Wednesday, April 30, 2014


First it was mad cool, or ridonkulous.  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 leading up to his birthday if he would feel different when he was five. If he would look different.  Well, looking at this most recent photo, he actually does!  He is officially a big boy. And he is kind of #incredibaloney in every way.

You know who else is incredibaloney?  Lou.  Best Dad and Husband ever.  I am so lucky to have him to share this crazy, beautiful, painful life with.

Today I posted on our FB and Twitter an interview Lou had with famed author, Jeff Pearlman.  We are so grateful to Jeff for asking Lou the tough questions, and publishing his raw and honest responses.  Read it here:  We rarely read such an up-close and personal perspective from Lou, and I will always cherish this.  I am so grateful for him.  His love for Ty could move mountains.  I will never understand why love like this just isn't/wasn't enough.

It's rainy, rainy, rainy here in New York and more is expected tomorrow.  The optimist in me - however broken and twisted she may be - needs to remind you to ALWAYS jump in muddy puddles.  For Ty.

Monday, April 21, 2014

Carpe the Hell out of this Diem

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 plan a birthday cake.  Gavin insists that he doesn't like cake, only cupcakes (I know, but you try explaining it to him...).  So, he picked strawberry cupcakes with pink, blue and purple icing. PERFECT!  I can totally do that and we can use the cupcakes on Saturday night with Theo, and again on Sunday with the rest of the family.

I was up hours before everyone else, just to get started on those cupcakes.  I was excited.  The finished product was perfection.  On a total whim, I even decided to cut up some marshmallows and found some random candy in my purse (Tic Tacs) to create bunny faces on some of the cupcakes.  This was no cookie swap disaster - this was a masterpiece!  Or so it was, until I stopped into Learning Express on Saturday to see how their mini-fundraiser was going and to meet up with one of our wonderful volunteers.  Five minutes baking in the sun in my car and my cupcakes looked like this...

My pride and joy :)  Once again, I won't be posting my crafty ways on Pinterest or selling these babies at the next PTA bake sale.  But the laugh that it gave me (after I almost cried) was worth it times ten.

Getting away from our house for Easter morning gave us such freedom!  It shed Lou and I from the otherwise unavoidable holiday trap.  The one that sucks you in as you walk down those familiar stairs first thing in the morning, heavily aware of how the holiday excitement is instead replaced with the holiday absence.  Yesterday we were able to wake up feeling fresh and new and excited.  We thoroughly enjoyed the egg hunt as much as Gavin and the kids did.  We visited Ty's statue and polished him up beautiful.  It was such a comfort and truly a blessed day.

Then we went off to my mother's house for a bonafide feast!  Being with my family made me happy and allowed me to get through another holiday, and for the first time I felt somewhat fulfilled.  I am a survivor.  Lou is a survivor.  We always have a plan and we get through each day knowing we are one day closer to being whole again so we try and enjoy that day however possible.  Sometimes it's impossible, and sometimes it's not.

Every year, my family has an Egg Fight at Easter breakfast, and we all bring our colored eggs to my mother's house so we can fight again with our remaining champion eggs at the dinner table.  Also known as "egg tapping" (who knew? thanks Wikipedia), we go end to end and hit the pointy side of the egg to the pointy side, fat side to the fat side, and we go around the table until there is a single Champion egg that didn't crack. As you can imagine, this has sparked a lot of rivalry among the children in our family over the years, and even some cheating back in the day when I was a kid (polyurethane coating and thumb tacks have been suspected).

My nephews are at the prime age for heightened excitability when it comes to winning the egg fight.  If it wasn't for the fact that my older brother showed me how he decorated his egg for Ty, I would have wished for one of my nephews to win. But when I saw the Ty egg, I immediately, secretly and selfishly hoped with all of my heart that Ty would win the egg fight this year.  The simplicity and thoughtfulness behind my brother's egg was the sweetest thing, and it made me cry.  I looked at Gavin and my nephews and thought - "They are going down! Ty's going to win the Egg Fight this year."  And sure as sh*t - he did!  Ty's spirit is so powerful.  It amazes and inspires me every day.  Behold, the champion egg, 2014.

So, this Easter I won.  I was able to fall asleep with a warm heart after a long day.  I missed my Ty, and I saw him all around me at the same time. I survived another holiday.

Chia Scooby, however, did not fare so well.  For those who were following my semi-daily updates on our chia pet via Facebook and Instagram, you know we were off to a slow start.  I tried everything.  A plastic bag, overwatering, lots of sun, less sun.... but the thing never sprouted.  When I showed it to Gavin the other day and explained:
"It's not growing, I'm going to have to throw it away."
He said "But it WILL Gwow (grow)!  Take P-WIDE (pride) in your WERK (work)!"
I couldn't throw it away after that adorableness, until last night when I noticed some mold.  Our first chia pet has officially disappeared to the depths of my garbage can.  Some friends have suggested I turn it into a planter.  Really?  Have you seen my cookies?  What about my cupcakes?  I think the garbage was my only reasonable option :)

I hope you all had a blessed Passover and/or Happy Easter.  Thank you so much for your continued love and support.  And thank you, Mely, for calling yesterday.  Hearing your voice made us all sooo happy!  LOVE YOU!!!! XOXOXOXOX!!!!!

Thursday, April 10, 2014

He is still here. Always.

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 nightstand that leans against the framed photo of Ty and Eva that Eva made for him.  It is filled with a little boys allowance money with birds drawn on the front and a big smiling sun.  Although they never met, this kid sent it all the way from California as a gift for Ty when he was on hospice care.  It doesn't get more special than that.  This time I didn't open Ty's closet, though.  I save that for when I need to just sit and cry among his blankets and clothes and the pillows on which he last rested.

Lou and I often talk about how, in some ways, it becomes even more difficult as time passes. I'm sure anyone who has lost a loved one can relate to the feeling of "permanent" that gets heavier and heavier as the reality of loss sets in.  It becomes validated, they are not on vacation or moved away, they are never ever coming back.  When Ty first passed away I cried all the time.  My pain was raw and fierce and vicious and cruel - but there was also a sense of almost tangible proximity.  It was so new it was almost as if I could reach back into my memory, reach back to the days before he died and touch him again.  As more and more time comes between those memories, he feels more and more distant.  That is an entirely different kind of painful truth - that life goes on - but it is just as impossible to bear.

The routine of being Ty's mommy has faded.  I sleep through the night without waking with the feeling that I've forgotten medication.  Without imagining him calling for me.  I walk into the living room without instinctively looking for him on his spot in the couch.   I never thought that would happen, but it did and that makes me angry and sad and I feel like I'm betraying him by allowing it.  I told Lou a few nights ago, "I swear I used to feel Ty's presence all the time.  It was powerful and real, I know it was.  Now I feel like with every passing day his spirit just drifts further and further away and I don't know how to stop it."  That feeling is not healing.  It is crushing.

So, I've been talking to Ty a lot this week.  I've been telling him my fears and of course, asking him to send me a ladybug.  I walked around the yard searching high and low since the weather has been so nice.  I look up at the ceiling expecting to be distracted by a little red dot crawling along, but no such luck.  Until tonight.

Gavin and I had a great day together.  After I picked him up from school we went shopping for his birthday supplies (he will be 5 on April 22) and then out on a dinner date before heading over to Marist - my Alma-mater - to present to a room full of students on childhood cancer and the TLC Foundation.  As always, I was so impressed with the event the TLC interns pulled together, and I was so proud of how many students filled the room to listen to me talk about Ty and childhood cancer.  It was such a gift and left my heart full.  It reminded me that Ty is ALWAYS with me, so much so that I have dedicated my life to the cause all to honor him and not a day goes by that I don't find happiness and comfort working at the Foundation.

We got home late so I let Gavin stay up while I got the house in order before bed.  He saw a spider at one point and had me carry him downstairs because he was afraid (i know, i know, this is the same fearless super hero I talk about all the time).  In between his whining he asked me to stop on the stairs but I kind-of ignored him.  I had dishes to do.  When I put him down to put on my rubber gloves, he said "Mommy, you aren't listening to me.  I think it was a ladybug."
"Oh yeah?  Where?"

He took me back to the steps, and there she was.  Our little golden ladybug telling us that Ty was here.  Immediately I feel better.  I feel relieved.  He is not distant, he is always right here.

Tuesday, April 1, 2014

Gavin doesn't get it and that's okay


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 have to go to heaven?”
“Because his body was too sick for him to continue living in his body, so his spirit had to leave and go to heaven.”
“I KNOW THAT!” he said shaking his hand and looking annoyed with me (because Gavin knows everything, by the way), “but why can’t he come back?”
“His spirit is free and he can’t come back because he can’t live in his body anymore like we can.” (I was winging it, this was an unexpected conversation.
“Why did he get sick?”
“I don’t know.” By this time, my insides begin unfolding but outside I keep it together.  There is a tidal wave of tears building inside me while on the outside I try to gently tip my head to the side, smile softly and think of what else I can say to explain this to a four/almost five year old.
“Look at this chair I made!” Gavin shows me in excitement!  He bit into his slice of apple and it looked like a chair.  Then he ran off to see if his Lego guy could sit in it.

The wave inside me began to subside.  The difficult conversation was over.  I wanted it to be over because it was sad and unpredictable and I was afraid it would end with me crying and upsetting Gavin.  And I didn’t want it to be over because I want Gavin to always be interested in talking about Ty.  I hope he always asks questions.  I hope everyone does.

Ty was different when it came to understanding heaven and spirituality.  I truly believe that was his gift.  I feel he saw angels for a long time before he passed away.  I like to believe they comforted him and helped him feel more comfortable about dying.  When I had this conversation with him last September, he just looked into my eyes intently, nodded his head, and whispered a slight “yeah” as I spoke.

"I know that Daddy has told you that you are getting better now.  That you are going to walk, and run, and jump in muddy puddles.  Do you know what else you're gonna be able to do?  Fly.  Do you know what heaven is, Ty?  Heaven is where God lives, and you know how much he loves you.  In fact, heaven is filled with people who love you more than you can imagine because heaven is made of love.  There are so many children just like you there.  And they want to play with you.   A lot of them even had cancer like you, and they just want to hold your hand and have fun all day long!  Heaven is filled with rainbows, and at the end of every rainbow is a giant pot filled with candy and chocolate coins.  And you know what else?  There are muddy puddles everywhere.  You can take the hand of your new friends, run super duper fast, jump as high as the sky and then SPLASH!!"

It still seems surreal that I had this conversation with my son just days before his fifth birthday.  That I knew he was going to die, and I think he did, too.  It still doesn’t seem real.

For those who missed the segment on Katie Couric yesterday, you can watch it via the link below. It was an incredible segment and Katie is a special person.  So grateful.