Thursday, December 24, 2015

Coping with his absence at Crimpy time

Holidays are built on tradition.  They come with a host of annual rituals that stir up all sorts of long-term memories from as far back as early childhood (when I got a “Baby This N’ That” from Santa), and as recent as just last year (when I failed at cookie decorating).  I remember who gave me almost every ornament on my tree.  I chuckle every time I count the 11 “Baby’s First Christmas” ornaments we have for Ty, and only one we received for Gavin.  Sorry Gavin, it’s just a fact of life when you are not the first-born.

Then there are his ornaments.  The one he picked out when we were on our Make A Wish trip in Disney.  The ones where a bear holds a number for each Christmas he celebrated with us, but the numbers stop at “5”.  The ones that adorn his beautiful photos with sentiments such as, “always in our hearts,” and “Christmas in Heaven.”  I seriously don’t know how we survive tree trimming each year.  Every ornament I pull from the box stabs a bit harder and stings a bit sharper than the last.  Even the happiest of memories are juxtaposed with the reality of how much things have changed.  

Our house is decorated.  It is beautiful and festive, and if you didn’t know better it would feel oh so merry and bright when you walk through our front door.  But that’s because the extra stocking on the mantle goes unnoticed to most. 

This will be our fourth Christmas without Ty, and I can’t remember a single thing about the first Christmas without him.  Not one.  Gavin was 3 ½ years old, I know that, and he was probably just starting to take notice of the holiday magic, but I was too absent to witness any of it. My body was there, but my heart and soul were elsewhere.  I know we got a tree, but I can’t remember doing so.  I suppose we decorated it, but I can’t imagine how.   Slowly, I am trying to rebuild family traditions that honor Ty’s memory without being mired in sorrow.  But to be honest, I still find it pretty impossible.  I am much better at coping with his absence, but it doesn’t make it any less painful.  It’s just different now. 

We continue to hang Ty’s stocking next to his brother’s.  Each year it is too difficult to imagine placing it back in the box, yet seeing it hanging there every day is equally cruel.  I will fill it with his favorite candy from Santa Clause as I have done every year, but on Christmas morning it is a strange and uneasy feeling when we have to unpack it ourselves, and the candy sits uneaten in my pantry for months afterward until one day I toss it out quickly and without question in a moment of strength. 

I wonder what Ty would want for Christmas this year.  What pages would he be folding in his toy books?  He would be 8 years old, and I don’t know what his eight-year-old voice would even sound like.  So I playback his squeaky four-year-old voice in my head and I hear his giggle when he announces “Bow and Arrow!  Guns!”  He loved the rise it would get out of me. 

So this year I didn’t resist when I saw the totally awesome bow and arrow at the toy store (Nerf, don’t worry).  I bought it for Ty without question, and that secret was mine and only mine as I continued to walk the aisles and unload at the register.  Later in the week Lou and I were talking about how we can honor him on Christmas morning.  We decided that we will watch some of his home videos before opening presents (something Gavin may end up bringing to his therapist later in life along with a long list of other things), and we will wrap the bow and arrow as a gift for Gavin… from Ty.  I am pleased with this.  I hope to give Gavin a gift “from Ty” every year from now on.  Something that is meant for Ty, but equally fun for his little brother to play with in his memory. 

Christmastime, 3 years old.  Ty pointing to the present he wants to open.  Look at that smile!

When I was searching my photos over the years, I relived the holidays from 2010 - 2012 and for the first time it occurred to me how blessed we were with having truly wonderful, happy, magical Christmases.  Easter, on the other hand, was always the worst.  Christmas was our most joyous holiday, he was feeling good and happy as can be.  Every Easter he was so sick, and endured such suffering.  Reflecting on this now, I find it so very poignant.

This time of year I am reminded of the reason for the season, but as much as I love and trust in God, I will never be able to stop asking, “why?” I used to pray to Mother Mary with such passion, and her statue at the church always looked at me with sadness and above all, sympathy.  Her eyes told me, “I know, I watched my son suffer, too.”  But they never told me, “it will be okay.”  I searched her face for reassurance.  I begged and pleaded.  But I never saw anything but, “I’m sorry.” 

When I cried to her I would tell her that I’m not strong like her.  That I can’t bear to lose him and if I had the choice to save all of mankind or save my son, I would choose my son.  Because that is how selfish I am.  I should be embarrassed by that truth, but there is no pretending when it comes to prayer.  I had no choice but to lay it all out there, admit I am flawed, and beg for my son to be cured.  I never prayed for anything so hard in my life. 

I don’t ask God for anything anymore, because it hasn't worked out for me.  I have vowed to simply trust in God and stop asking.  Instead, I say a prayer of thanks every night. Even on my worst days, I am grateful for my family, and for the time I had with Ty.  I'm grateful for my Christmas memories with the best good boy in the whole wide world.  I’m grateful for the roof over my head and the food on my table.  My son suffers no more, and I know that.  I am coming to terms with living this life without him.  I value my time here on earth, I adore every minute I have with Gavin, and I absolutely love what we are doing at the TLC Foundation – my happy place.  And when my time comes, I will have the greatest reward waiting for me.  It is that truth that keeps me going.  Merry Crimpy everybody.  XOXO.  

Tuesday, December 8, 2015

The Long and Winding Road that Leads to a Cure

It's been three years since we first opened our doors at the Ty Louis Campbell Foundation. I was so raw with grief and so angry about losing Ty to cancer, that this nonprofit became my lifeline. I lived and breathed fundraising and dove head-first into learning the landscape of childhood cancer research. I reached out to every other childhood cancer nonprofit I could find, and made connections with the parents and the game-changers. It is no secret that I believe collaboration is key and we will make more progress, faster, if we work together.  

It has been a journey in itself - a long and winding road that has consumed my life in the same way cancer did 5 years ago - but this journey has the greatest reward imaginable at the end of the tunnel. If, in my lifetime, I witness a little boy like Ty who survives his diagnosis thanks to safer, more effective treatment options - the TLC Foundation will have achieved everything we set out to do.

There is no place that I love being more than right here in this office. Ty is all around me here - he is a part of everything we do.

Meet Riley - Our First Guest Blogger!
Riley is a young girl in our community who was inspired by Ty's story. She launched "The Blue Lollipop Project" in his memory as a means to help children with cancer. For her Bat Mitzvah Project, she fundraised for the TLC Foundation and continues to support us to this day. I recently invited her to visit the research lab at The Children's Brain Tumor Project/Weill Cornell, and she got to meet Dr. Sheng Li, the Ty Louis Campbell Fellow, along with Ty's neurosurgeon, Dr. Greenfield. I asked her to post our first guest blog about the experience, and her words touch my heart.

"What I thought was already a meaningful experience became so much more. I was given the opportunity to see where my efforts through The Blue Lollipop Project have gone. On November 13, I got to visit the Weill Cornell Medical Lab for Pediatric Cancer Research. The first thing you see when you walk into the lab are pictures of seemingly healthy children who have all passed away from cancer. At first glance I felt happy, thinking that these were pictures of children who had survived, but as my gaze went to the bottom of the photos I quickly realized each one had a birth and death year. My heart stopped for a second as I processed this. It was very emotional seeing all of the kids pictures on the walls knowing that they had passed away, but at the same time it made me feel hopeful knowing that the parents of these children are so strong as they help the lab to try to save other children while mourning their own. Before going to the lab and meeting the researchers whom my project funds, my understanding was that the money I raised went to the TLC Foundation and then from there to funding multiple pediatric cancer research facilities. After going to the lab, I really made the connection between what I do and it's affect on others. I got to meet the doctor, Dr. Sheng, that the TLC specifically funds. Dr. Sheng developed some technologies for pediatric cancer research that are used all around the world. I found it so cool that the person that The TLC Foundation funds has done this. It's truly amazing what can happen when people come together for a single cause. 

This time of year I am so thankful for a multitude of things including my involvement with the TLC Foundation. I hope that people realize what the TLC Foundation does and how the funding is directly used to fund pediatric cancer research. I am so grateful that I got the chance to see the lab and meet the researchers. It is so inspiring what they do! Thank you, Mrs. Campbell for sharing Ty’s story and always inspiring me to do more."


Sunday, November 29, 2015


The Campbell's are pretty big on traditions, and the holiday season kicks off a slew of them that starts with picking out our Christmas tree the day after Thanksgiving.

Lou has never been the “wait until the last minute” type, or the “Charlie Brown Christmas Tree” type.  He has some OCD tendencies which means I benefit from his heavy lean toward neatness and perfection.  He is the only man I ever picked out my very own Christmas tree with, back when we lived in our first apartment in Brooklyn.  It was beautiful and absolutely flawless, just as every tree has been thereafter.  One thing I learned quickly, though, is that no matter where I hang my ornaments while trimming the tree, they are likely to be moved to a “better” spot at some point (drives me absolutely crazy to this day!). 

Both the apartment in Brooklyn and the house in Long Beach were tiny.  We had to pick out modest, narrow trees that we could tuck into a corner of our already crowded living room.  So when we moved into this huge house in Pawling, we started a new tradition of chopping down a giant tree at the farm. The bigger, the better.

We have one room with 12 foot ceilings that we named “The Christmas Tree Room” even before we bought the house, because we knew it wouldn’t be used much aside from hosting the tree each year.  We moved in just a few days after Thanksgiving, bringing Ty to his new house straight from a month-long hospital stay.  He never got to say goodbye to the old house or to Long Beach, but he adjusted quickly and had love-at-first sight when we walked him into his new bedroom covered in superheroes. 

As you know, this community welcomed us with warm hearts and open arms.  One such individual in the community was/is Mike Sincair.  Mike owns a Christmas tree farm in Union Vale – right up on Walsh Road near the world-famous ERJDAT Christmas Light display.  Every year he allows us to come to the farm when it isn’t otherwise open to the public, so we can take our time and pick out the perfect tree in privacy.  Our first two years, Ty wore his Santa hat and eagerly picked out our tree as I carried him around the farm. These past 4 years, we walked onto that farm with a pit in our stomachs and lead weighing down our hearts – sighing big to catch each breath.  We look up into the sky and let Ty’s spirit guide us to the tree.  We keep up the tradition as much for Ty as we do for Gavin. 

Four years.  I had to pause after writing that and recount on my fingers with Lou because it is so hard to believe this will be our fourth Christmas without the best good boy in the whole wide world. 

Mike’s supply of 12-foot trees has diminished over the years, but he said he had one that was ours if we wanted it.  We looked out onto the farm and spotted it immediately.  A beautiful 16-foot Balsam Fir that rose high above the rest!  It was reaching toward heaven.  We did our due diligence and explored the rest of the farm, just in case, but there was no doubt that it would be our tree from the second we saw it.  It was undeniable.  As always, Ty made it clear what he wanted for “Crimpy.” See the enormous one in the back? Towering over the others?   Pretty obvious, Ty.  Thank you.  Gavin gets to cut down his own tree, too, for the den.

Each year, Mike bakes more than 4,000 cookies to share with his customers at no charge.  You read that correctly – 4,000+ cookies, and they are delicious.  When we walked into his shed in search of his stash, we saw Ty’s photos adorning his bulletin board.  Front and center.  His kindness is unmatched.  Like so many others, Ty truly touched his heart.  He let Gavin drive the tractor, he put the tree on his trailer and drove it all the way to our house when it wouldn’t fit on the roof of our car, and he left us with dozens of cookies to enjoy afterward.    

I purchased two potted spruce trees that we put out on the porch, and as I placed it on the step there was a giant ladybug crawling in the very spot I wanted to put the tree.   I brought Gavin over to show him, but by the time I looked back the ladybug was gone.

If I told you about the Christmas Tree tradition yesterday, it would have been a tear-filled story.  Grief is funny like that.  Trimming the tree was an impossible task, every ornament holding a memory and longing that is impossible to bear sometimes.  Yesterday I teared up all day, I sulked, I decorated, I stopped, I decorated some more.  I drank too much “egg nog” in an effort to escape.  But this morning, I woke to a beautifully decorated home and my heart is at ease.  He is here in this house and he is happy that we continue these traditions.  His tree is pure perfection, and I am pleased. 

Saturday, October 17, 2015

"I am free and so are you"

On this very night three years ago, I took Ty’s temperature for the umpteenth time and it read 104.9.  Under his shirt and his back were burning up, yet his face felt cool, his hands and feet warm but not burning with fever.  I knew what this meant, but I swear in my heart I still held on to hope that he might recover.

He had been asleep for hours on end.  I spoke to his doctor, we talked about how the only way to try and diagnose and treat the fever would be to bring him in – but we wanted him home.  We promised we would never take him back to the hospital again, and no matter how desperate I wanted to believe that he would wake up the next day, I also knew that he was so close to dying, any attempt to save his life would be in vain.

I was up early the next day.  Ty still sleeping peacefully in my bed.  No sign of waking.  I remember saying to my mom, over coffee, “if he doesn’t wake up soon, I don’t think he ever will.”  To actually hear myself say those words, it was like someone else was speaking them.  I was so torn between wanting to believe in his miracle, and knowing that he was leaving us.  It felt like such a betrayal to admit what I knew to be true; to say it out loud like that.  But still I prayed.  I still hoped that somehow, he would wake up and speak to me.  That he would spring back to life and we could praise God for his mercy. 

I still hope and pray for that impossible dream to come true every single day.

As the day went on, his breathing changed.  It was hard to watch.  Each breath slow and quiet, but with each inhale his face looked strained - as if it was taking every bit of energy left in his body.  I wanted so desperately to talk to him.  I thought about whispering and telling him how much I loved him and how it was okay for him to leave us now… but I just couldn’t.  It wasn’t okay.  As much as I truly wanted him to be free, I couldn’t bear to let him go. 

The minutes rolled by and nothing changed.  I never told him, “it’s okay,” but when the minister came and prayed for our boy in the room with Lou and I, it was as if we all understood the finality of that prayer.  I thanked him and walked the minister to the door.  Upon re-entering the bedroom I saw Ty wake up for just a moment and I ran to him yelling to Lou, “Oh God, I think he’s dying. Can I hold him, I want to hold him?”   I pulled him into my lap and Lou wrapped his arms around us both and we just cried and told him “I love you” over and over and over again.  His eyes were open but staring off into the distance until they slowly closed again as he took his last few breaths.   That was it.  Just like that he was gone.  

Recounting that moment is one of the most difficult things I do.  Whether I relive it in my mind on sleepless nights, or write about it here… the act of remembering these details makes me so sick with grief.   I can’t breathe, my chest hurts, and my head feels like there is a giant inflated balloon causing the most unbearable pressure inside.  But, it is important and I think it is healthy for me to do this.  Tonight, I want to remember every single minute of my last 24 hours with him.  Tomorrow morning we will polish his statue and talk about how impossible it is to believe we have survived 3 years without him.  

There is a beautiful little boy named Kwesi who passed away soon after Ty.  He was eight years old and he told his mother upon leaving this world, “I am free, and so are you.”   

I think I hear him saying it in the whispers of the wind every now and then, and I hope Ty and Kwesi truly are free to soar!  I love the image I have of them feeling truly light and free.  It makes me happy. 

And although we may be free from the pain of watching our boys suffer, his mother and I will never, ever be free from the pain of losing them.    This grief will live with us forever, and I carry it with me as a reminder of my loss.  I have a love/hate relationship with my grief because it keeps my pain raw, it keeps the memories of my son close, and it inspires me to work so hard to some day change the outcomes for children like him. 

We hope you will continue to think of Ty and follow our families journey.  Thank you for your love and support.  Three years.  Where did they go?

Wednesday, September 23, 2015

Back to School Blues

I have had so much on my mind, it’s been several weeks that I’ve wanted to get some of it out on virtual paper and I am happy tonight to find the time.  I have had a hard few weeks, for so many reasons, not the least of which was Back to School.  Ty’s time of the year is upon us… the memories of the day he was born, the hazy September days where we were ripe with fear post-diagnosis, the day we drove home from the hospital knowing we would never return, and the day he died in our arms.  The perfect weather that September and October brings is forever filled with these memories. 

I look at Gavin, a first grader who already rolls his eyes at me and knows just how to get under my skin when he wants to, and I see a boy.  Like I always say… where did my baby go?  I never had a big boy before.  Ty was the older brother, but still he was a baby.  He needed me so. 

I’m not suggesting that Gavin doesn’t need me, but it’s not the same anymore.  It’s just so different. I love our “grown up” conversations and that he can put his shoes on by himself, but I still bend down to help him every time.   I’m in no rush for him to tie his own shoes, or lose his first tooth – but I know it will be any day now.  My purpose, the Mommy in me, is slipping through my fingers.  I look to see if he needs more water and I see that he already helped himself to a glass when I find him glued to his tablet.  When did he even learn to play Minecraft?

It all happened so fast.  And I missed so much of it.  Most of my memories of Gavin from the time he was 18 months through 4 years old, especially the first year after losing Ty, are a complete blur.  I have loads of pictures and videos to remind me, but I was so helplessly consumed with caring for Ty before becoming a walking zombie as I navigated my grief that first year; I didn’t get to experience much of being Gavin’s “Mommy” until now – and he already calls me “Mom” instead. 

When I put Gavin on the bus for his first day of first grade, I was bursting with love and pride.  When Tony (the bus driver) opened the door I was so relieved to see his familiar face and I knew Gavin would be in good hands.  I was happy.  As the bus pulled out of sight I began walking down the block to my house and suddenly I felt Ty with me.  I imagined his spirit over my shoulder, as I often do, and it broke my heart into a million tiny pieces.  I wanted him to get on the bus with his brother.  I wished he could have a first day of school so badly.  My entire body suddenly weighed a thousand pounds and I dragged myself home, crying loudly down my quiet, empty street.  Who cares if the neighbors look out the window?  I was hurting.  I sat on our date bench forever.  I looked up into the sky as I always do – and I tried to replicate the exact vision Ty had when I last held him there.  

On a beautiful October afternoon, three years ago, I sat Ty up on my lap and held his head in my hands as I pointed to the sky.  I can see every detail of his face in that moment.  His green eyes were so bright in the sun, and the tiny brown speck visible in his right eye.  His skin was utterly flawless and his hair felt like fine strands of silk between my fingers.  His stare that day was so distant.  He was leaving me.  Even at that very moment I felt he was preparing to go.  His eyes were gazing into the distant skies, with just a few leaves from the hovering birch trees blocking his view.  Whenever I sit on our date bench, I tip my head back and try to imagine what he saw.  What could he have been thinking about?  Was this vision pretty enough for his last time outside?  It hurts so much to go back to that day. Just writing about it makes it harder for me to breathe. 

When I find myself it this desperate place, where the only thing I long for is a “do-over,” I try to think of all the incredible signs I’ve been blessed with over the years to assure me that there is so much more to this life, and that whatever it is, it is beautiful.  It is pure love, and there is nothing more perfect.  He taught me the true meaning of love at first sight and if I could have a million "do-overs" in this life, I would choose him over and over and over again.  

Recently, a great friend of ours told Lou and I a great story about Ty’s ladybugs.   

First a little background… When we lived in Long Beach while the boys were young, we owned a great little beach house on the corner where the back was our home and the front was Lou’s chiropractic and PT office.  Since we moved, the therapist who occupies the space has expanded the office and now uses what used to be Ty’s room for treatments. 

Our friend has been going for physical therapy and ended up in “Ty’s Room” for treatment.  She noticed a ladybug in the room and mentioned it to the PT.  He responded by telling her that there are always ladybugs in that room.  Always.  Of course there are, right?  I never saw one when we lived there, but then again, that was before Ty became magic.  Before he started sending them. 

XOXO.  Thank you for caring enough to check in on me and my family.  Thank you for loving Ty and remembering him with me.  


Endless Summer!  Today may be the first day of Fall, but we aren’t ready to say goodbye to the beach just yet!  Come to the Luau on Saturday – it’s going to be an absolutely beautiful day in Long Beach – brought to you by Ty Campbell!    The forecast says 71 degrees with full sun.  Skudin’ Surf will be there with the mechanical surf board, the raffles are outrageous (check Facebook to find out about absentee bidding), the authentic hula dancers and music/entertainment will keep the kids busy, and the food from Brother Jimmy’s is downright delicious.  Please say goodbye to summer with one last day at the beach – Ty’s favorite place in the world.   CLICK HERE.

Sunday, August 2, 2015

The Power of Yes - It's what Mess Fest is all about

Before I jump into the magic of Mess Fest and how much we have planned for this year to make it bigger, better and longer than ever... PLEASE check out our page on Thunderclap and join the campaign by allowing access to your Facebook and Twitter so we can spread the news about Mess Fest far and wide.  It is so important to help bring our cause and our event into the spotlight.  

Speaking of spotlight... I posted an article to Huffington Post just the other day all about the Power of "Yes" and why we created the Mess Fest.  I hope you'll read it and share it with your friends.

This quick snapshot represents just some of the children who will be honored at Mess Fest on Saturday.  They are the reason why we spend the entire summer planning for this day.  We hope you will help us help these kids while enjoying a ridiculously fun afternoon.

Most of you can't possibly understand how incredible it feels every time I see a Muddy Puddles photo posted to my wall, the TLC wall, in an email or submitted through the Muddy Puddles website. When Ty died, I immediately started to panic about how we can make sure his life is remembered.  It is so important to know he made a difference, not just to me but to the world around him - that we are not the only ones who are still thinking of him all the time.

Well - even after all this time - the photos keep on coming, and the people keep on joining us each year to play in the mud at Mess Fest.  That, my friends, is a LEGACY, and it is so incredibly comforting.  It represents the beauty behind all of the pain of his loss. Lou just said to me, "Ty was never here to see the Mess Fest," and I reminded him that Ty created the Mess Fest.  Of course he has seen it.  He is the largest presence at the camp that day, and anyone who has attended would agree.

To honor Ty's legacy our planning team has vowed to make this the best Mess Fest yet.  In memory of Ty and in honor of all the children who have ever/will ever battle cancer, this day is sure to be everything a child could dream of.  We added an extra hour to the agenda (11 - 5PM) so you can spend the entire day, or if you have other plans you can squeeze in both because you will NOT want to miss this.  What else is new?:

  • A GIANT Slip n' Slide - 40x100 feet - you've never seen anything like it
  • Hydraulic Trampolines
  • The "Geronimo" Bungee Jump
  • The Morgan Stanley "Slopstacle" course featuring color run powder and foam pits
  • Inflatable Twister
  • The Velcro Sticky Wall
  • Junior Bubble Soccer and Inflatable Bowling
  • The Nest and SkyTower playgrounds (brand new)
  • Candy Cooking Class in the Kids' Kitchen
  • The Trading Post and Jewelry Station
  • GAGA
  • The Gymnastics Pavillion
  • Karaoke and more...

So please: Get your tickets, join our Thunderclap campaign, it's not too late to do the Dirty Dunk and we have a couple more days to fulfill our Amazon Wish List.  It's almost here!!

Sunday, July 12, 2015

Where did my baby go?

...and I don’t mean Ty.  Because that is a question I won't know the answer to for as long as I live.  I mean... really… where is he?  I believe in a beautiful place but I don’t understand what that means, what it looks like or where he is exactly.  None of us do -- no matter how confident we are in our faith. 

No, I mean my baby.  My Gavin.  What the hell just happened?  When did he get so tall?  How is it that he is finished with kindergarten already?  Off to the first grade soon!?!  On the first day of school he was such a baby.  With his oversized backpack and new sneakers that were one size too big for growing into.  Today, it became obvious that my baby is long gone and far away.

He speaks perfectly.  That adorable speech delay has vanished completely and he hasn’t asked to watch Paw Patrol in so long I can’t even remember.  He watches big kid movies and he thinks Sharknado is hilarious.  

Speaking of "hilarious," he uses that word all the time, in perfect context.  And he always sounds so grown up.  

I am sad about this.  I am “mom” not “mommy” anymore, sometimes even Cindy.  And as much as I love how our conversations have evolved and I can’t wait to see who he becomes as the years pass by, I feel like my time being a mommy has flown by and so much of that time was robbed from me by stupid cancer. 

I can’t ever get that time back.  A feeling I know all too well. 

But then something catches my attention on the kitchen counter.  My little bud vase is filled with the flowers that he still picks for me, most of which are wildflowers that others would deem weeds, and I realize he is still there – my baby – just not in the same way. 

I am so grateful that he still sees the flower, not the weed.  I hope he never loses that!  I am grateful that he still looks for me first when he stubs his toe or scrapes his knee, and that every single time I say "I love you" it is followed by his, "I love you more." 

I just love this big little fresh face.  

Wednesday, June 3, 2015

My kid is a weirdo and I couldn't love him more

Gavin recently learned the word weirdo and he loves it.  He has been having a lot of fun testing in out in all different ways to see if he can get a rise out of me.  Of course I have told him over and over again that it’s not a “nice” word, which probably makes him want to use it more.

“Hey… You… Banana in my banana bread (pointing to the slice of banana bread I gave him for breakfast)… You’re a WEIRDO!”  

Me: “Why don’t you want to invite any girls to your birthday party?”
Him: “Because they’re weirdos.”

Me:  “You love all superheroes, but Superman. Why don’t you like Superman?”
Him: “Obviously, because he’s a weirdo.” 
I had to stop arguing with him on that one when he pointed out how Superman wears his underwear on the outside of his uniform.  Superman immediately lost his cool status with me.

What my sweet boy doesn’t realize is that he is as weird as they come.  And I love my little weirdo.  Which means my husband and I are a couple of weirdos, too, because as my Mother-in-Law says, “You don’t plant tomatoes and get potatoes.”

Off the top of my head, a quick list of some funny things about my little wack-o:
  • He wears goggles in the shower because he doesn’t want his eyes to get wet.  
  • He prefers wearing pajamas over absolutely everything.  If you try to show him that sweat pants and t-shirts are equally comfortable he will look at you like you’re, well, a weirdo.
  • He refuses to wear short-sleeve shirts.  No matter how hot it is.  He prefers not to wear shorts over long pants, either, but I use shorts as a bargaining chip (i.e. if you wear shorts today, I’ll let you wear a long sleeve shirt).
  • He won’t touch the toilet bowl because he’s afraid there’s pee on the seat but he doesn’t care that his efforts to avoid any contact with the toilet result in HIS pee getting on the seat.
  • He also runs out of the bathroom after flushing in fear that the toilet will overflow every time
  • He hates ice cream because it is cold.  I mean, c’mon!!  
  • On that note, he doesn’t like chocolate, either.  Is he even human?
  • His favorite superheroes are the X-Men, but he prefers Cyclops over Wolverine – I can’t even begin to understand this.
  • He calls his penis his “wee-nis” and calls a girl’s you-know-what a “no-penis” (disclaimer: I did not teach him this).
    • “GAVIN!!! Close that door, I told you I need privacy!!!!
    • “Okay, Mom.  Sorry, I forgot!!  I almost saw your no-penis! <giggles>"
  • He knows the word “bra,” but prefers to call them “boob clothes.”
  • He says that the only reason girls are lucky to be girls is because when they are teenagers they grow boobies and can look at them and touch them as much as they want (he’s a sick-o)
  • I believe his familiarity with the word is also why he thinks “booby” traps are so funny.  
  • When I asked him what kind of cake he wanted for his birthday, he picked banana bread.
  • The only way he knows how to dance is breakdancing.  Very bad breakdancing.  
The other night we were saying prayers before bedtime and Gavin was asking me what everything means.  Of course I was rushing and just want him to go to sleep, so I had little patience.  When we got to the Hail Mary and we said, “blessed art thou, amongst women,” he stopped me again to ask what it means.  

“Ugh, Gavin.  C’mon!  We’ve been saying this prayer for years.  Amongst women is an old fashioned way of saying ‘among women,’ so it means she is most blessed among all women.”

“OHHHH!!!!  All this time I was picturing A MONKEY SWIMMIN’!”

I guess I should have more patience and take the time to explain things to him more often!  So cute.  I love my little weirdo so so very much.  He makes me so happy.  We are in love :)

Sunday, May 31, 2015

I hurt myself today... to see if I still feel...

When Johnny Cash sings those palpable words, so somber and sad, he describes my day on Friday quite perfectly.

 I didn’t know I was doing it.  I didn’t realize my trip into the city would turn into a haunting day of torture.  I thought I was strong enough.  I was even looking forward to it; longing for some time in the neighborhood that we used to call our home away from home.  There is a piece of me that still lives there, and I miss it. 

When Gavin turned six in April, his pediatrician discovered a heart murmur during his annual physical.  She assured me it was likely nothing to worry about and referred me to a local cardiologist.  After knowing what we know, Lou and I decided to take him to a specialist at NYP-Weill Cornell, instead.  My best friend’s niece, Savannah, was feeling tired and sluggish – she had a tumor growing around her heart.  Ty had trouble sleeping, he had a tumor growing at the base of his skull.  Maybe if the doctor’s discovered them sooner, our children would still be alive.  I don’t take any chances.

Walking from the parking lot to the hospital entrance, we passed Memorial Sloan Kettering.  (Just to explain, Ty was treated by the neuro-oncology team at MSK, that was our regular hospital, but his neurosurgeon was across the street at Weill Cornell, as was the Pediatric ICU.  At the time there wasn’t a PICU at MSK so we spent plenty of time across the street when Ty was critical). 

So passing by MSK, I had a strange, almost unstoppable urge to go inside.  I had my eyes peeled for a family on the street so I could say hello and connect with the parents.  It wanted to belong there again.  I hoped to see Ty's oncologist Kevin or our favorite nurse, Mary, just to feel for one second like they were still part of our lives, and for a split-second it almost felt like I DID still belong there.  

Then it hit me that I have no reason to walk through those doors.  That the family on the street wouldn’t want to “connect” with me; that they don’t even want to know I exist!  When Ty was fighting, I kept my distance from the bereaved parents.  I wasn’t strong enough to comfort them or to get close to them.  I needed to focus on treatment and survival and keep far away from the “other” moms.  Now I’m the mom they fear most.  The mom they turn away from.  And I don’t blame them ONE BIT. 

I never expected to suffer such intense flashbacks the second I caught the familiar scent of the bakery in the lobby at Weill Cornell.  I didn’t know that the cardiologist’s office was on the 6th floor in the Greenberg Pavilion; that I would make a left off the elevator instead of the right I was so accustomed to.  I didn’t realize I could still feel so green with envy when watching the families carrying blue or pink balloons up to the maternity floor to welcome a new baby.  I became flooded with memories from when I was the new mom.  Who could have ever imagined how my brand new baby boy would suffer in life. 

I grabbed Gavin’s hand and rushed passed the gift shop in fear that he would want to go inside.  I didn’t even look toward my favorite bakery, nor did I make eye contact with a single person on my way to our appointment.  Once we were inside the cardiologist’s office, I thought I was safe.  I had never been there before.  It was so new and nice, with so many fun activities in the waiting room for Gavin. 

I was safe until the testing began.  My eyes filled with unstoppable tears the minute I saw Gavin stick out his finger for a pulse-ox.  He had never seen one before and he thought it was funny.  He doesn’t know that Ty wore a pulse-ox on his finger or toe more times than I can count.  When the nurse peeled the leads and placed them all over Gavin’s chest, with one on each leg and one on each arm, I was in a complete state of internal panic.  Not because I was worried for Gavin – he was smiling the entire time – but because I was brought back to the PICU.  To countless emergency stays.  To laying in the bed next to Ty, trying to avoid pulling on all of the wires hanging from those leads.  If the nurse saw my tears, she didn’t say anything.  I am grateful for that.  I am grateful that Gavin didn’t notice, either.  He was relishing in the attention and having a bit of fun with the whole thing (leads on his nipples, leads on his nose, etc.). 

Everything checked out perfectly fine for Gavin.  The doctor paid extra attention to the echo-cardiogram and explained everything he was seeing to me.  He assured me that there is absolutely nothing to worry about. He was referred by Ty’s neurosurgeon and he knows what we’ve been through so he was very careful with me.  Very kind. 

But something haunts me from that appointment.  They had very modern machines, and they used the gel leads that are very easy and painless to peel from the skin.  Gavin was peeling them off and placing them all over the place and it didn’t hurt at all.  That’s good, I know.  But watching that brought me right back to the PICU when Ty was freaking out over replacing the leads that were all over his body.  His skin was so sensitive from chemo and they always stuck on so badly, like the worst bandaids imaginable.  Sometimes the remaining glue would be on his skin for days.  My mom, who performed hundreds of EKG’s as a medical assistant, once asked the nurses “Why don’t you use the gel leads, I don’t understand it??  These leads are so old fashion, they are hurting him!?!?”  The nurse always answered that they didn’t have those kinds of leads in the PICU.  

But they have them down the hall, don’t they?  I just learned that.  Newer equipment.  Nice, fancy rooms.  Right down the hall.  When the kids who suffer the most lay in an old, outdated, run-down PICU.
This is just one of 50+ flashbacks that came rushing in, fueling the quiet rage that is still burning inside me.  All weekend long it has been building.  As bad hospital memories consume me, I have to work twice as hard to bury the rage and keep a smile on my face for those around me.  It takes so much energy to keep it all hidden under the surface.  I was caught up in these thoughts when I found myself doing over 80 miles per hour uphill on Route 55.  I calmed myself down with deep breaths, and it felt as though my expanding lungs help to push the fire back down into the pit of my stomach where it hides. 

Of course I'm angry.  Someone ripped the skin off his cheek in the OR when removing tape.  Bruising from taking the dressing off around his port.  One time a nurse failed to notice the tape that was holding his needle in place and pulled with such carelessness that his skin split open under his arm (not even where the tape was). He was not sedated when that happened. Are gel leads too much to ask for?  It has just set me off in a tailspin.  

I was carrying Gavin for a couple of blocks on Friday because he was so hot and tired.  He rested his head on my shoulder and I guess he heard me sobbing.  I didn’t realize I was doing it.  He yelled at me.  “Ty is still with you!” he said. 
Then he asked, “Do you think there is ever tornadoes in Heaven?” 
“Of course not,” is said. 
“Yeah, me neither.  Only the best stuff is in Heaven.  Nothing scary ever.”

I wish I could find comfort in that idea, but today I miss my son and I feel angry.  Tomorrow I will try again.