish it sounds.  Truth is, it's a fair request from the almighty God who can do whatever he wants, isn't it?  If there's one thing I learned in life, it never hurts to ask, right? So that's what I did today. I asked and begged for something totally unrealistic and I'm sure I will do it again in moments of weakness.

Today has been a tough day for Lou and I both.  I heard Pharrel come on the radio and wanted to punch him in the face.  Sorry.  I can't help it.  "I'm so (not) Happeeeey!!!"  We are just missing Ty.  I look at how tall Gavin has gotten.  How short his pants are getting.  And it immediately brings me back to the vision of me holding Ty's body in front of the long mirror in my bedroom for the last time.  He had died just an hour or so beforehand and I held him while I sobbed uncontrollably, looking at how long he was. Almost mesmerized by how tall he had gotten and what an oxymoron it was.  All I remember thinking at that moment was what a triumph it was supposed to be that he had grown so much.  All through his previous treatment he never grew an inch.  I had plans to visit with an endocrinologist post treatment to try and get him up to speed once he was cancer free.  Now here he was, this tall growing little boy (finally) whose poor little body just couldn't stop that vile, disgusting beast from winning.

When is cancer going to go away and leave these kids alone?????  My son suffered.  Some of my memories are beautiful, and some are unimaginable because of what I witnessed happening to him.  His pain was grotesque and evil.  He was a tiny baby boy and he suffered like you can't imagine.  But he smiled and he laughed and he hugged me so tight that I knew he was my true love always and forever, wherever he goes.  My everything.  He needed me and all I ever wanted in life was to be the one that he needed.  Because I needed to take care of him more than I ever needed anything in the whole world.

How I wish I could have you in my arms again.  I love you so much.

Tonight I had a full-on breakdown in front of Gavin after his bath.  This doesn't happen often at all.  But today, I guess it was just going to be one of those days from start to finish.  Gavin was tickling my ear and he totally achieved the full-blown tickle spell on me.  You know the one.  Where you have the chills all over and you tighten your neck as much as possible in fear of a little finger creeping its way in for a tickle!  He was loving how it tortured me, and my laughter hasn't been so genuine in God knows how long.  Then he said this...

"I'm going to do this to Daddy, too, when he gets home.  Because he will think it is SOO funny.  And I want to do it to Ty, too.  You have to remind me when I am a grown up that I want to do this to Ty when I first see him in heaven.  He is going to love it!"

Yep.  Tears.  Big, ugly sobs.  Face buried in the towel.  Not a proud moment, but what can I do?  It just wasn't supposed to be like this.  My sweet Gavin.  May he always be happy.  Here he is with his leprechaun trap.  He knows how to have fun despite everything, and that will always keep Lou and me smiling :)  See what a big boy he is?  It's crazy.  PS - he put corned beef inside the trap.  So cute.

Saturday, March 8, 2014

Juice Bags and First Love

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 bright blue Prius was that car yesterday, and I guess I slipped because Gavin said:

“Mom, that guy is a juice-bag, right?” (and with Gavin’s speech impediment, it sounded like “white” instead of “right.”  So stinkin’ adorable.  I guess we know what word I said under my breath that starts with a different letter!  Then he went on to state:

“Is blueberry juice blue?  Because that guy’s car is blue and we should call him a blueberry juice-bag.” All I can do with that is add a hashtag, once again.  #juicebags.

The next day we piled into one car with Dawn and her twin girls before driving down to Virginia to see Kelly, Caryn and all of their kids.  Gavin was so excited to have so many other kids to play with, he ran around like a wild-man all day!  I love to watch him play.  He doesn’t get the opportunity very often to let loose with a gaggle of kids because we are always on the go.  It is so nice for him to jump around and have a good time with little people his age.

When it was time to say goodnight, I told him to give everyone a hug and a kiss.  He went over to Allie, gave her a kiss, and in the most adorable reaction I’ve ever seen, he tipped his head back, acted dizzy, and started to swoon.  Literally.  He said:

“My eyes turned into hearts when I kissed her.  It’s like she was my girlfriend!”

The lucky girl, little Miss Allie.

At night, when we were cuddling up to go to sleep, we said our prayers and as always said goodnight to Ty.  Out of nowhere, Gavin said, “You love Ty more than me, right?”  He didn’t sound sad, he just said it very matter-of-fact.  This broke my heart.  My greatest fear is that Gavin would feel like he lives in Ty’s shadow.  I try so hard to make sure he knows how much he is loved while maintaining a healthy memory of his brother.

“Of course not!  Why would you say that?”
Nothing.  No response.
“Gavin, why did you say that?”
Silence.  Then he whispered, “because Ty used to smile more than me.  He was happy.  But now I smile more than him.”
“Well, I think you both smile all the time, I love you both so much and exactly the same.  You are both my boys and I love YOU just as much as I love TY.  Okay?”
“Okay.”  I followed up with a thousand hugs and kisses.

He seemed 100% unaffected by the entire conversation while a little piece of my heart was ripped open.  I don’t know where it came from or why he made the reference to Ty seeming happier than him, but if there is something good to take away from that conversation it’s that Gavin remembers Ty being happy instead of being in pain.  Whenever I hear someone remember Ty, it is almost always his smile that people talk about most.   And that gives me a lump in my throat because it's so sweet and so sad.

Gavin and Ty will have a bond forever.  Ty will always be watching over him.  And, as we have all seen in this incredible, almost unbelievable photo... Ty is smiling down on him.  

Gavin at the mess fest 2013.  The orb just takes my breath away.  My sister came across this on her phone just recently and it is almost too surreal to believe, but there it is.  Undeniable.  Ty is everywhere.