Saturday, July 26, 2014

Why We ALWAYS Jump in Muddy Puddles

These are just a tiny fraction of a tiny fraction of the children stricken with cancer who have touched our lives.  Some are survivors, some are currently fighting (and winning!), but most of the children represented here are angels.  Gone too soon.  Never to enjoy the simple pleasures of jumping in muddy puddles and getting messy with finger paint and glitter.  They are the reason why we work so hard to make the Mess Fest so special.  They are the inspiration behind the Muddy Puddles Project - Celebrating kids being kids, in honor of those that can't.

The schedule of activities is truly outrageous (see below).  You will NOT be disappointed!  For those who were able to join us last year, we will have everything you loved, with extended access (no long lines) and so much more.  Everything but food is included with admission, and we hope to see you there.  PLEASE purchase your tickets in advance so we can quickly and effectively shuttle everyone in (there is no on-site parking), we can be better prepared and avoid any lines at check-in, and - most importantly - ensure we don't run out of tickets!

There is still time to register for the Dirty Dunk - you will be awarded free admission to Mess Fest for every $100 pledged.  It is a simple fundraiser to get support for jumping in the mud (but, of course, we won't hold you to it if you chicken out!).  Our professional photographers will be there to capture the Dirty Dunk in all it's glory :)  Won't you jump in the mud with me for Ty?? Go to the tab "The Team" and click on "Join the Team."

Schedule of Activities
11AM – All Day Activities Begin
Arts and Crafts
Splatter/Finger paint in honor of Princess Warrior Brynlee (Art Tent, AREA 2)
Rainbow Loom against cancer with Learning Express in honor of SuperMax (Art Tent, AREA 2)
Sidewalk Scribbles in memory of Allie (at basketball courts, AREA 6)
Slime Time fun in honor of Gaven (Art Tent, AREA 2)
Food Truck Rodeo in honor of Warrior Wes AREA 1
Sky Rider Zipline in memory of Riley Superhero AREA 3
Amusement Ride/Dixie Swing in memory of Ethan AREA 3
Fire Truck and “Go Gold” Touch-a-Truck in memory of Tanner AREA 6
Mud Pit, Mud Art and Dino Dig in honor of Kai and Ellie AREA 6
Beauty tent/Balloon animals AREA 6
Nail art and hair extensions in memory of Henley Bee
Tattoos and Face painting in memory of Penelope
Swimming pools in memory of Ryan AREA 4
MacaroniKid Bubbles in honor of Sally Sunshine AREA 4
Paddle boats and Kayaks in honor of Erik AREA 4
Bounce Houses by Jumpin' Jakes and Air Pillow in honor of Liam and Baby EJ AREA 3 and AREA 7
Gymnastics hosted by EpicStudios in honor of Chloe AREA 5
TY-Die t-shirts and SuperTy’s Candyland in memory of Ty Louis Campbell AREA 4
Batting Cages in honor of Caleb AREA 2
Climbing Wall in memory Kwesi AREA 5
Pony Rides in honor of Grace until 1:00pm AREA 7
Magic Show in memory of Amazin’ Hazen in the amphitheater – ends 11:45 AREA 6
DJ Charlie B begins AREA 3
Treasure Hunt in memory of Hazen AREA 5
Live Music Performance by Analise in memory of Zach Sobiek AREA 3
Bingo #1 in memory of SuperTy at the Dance Tent AREA 7
Glitter Bomb/Water Balloon Toss #1 in memory of David AREA 7
Food Fight #1 sponsored by Gallucci’sCatering (under 10 years old) in honor of Mighty Mikey AREA 1
Q&A with Actress Emily Peachey (The Fault in Our Stars) in memory of Shayla AREA 7
Dirty Dunk in memory of Ty Louis Campbell AREA 6
Pop Shop (ice cream)and mini-golf sponsored by MCAS Roofing and Contracting in honor of Franky Area 8
Mummy Making Competition in honor of Leslie AREA 7
Hay Rides until 3:30 in honor of Tyson AREA 6
Rescue Animal Presentation in memory of Ben at the Dance Tent AREA 6
Live Music Performance by HaileyKnox in memory of McKenna AREA 3
Whipped Cream Pie Toss (until we run out of pies) in honor of Jared AREA 4
Food Fight #2 in memory of Cole (under 10 years old) AREA 1
Cake Walk #1 in honor of Brooke at the Basketball Court  AREA 6
Mummy making competition #2 AREA 7
Live Music by Playing with Fire in memory of Rockstar Ronan 2:45  AREA 3
Food Fight #3 (limited to big kids and grown ups) AREA 1
Bingo #2 at the Dance Tent AREA 7
Glitter Bomb/Water Balloon Toss #2 AREA 7
Cake Walk #2 at the Basketball Court AREA 6
Final performance by Talia Denis in memory of Cashy and SuperTy AREA 3               

After seeing all of this... how can you NOT come, right?  We can't wait to see you there!!                                  

Sunday, July 20, 2014

I promise you, there is something so much more than this...

... And, I am certain it is beautiful.  For those of you that are desperately missing your parent, your child, your loved one; experiencing a wave of grief and despair; I hope this message finds you today. And when I find myself in a place of doubt like I have been for weeks – I hope I can come back here to this place of absolute conviction that I will see my son again.

It has been 21 months since Ty died.  After his loss, I received so many undeniable signs from him.  The ladybug above my head in Vermont in the middle of winter - the one that magically appeared one minute after I shared my ladybug stories with a new friend - was not a coincidence.  I remember at the time I wasn’t even surprised because I was so used to getting such beautiful signs from my special boy.

At the 2013 Mess Fest, there were ladybugs EVERYWHERE!  Hundreds of them!  They were landing in our hair all day.  Again, this was not a coincidence.  The picture my sister took at the Mess Fest that had an enormous orb over Gavin that looked like Ty’s smiling face looking down on him? The time Mely, Lou and I were having a quiet, very, very sad night at home and Ty’s tricycle fell off the shelf in the garage out of nowhere?  The hawk that frequently swoops down right in front of my car windshield before landing on a tree or wire above and watching me as I slow down to make eye contact.  All of these things are not a coincidence.  I feel him on all of these occasions.

But over time, these things occur less and less frequently.  I remember reading somewhere that spirits tend to make their presence known when you need it most, and perhaps this is a reflection on my healing.  That my coping is evolving and I am finding happiness in life again.  But that idea alone has had me so upset lately.  I want to get better, I want to love living again, but I still want to receive these reassuring signs frequently!  I want to know he is always with me.

When we were in Long Beach recently, I took Gavin to play in Magnolia Park.  I sat with Ty’s statue while watching Gavin run around, and I witnessed some nearby children squealing in delight about a couple of ladybugs they found.  My face was practically twitching with jealousy!  I wanted to find the ladybug!  It was meant for me!

This morning Gavin sat on my lap as we both watched TV from "Ty's spot" on the couch.  His absence was so heavy on my mind so I took a break and went outside for a walk in my backyard.  I talked to Ty.  I looked for ladybugs everywhere to no avail - I haven't seen one all summer.  I listened for our woodpecker (another story) but no woodpecker.  I recited “We’re Going on a Bear Hunt” for him as I marched through the yard, just like I used to do when carrying him, and when I was finished I told him how much I needed him and how much I missed him.  I asked him for a sign and at that very moment – I can’t make this stuff up – something significant moved in the flower patch next to me.  A frog?  I don’t know.  I started moving some of the leaves and flowers to see if I could find whatever small creature was there, but I didn’t see anything until something bright red caught my eye.  Right there, sitting on a leaf, was a tiny little ladybug.

Oh, how I cried.  A great, feel good, get-it-all-out cry.  I knew Ty was right there and in between my tears I told him how much I love and miss him over and over again.  I told him how lucky I am to be his Mommy and how incredibly sorry I am that we couldn’t save him.  How sorry I was for his suffering and how sorry I was for being imperfect because he deserved nothing but perfection.  I cried in gratitude for his presence and for the five short years I got to spend with him.  And for the affirmation that he is still with me everywhere I go.  After a minute or so I ran inside to get my camera and when I returned just seconds later, my ladybug was gone.  The fact that she was gone was even better.  A private little message from Ty to me.  I will carry this moment with me with reinforced faith that he is not gone.  That he is still right here.

Over the next couple of days I will post significant updates on TLC events and investments.  In the meantime, if you haven’t gotten your tickets to the Mess Fest yet, PLEASE PURCHASE THEM IN ADVANCE.  I promise you, it will be nothing short of an incredible, magical, magnificent day for the entire family.  Everything is included with admission including swimming pools, boating, ziplines, amusement rides, magic shows, arts & crafts, mini golf, bounce houses, pony rides, touch-a-truck, climbing walls, batting cages, live music, games and prizes and so much more!!  Get tickets here (, or join our team for the Dirty Dunk ( and fundraise for free admission!  (click on "The Team" then click on "Join the Team" to create your own fundraising page).  

Monday, July 7, 2014

Here's to Mely and Making New Friends!

Every night during prayers, we ask Gavin to tell Ty something about his day.  After the fireworks this weekend (which absolutely TERRIFIED Gavin) he said “Ty, don’t ever go to watch fireworks in heaven.  Because they are sooo scary and you might die.  I mean, die again.  And then you would have to go to Chinese Heaven!  Or, heaven in China.” 

Ty and his friend at the parade in Long Beach 2009

If there is one thing I am most grateful for since my son’s cancer diagnosis (aside from the time I had with my son), it is the people who have entered my life and fallen in love with Ty and our family as a result of following through his journey.  Strangers who have become lifelong friends and family.  Kristi, Kathleen, Donna, Mellissa, Tonya, Diana, Audra, Kristine, Ali, Jennifer, Dana, Susan, and many more – not to mention those from email and Facebook that I have yet to meet in person but with whom I feel I’ve shared a lifetime.  I believe every person who I have connected with so deeply has an inexplicable connection with Ty and we were meant to find each other.

Mely is certainly one of them.  Ty had his very first surgery in September 2010, and after three weeks fighting post-op meningitis, his first chemo in October.  Then his first brain bleed.  Then another infection and so on. By mid-November Ty was still in the hospital and poor Gavin, who was 18 months old at the time, had been passed around like a hot potato – from my sister’s house, to Lou’s sister’s house, to Grandma’s house, to Nana’s house, etc.  We were just beginning to realize how life changing this diagnosis would be (truly), not just due to the fear of an unknown future for our son, but because of how unpredictable life became with every passing day. From that day forward, Ty’s illness would dictate and ultimately define our every-day lives.  We needed someone to live with us who could care for Gavin through all of our emergency trips to the hospital and long stays away from home. 

We were desperate.  We learned about a 21-year-old girl who had been working as an au-pair on Long Island for a couple of months, but she was very unhappy.  She was also desperate, because if she didn’t find another host family to live with she would have to return home to Bosnia.  We made contact, invited her to take the train into Sloan Kettering and to meet with us in a small kitchen area on the 9th floor of the hospital (the most depressing place in the world).  She looked sweet enough and we knew that it takes a special person to be willing to live with a family like ours knowing just how hard it would be.  We said yes, she said yes, and the next thing you know she arrived at our front door at our new house in Pawling a few days later (we hadn’t even unpacked yet).  That was the first time she met Ty and Gavin and she was also greeted by my parents, Lou’s parents, our sisters, brothers, nieces and nephews.  It’s a miracle she didn’t run away screaming!

Mely caring for Ty.  So special.
I have always been in awe of Mely.  I think about what I was doing when I was 21 (how self-absorbed and immature I was) and I can’t help but admire her strength and ambition.  I took the summer off after graduating college and I remember my mom rolling her eyes and saying “every day can’t be a party-go-round, Cindy.”  Meanwhile, here is this beautiful girl who is changing Gavin’s diapers, and helping Ty put the “wub” in our coffee with nothing but patience, kindness and a heart full of love.  She became my most trusted confidant, my little sister, and my shoulder to lean on.  She laid with Ty after he died with pain in her eyes as if she, too, was letting go a piece of herself as she kissed him goodbye over and over and over again. 

She went home to Bosnia after Ty passed away to be with her family and to move on with her life.  Our happy home once filled with laughter was changed forever after losing Ty and then Mely.  Our family of five was suddenly a family of three and we had to learn to begin living with this new normal. 

I’ve written about Mely before and another incredible person who – at the time – was a complete stranger, wanted to bring some sunshine back into our home by sending Mely a ticket back to the States for a visit with us.  Kristi, who is a dedicated childhood cancer advocate, saved her money for months while working at a restaurant in the Hamptons in order to surprise us with one of the greatest gifts imaginable; and last week that gift was fulfilled when I picked up Mely at the airport for a 2-week visit. !!!!!  We are SO HAPPY to have here here!!!!  XOXOXOXOOOOO!!!!!

It wasn’t until the car ride home that I realized just how much time has stood still since Ty died.  Life has been 100% stagnant.  Nothing.  No movement.  No real energy.  Aside from the visible proof that Gavin has grown so much, you would think it was yesterday that I was running my fingers through Ty’s hair.  When Mely opened our storage refrigerator in the basement to help me put away groceries she spotted the Max & Ruby cake from Ty’s 5th birthday and looked at me with tear-filled eyes.  I said, “I know it’s totally weird.  And totally gross.  Who knows what kind of fungus in growing inside that cake but I just can’t bring myself to dispose of it.”  She nodded and said, “It’s not weird.  That is where it should be.”

Any parent in my shoes can understand the fear of forgetting, and the phenomenon of life standing still.  Because it is that impossible to imagine living – moving on – without your child.  The days pass just as quickly, but I don’t seem to feel it happening.  And when I do realize how many months it’s been and how many minutes have passed since I thought of Ty, I start to panic.  I close my eyes to make sure I can remember every detail of his hands, his fingernails, his freckle foot, his belly button, his hair, his smell, his voice, his scars... In fact, Gavin just started watching Max & Ruby DVDs during our long car ride to camp and as I drive down 684 hearing those familiar episodes I pretend it is Ty in the seat behind me and we are heading down to the hospital for our routine oxygen therapy or bloodwork or what-have-you.  In my head I silently recite “I spy with my little eye something…. blue!” as a tribute to those peaceful drives we used to have together. 

So when Mely is in the passenger seat next to me, it feels exactly the same for just a brief moment.  As we drive through Dunkin Donuts for coffee and laugh over something totally immature and silly, it feels as if she never ever left and Ty is still in the back seat laughing along with us.  Until we simultaneously remember he is not and that reality steals back a small piece of our laughter. 

While she is visiting, we wanted to see Kristi and spend time with her family, so we decided to visit with her in West Hampton Beach over 4th of July weekend.  It was such a beautiful and peaceful weekend and we could not have asked for better weather.  We enjoyed time at the beach, at the pool, and fireworks, and we all quickly became lifelong friends. 

 Kristi is a wildly compassionate person with a beautiful family and her friend, Tara, who hosted us, is equally amazing.  Tara and I are one in the same.  As I struggle to keep Ty’s memory alive with Gavin as he grows older and his memory fades; Tara sadly does the same with her two beautiful young girls to remind them of their Daddy after she lost her husband in a car accident 5 years ago.  The girls were just babies and Tara is an incredible Mother and Father under the most difficult and unfair of circumstances.

Life is hard.  This I know.  But there are truly beautiful people in this world, and I thank Ty for helping me find so many of them. 

A month passed since updating here on the blog because we have been so busy, but I have tons and tons to share and will be posting much more often over the next few weeks.  So please check in on us, share, remember Ty, fight for the other children with cancer and sign up for any of our upcoming events.  Our latest and greatest includes the Long Beach Luau scheduled for Saturday, September 20th at the Atlantic Beach Club.  All of our Long Island friends, please check it out and share with friends!