Wednesday, October 29, 2014

Is October over yet?

It's a tough month.  It's as simple as that.  I thought I would be okay, because in general I've been getting by pretty well, but I was wrong.  Lou was wrong, too.  I am borrowing this from my friend Andrea (Riley's proud mama), because it couldn't be a more appropriate depiction of how we have been feeling for the past 4 weeks.


But despite these feelings, we prefer to tell everyone, "I'm fine."  Because it's easier.  For all of us.

How fitting. Lou just walked past me as I was typing and saw the graphic posted above.  He joked, "You're not fine... You're crazy."  I told him to take another look at what it reads.  He leaned in closer for a double take and he laughed out loud at the perfect irony.

Colleen and I always shared our awesomeness - both of us having birthdays in October and simply adoring the fact that we are Libras.  Because - as all Libra's know well - being a Libra is simply the best.  When Ty was born just days after me, I relished in the fact that we were guaranteed to be two peas in a pod.  He would totally "get" me, and I would totally "get" him, because our beautiful little Libra minds were wired the same way.  On my birthday Colleen texted me a "Happy Craptober" message, and I laughed and cried simultaneously as I thought about how much I can't wait for this month to be over.  Hope you all had a happy Craptober.  Just a few more days and I'll be fine.  Like a zombie on Halloween at midnight, I will emerge from under this dirty pile of grief with my arms in the air - a survivor once again (just before I eat some brains) :)

All month long, I walk outside to a beautiful day that is neither hot nor cold.  No humidity in the air, and the leaves on the trees truly couldn't be more beautiful.  I am reminded... this is just like the day we brought him home from the hospital after he was born.  This is just like the day I took my favorite video of him running in and out of the ocean in Long Beach.  This is just like the day Mely, Ty, Gavin and I ventured to the walkway over the Hudson (we had never been before) and noticed his labored breathing on the drive home.  That was they day we first suspected the worst but refused to say it out loud.  This is just like the day I held him in my arms when we went outside for the last time - when we sat on the bench that I have since engraved with the words, "Ty was here."  This is just like the day he died.  This is just like the day we cremated him.  This is just like the day I sat on the steps in my yard with his Monster Blankie over my shoulders and cried myself into a puddle because he was gone and never coming back.

heart-shaped leaf for my Ty
Lou just pointed out that there is a ladybug on the ceiling right above me as I write.  There has certainly been no shortage of ladybugs this month.  In fact, there hasn't been a single day since October 17 (the anniversary of his death) that I haven't been able to find at least a dozen in my house.  In fact, the other day was a particularly tough one for no particular reason so I took the video camera out to document the fact that there were 52 ladybugs in my kitchen alone.  52 - that is not a typo.  And like I posted earlier - it's not just the ladybugs.  I am fully aware of the science behind the ladybugs and why they are here under these weather conditions and such.  I am aware that my house is not the only house that has been invaded (and, PS, if yours is one of them you should remember they are a sign of good luck and spirituality).  It's the fact that they are here when I need them.  They won't leave!  But by November 1st I am pretty sure they will be gone. Not because the temperature is dropping or what-not, but because Ty knows we will be better when October is behind us.

But don't worry.  I am certain that on a cold winter night, out of nowhere and maybe just after I talk about Ty, I know one will appear above me once again.  Because it always seems to work that way, and that is Ty's promise to all of us. There is something so much more than "this."

Halloween is the last tough day to get through and I just can't stop the memories from pouring in.  They are intense and I am actually very happy about that.  Knowing that I remember every year, every costume, is something that I am beyond grateful for.  Because my greatest fear (and any bereaved mom will agree) is the fear of forgetting.  I remember the Halloween parade at Memorial Sloan Kettering.  I never shared this picture because we look terrible.  We had to go to clinic for our weekly post-chemo check-up and Ty had mouth sores - it was about 3 weeks after his 3rd birthday.  He was too uncomfortable to wear a costume for the hospital "parade" so we went with Spiderman PJ's.  I thought I looked like such a train wreck in this picture and refused to share it ever since. HA!  I had no idea what was ahead - I didn't even know what trainwreck meant yet.  I also didn't share this picture before because his eyes were swollen and red underneath, he has a mouth sore, and he just looks sad.  But it sits in my office on the board above my computer and I have stared at it many times when talking to him.  This is a fond memory of mine, even if it's hard to look at.



Lou and I went to a Halloween party the other night that was hosted by one of our incredible board members, and all I can say is "Thank you."  We got out, it was so good for us, and I got to see so many people who I love and who I want to be in touch with more often but just can't find the strength to put myself out there sometimes.  I'm happy to say we shared some a whole lot of smiles during this otherwise difficult month.  (thank you, Mellissa).

I am disappointed with my Halloween loot this year.  Ty would be, too.  And that makes me mad at myself.  But I let my mood get the best of me and I didn't buy the candy I always promised I would (the eyeball chocolates, the gummy earthworms, the booger gum and the marshmallow insects) but after I realized how disappointed Ty would be, last night I invested in several bags of Ring Pops (lucky kids will get the blue ones), Starburst (pink were Ty's favorite - and everyone's, really, right?) and sour patch kids.  Not as cool as the years before, but I hope he is still proud of his mama for picking out his favorite things.  Tonight we carved a Jack-O-Lantern that Gavin designed and I just know he would have approved.  I feel he was with us.  Which is also why I was compelled to write after such a long silence.  Thank you for waiting and caring and sharing and supporting us through all of this.  XOXO.  Happy Craptober to you all :)

another heart leaf for my boy - on our "date" bench

2009 - Janice's house.  I just want to go back to this place.

Thursday, October 16, 2014

Crying is crippling. Let the debilitating breakdown begin...

It's okay to cry.  I know this to be true.  But, I can't live by that rule day-in and day-out because crying is crippling.  This week, however, is an exception.  Tomorrow will be 2 years since Ty died in our arms.  I don't want to ever forget a single thing about him, or about that day.  Not even for a second. Yet, I can't bear to remember, either.  It's a twisted little truth about life without him.  To think of him is to inflict pain upon myself - and I wish it wasn't so.  I wish it was as beautiful and positive as I most often portray it to be.  I wish every memory brought me laughter instead of tears, but i'm not there yet and doubt I ever will be.

Every other day of the year, I am usually doing well. I put one foot in front of the other, because I push the painful thoughts out of my head.  When my memories float in, I allow them to stay until I feel the tears in my eyes.  Then I push them aside, like a fly on my nose.

How can I do that?  How can I shoo him away like that?  It's because if I don't, I can't function.  I can't be the wife I need to be for Lou, the mom I need to be for Gavin, or the person I need to be to keep working at the foundation in his memory.  Keep Calm and Carry On - that's what the t-shirt says, right?   Well, not today.  Not yesterday and not tomorrow, either.  Tomorrow he will be gone for 2 years, and I will spend every second remembering him.  In fact, the ladybugs came and infested my house yesterday.  I have been waiting for them to come.  They carry a message of peace and everlasting youth on their wings.

Yesterday I went through hundreds of photographs and cried until I couldn't physically do it anymore.  Today I stepped out the door and breathed in the same Fall air that hung in my lungs the day he died.  I allowed myself to cry during the entire drive to the office, talking to him out loud asking him where he was, and cursing over and over again about what he went through.  "I want to know!" I yelled.  "I want to know where you are, and what it's like, and how you are doing!"

Tomorrow I will watch his videos while eating blue Sour Patch Kids and pink Starburst.  I will listen to his little voice, watch him smile and I will allow myself the photographs that break my heart the most.  The photos of him lying still, his skin matching the porcelain white of his 3-piece suit.  And the hospital photos where he is just sick and tired of being sick and tired.  Like this one.


His eyes are pleading with me.  His sadness is palpable.  And me... I'm just so useless. He was physically and emotionally abused for half of his life.  And I allowed it.  I stood by his side and I held him down and I reassured him that everything was going to be okay time and time again.  Through all of his immeasurable pain and suffering, all I could do was stand by and watch.  To hold his hand and allow it, and in the end he died anyway.  There is no "supposed to be like this."  God doesn't hand-pick children to suffer like this, and he certainly doesn't pick and choose over which ones he will allow life, and which ones he takes with him depending on who fights with vigor, who prays harder, or who loves more.  It is NOT a contest. If love and prayer was enough, I know hundreds of children who would still be here.  My God would never do such a thing to children.

The falling leaves are impeccably fitting.  A true depiction of death and dying.  One last graceful decent through the air before returning to dust.  It was always my favorite season, but I will forever look at it differently.  I see Ty in every falling leaf and the beautifully tragic ending it represents.  So natural, free and organic. Temporary.  We are all temporary, and one day each and every one of us will fall from the branch.  For so many, however, it is simply too soon.

Today was the first time I realized how glad I am that we waited to host his memorial until April. The start of Spring.  A celebration of rebirth and new life.  Hurricane Sandy (that B*tch) made the timing unintentional, but when I look back now it was a symbolic blessing.  Gone from this Earth in the Fall and returned to Heaven to begin his new life in the Spring.

A Message to Ty:
Your final resting place is finally complete, my baby boy.  Your Daddy made every effort to make it so. When we decided to erect a statue in Long Beach in your memory, and in tribute to all children afflicted with cancer, the original mini clay models were ours to keep.  We had searched for so long to find an appropriate urn for you for so long, but nothing ever seemed right.  Your incredible Dad found the perfect place for you, so you could continue to be with us every night when we say "goodnight' and every morning when we rise.  He presented it to me on your birthday just 13 days ago, and I cried so unexpectedly and so severely, I couldn't breathe.  Never could I have imagined something more perfect for me to whisper "goodnight" to every night.  I love you always and forever.  Big huge giant much.  I hate living this life without you, but I know we'll join you soon.  And I will hold your hands as you show me how to soar across the skies - my little Peter Pan.  How I love you so.  I could never have imagined a more perfect child, and I am still in awe that I was chosen to care for you.  How lucky I am always and forever.  I hope you can feel my kisses in heaven and I hope beyond hope that you will visit me in my dreams.  XOXOXOXOXOXOXOXOXOXOXOXOXOXO.


In our bedroom, where you belong.  the perfect place for you to rest



Saturday, October 4, 2014

Rainy Birthdays

I don't know what the weather was like the day Ty was born.  I was in the hospital since the day before and he finally arrived at 11PM that night.  But on the day we took him home, the weather was perfect.  One of those magical days in early October where the sun warms you just enough to take off your sweatshirt and soak it all in under the changing leaves.  That was the day our life changed forever, and I couldn't wait to live it.

My birthday was on Wednesday, it was perfectly rainy and gloomy.  It suited my mood.  Today is Ty's birthday.  He would be seven years old.  Today is also pouring rain.  I've been checking the weather all week and there are raindrops from start to finish today.  It's perfect.  A muddy puddle kind of day just for Ty.

Please remember Ty today, and let your kids do whatever they want (well, almost).  It's Saturday. Let them make a mess in muddy puddles,  Bake cookies.  Use fingerpaint.  Let them have ice cream for breakfast and make smiley face pancakes for dinner.  Ty would think that is so funny.  Take pictures and upload to the website here.  http://muddypuddlesproject.org/be-part-of-the-project/  

When I just visited the muddy puddles site a second ago to copy and paste the link above, the random security word that appeared on the JotForm was "birthday."  How crazy is that?!?!?

And if you want to donate in his memory, please help Lou meet his fundraising goal from the recent TYathlon.  He finished the race with great time last weekend, and it was such a beautiful day.  Ty's spirit was there, cheering everyone on, and he is so proud of the work we do at the Foundation.  I know this to be true.  Thank you so much to all the incredible athletes who came out to support the foundation on race day.  A special shout-out to Ty's Uncle Harry, who drove all the way up from Eastern Long Island to participate in the TYathlon, only to turn around afterward to compete in a half Iron Man in Montauk the very next day.  What an amazing achievement!


This morning Gavin woke up extra early with such excitement.  "It's Ty's BIRTHDAY!!!  We have to wake up!!!"  He had me pour a bowl of cereal for Ty, and left the chair empty between us for his brother to join us for breakfast.  I could barely muster a smile until he started talking about how many marshmallows Ty had in his bowl when his were already almost gone (Lucky Charms was a special treat today).  When he couldn't stand it anymore, he said, "Ty, can I sit there and share with you?" He climbed into the empty chair without pausing for an answer and went to town on the marshmallows.  I thank God for Gavin every day, he makes me smile even on my saddest days.

We will sit in the rain and visit Ty's statue today.  We'll watch videos of Ty and eat candy.  We made some "random act of kindness" packages with gift cards to leave around town in his memory and we will let Gavin bake a cake so we can sing Happy Birthday to his brother tonight.

It's not the way it's supposed to be, but we will remember him always.  It means so much to us that you remember him, too.  Thank you.  Happy Birthday, TY.