Tuesday, August 27, 2013

Insomnia. It's Ba-aaack

I had one of my worst nights of insomnia last night.  I watched the clock until it was light out again, rolled my tired soul out of bed and poured a cup of coffee.  I give up trying.  Hopefully tomorrow night will be better. I just couldn't stop thinking about the fact that almost one year has passed (IMPOSSIBLE), and I couldn't stop staring at sleeping Gavin next to me and replaying our conversations in my head.  The tears were endless.

Gavin had a playdate yesterday.  This is a very rare thing and I was so happy to watch him hugging and playing with his little friend.  It was simply adorable (until we came downstairs to find popcorn covering every inch of the room.  Popcorn fight when we weren't looking!!). 

He had a lot of fun.  At one point I heard his friend ask, "Do you have a sister?" 
Very easily, Gavin answered, "No.  I have a brother.  Just a brother.  But he died."
"He died!?!?!  MOM!  Did you know Gavin's brother DIED?!?!"

It was all a very sweet and innocent conversation.  My friend handled it perfectly.  I handled it... okay, I think.  Thank God for sunglasses.  It just reminded me, so intensely, that Gavin has lost so much, too.  It is painful to imagine what his little mind makes of all this. 

Gavin usually seems so very fine with all of this.  He's so happy, in general.  He is so little, even the few times where he is sad over losing his brother, his emotions are fleeting.  But what I need to remember is that they are sitting just beneath his very young and sensitive skin.  That he realizes much more than we may think and that he MISSES HIS BROTHER every single day.  Last night, that became even more obvious. 

I was laying with him at bedtime and he was scared for me to leave the room.  I was talking with him about how we can turn on his nightlight, and how I'll be right outside of his room.  I would never leave him alone and he can always come get me if he gets scared. 
"Did you ever leave me a long time ago?"
"What?!?  No!  I would never leave you!"
"Yes, but remember? A long time ago when you and Daddy left at night?"
"Oh, Gavin.  We didn't leave you alone?  We would never do that!  Sometimes we left you with Nana, or Mely, or Grandma - but that was only because we had to go with Ty to the hospital.  And we ALWAYS came back.  We would never leave you forever!"
"But why did Ty have to leave to heaven forever?"

With that statement, Gavin burst into beautiful, genuine tears.  He wailed out loud for an eternity.  His pain was so real and so incredibly sad, and finally, so obvious.  I tried to tell him that Ty is always with him.  That he is in his heart, and that he is watching Gavin every day.  I told him that Ty is so proud of him. 

"No!  He's not here.  I don't want him to be invisible anymore!"  More hysterical crying.  More loud sobs.  His poor contorted face showed such a raw sadness that I haven't seen in Gavin, maybe ever. 

All night long I relived our conversation as I tried to sleep.  Memories of Ty and Gavin rushed in.  Panic struck as I thought about Gavin getting older without being able to imagine Ty getting older.  I was sick over it and I simply couldn't sleep.  Today and every day, I envision Ty playing with his little brother.  I can vividly imagine my big, five-year-old boy with the coolest hair known to man, running around the yard with Gavin.  Building Legos with him.  Encouraging him to ride his bike or follow him down the big slide.  I know exactly what Ty looks like and it isn't hard to imagine that beautiful boy standing up on his own two feet - full of health - running, jumping and playing.  But I will never know what he looks like at six, or sixteen.  How will I imagine him running alongside Gavin as he grows?  These thoughts were making my head spin as I laid in the dark all night. 

All I ever wanted was to see these boys grow up together.  My babies.  I am the luckiest saddest mom in the whole world.  After my sleepless night, I was so happy when my Gavin walked down the stairs with his incredible bed head and gave me the biggest, most delicious good morning hugs.  Today I will hug him and kiss him waaaay too much, I will tickle him until he screams, and I will let him wear his costumes wherever we go.  Because these lazy days of summer are numbered and soon he will be back in preschool for another year.   Every parent knows how fast the time flies.  Bereaved parents know this even more.  But for us, there is also a strange phenomenon where an entire year can blow by without the precious love of our life, yet it feels like time was standing still the entire time.  How is it even possible that so much time has passed without Ty here with us?  It's actually so impossible that I am in disbelief. 
One day at a time, I guess.  I guess that is how it happened.  I wake up.  I get through each day.  Some are good, some are horrible.  Today is another day and today I vow to have fun with this guy :)  I think I may need to wear a super hero costume, too.  He always makes pretend that I'm old "Aunt May" from Spider-Man.  Never Mary Jane, never a super hero of my own.  Today I might have to insist on being someone cooler than Aunt May.  Like Wonder Woman ;)

Saturday, August 24, 2013

Life goes on. Whether I like it or not.

Some days I just don't want to live my life without him in it
I haven’t been able to update the calendar in my kitchen since July.  Every two months, I erase and write in the upcoming months, filling in the birthdays, anniversaries, appointments and other plans.  That means I was supposed to write out August and September by now.  But I can’t bring myself to do it, just as I couldn’t bring myself to erase that same calendar for months after losing him.  In those eight weeks, it shows our life before we knew Ty’s cancer returned – with a hopeful “first day of school” written in – and then “Ty is 5!” written happily, a little square on the wall that I would often stare at in disbelief until I finally found the strength to erase it.  Of course, I took pictures first.

It looks like such a normal family calendar, until you look a little closer and see that Hospice was coming by one day in September for our orientation.  MRI isn’t a common thing to be on the family calendar, but we had a minimum of one every two months.  I kept track of how often Ty went to the bathroom on our kitchen calendar.  Weaved in with all of the celebratory reminders, are the very worst kind of reminders.  I still can’t believe this happened.  I still expect to see him on the couch every day.  I listen for his laughter.

August 17th was ten months without Ty.  We spent that day at a memorial for our friend’s Dad in Buffalo, who fought brain cancer right alongside Ty and who recently died from it.  Cancer, how I loathe you.

September 17th marks the day we went home on hospice care one year ago.  Then comes October.  October 4 should be his sixth birthday, and October 17th will be one year without him.  How will we survive this? 

When you are in the worst pain imaginable – when you feel robbed of the possibility of ever being happy again – you simply don’t want to hear that "time heals."  You want to scream at the people who say it because it is that impossible to imagine.  And at almost one year, I am not all better by any means, but I am doing better.  I still cry off and on every day.  In fact, some days are harder than ever and it's all so unpredictable.  This loss is one I will grieve for the rest of my life, that I know for sure.  But still, they are right.  Those words are beginning to ring true, ever so slightly.  In time, I have been able to do more and more without bursting into uncontrollable tears.  Slowly, I find myself trying to live my life again (until I get blasted over the head with one-year anniversaries).  I'm not fooling myself.  I know these next two months are going to be impossible.  I need people to keep talking about Ty.  I never want to feel like anyone expects I should be "over it by now," because I will never, ever be "over it."  But it's also okay to talk to me about everyday bullsh*t.  I'm okay enough and I kind-of need to talk about nothing important just to pass the time until these months are behind me again. 

I tried so hard to be the best for Gavin today.  I never, ever stay home alone for long because it is always too hard for me to feel such silence and absence.  But today the weather was pure perfection and we weren't up to anything but hanging out just me and G.  We went swimming in the morning, had pancakes AND French toast with extra syrup.  We made Play-Doh. I hid my tears when I filled the plastic ice cream cone with swirly play-doh because that was Ty’s favorite part.  And when I found the old pieces of Play-Doh candy shoved into an old container it was as if a rusty nail pierced my heart.  We went swimming again late in the day, even after I had already cleaned the whole yard, washed all the towels and put everything away.  I made a big dinner, which I don’t do often. 

At one point, I had the TV on the background, which is really rare, and you can imagine my surprise when I heard the very first note of the intro song for Max and Ruby.  Oh God how that hurt.  And it hurt even more when I saw the excitement in Gavin’s face.  He gasped, “It’s Max and Ruby!!” and he jumped down from the kitchen table, abandoned his super heroes and started watching it. 

Max and Ruby filled the house today, two episodes back-to-back.  It was the very first time I allowed that show to play in this house since Ty died.  I tried to snuggle up next to Gavin and watch with him at first, but that was simply too much to bear.  I smiled to hide the hurt, I scooped him up, reminded him how much Ty loved the show and I put him down in Ty’s coveted corner spot on the couch.  I stepped out on the porch, listened to the show, remembered all of the DVDs that are sitting on the top shelf of Ty’s closet because I couldn’t have them around anymore, and I cried.  Just for a few minutes, and then I felt better.  I guess I really am getting better at this. 

Ty meets Max & Ruby = Best. Day. Ever.
At his dad’s eulogy our friend described his father’s fight against cancer as one that defied the odds and he talked about how every day with him was a gift.  Even the most painful days.  It’s so wrong that I have to nod in agreement about my own small son, only five years young, but there is something so very true about understanding how special our time was together.  His life, however short, was filled with miracles and beauty.  I am so blessed and lucky to be his mom. 

This boy scattered sunshine wherever he went.  I have been watching videos and looking through pictures all night long.  Spending time with my Ty.  This one is just before he was diagnosed.  “I do art!”  So cute, and so simple.  I miss that voice!  I just love him with every ounce of my being.  Never has a love been greater or bigger or better, more pure or more beautiful.  Goodnight my sweet angel baby.  I can't wait to see you again. 

God how I wish I could go up to bed and find this again.

Friday, August 16, 2013

The Little Fighter

When Ty first got diagnosed with cancer, he was 2 years, 10 months old.  We adopted phrases around "fighting" and nicknamed him "the little fighter."  This name still rings true to Ty.  He continues to inspire others to fight on, just as he did. 

Back then we dreamed of triumph against the evil monster that grew inside him for no good reason at all.  We thought we would win.  Today Lou and I still dream of triumph.  A very unfair and different kind of triumph, but nonetheless, we still dream big.  We want to DO SOMETHING to help change this.  But we can't do it alone.  And - thanks to people like you - we aren't.   

Copied below is an excerpt from a letter I received in the mail last week.  It is a true testament to how Ty's story will continue to inspire others long after he's gone.  I promise you that he inspires and will continue to inspire me each and every day. 

"Just after meeting you at the fundraiser in April, I began feeling off.  I just wasn't feeling well for no clear reason.  Regardless, it was quite a shock to be admitted to the ICU just 16 days later.  I was extremely anemic and 3 days later I was diagnosed with CML, a rare and chronic form of leukemia. 

"The morning after my admission, I had a bone marrow aspiration and a bone biopsy.  I do not think I would have make it through the aspiration if it were not for Ty.  I thought of him and so many of the painful things he endured through his own treatment, and I found my strength through him.  Knowing that if SuperTy could ensure all of this and more, than I could endure anything, too.  And I am a grown woman!"

"Each and every time I go to the cancer center, I wear my SuperTy t-shirt that I bought the night of your fundraiser.  I am often asked about it and I smile, because I KNOW and then I explain about my SuperTy Guardian Angel, because - with your permission - that is who he is to me. 

"I just needed you to know how much I appreciate you, your family and, of course, Ty's courage, strength and candor.  I am among many that hope you will continue to share.  I am but one person whose life you have touched and I am in a much better place because of you all.  Thank You!"

Thank you, Liisa.  Ty certainly did endure much more than any child should ever go through.  I am including the photo below not to be graphic, but to remind everyone that cancer is cruel and it does not discriminate.  Someday there will be a cure.  There simply has to be.  THIS IS NOT OKAY!!

Missing my baby boy tonight and every night.  XOXO sweet angel baby.  I wish we could have saved you.  I promise not to rest until we save the next Ty Louis Campbell. 

Sunday, August 11, 2013

My Dream Come True

To say the first ever MESS FEST was a success, would be an extreme understatement.  The event was already a success when we sold 500 tickets in advance - I was shocked and overjoyed. It was already a success when I stood in the pouring rain Friday night with a crew of incredible volunteers raking mud, unloading supplies, setting up stations, moving tables, and lifting box after box after box. 

I don't know exactly how many people showed up, but I do know it was well over 1,500.  We had 1,500 general admission wristbands.  I planned on counting the leftovers to subtract and figure out how many people attended.  Never did I imagine we would run out before 1:45pm (the event was from 11 - 4)!  People just kept coming and coming. 

We had cars backed up for over 2 miles just waiting to get into the incredible Camp Kiwi.  We had 80 volunteers on rotation for the event.  I was planning for anywhere from 500-700 guests.  What a testament this was to our amazing volunteers who were unfazed when triple that amount of people came rolling in -- and they made sure this event ran as smooth as possible under such pressure.  They rolled up their sleeves and said "whatever you need."  And they enjoyed every minute of it, too.  Smiling big smiles while selling wristbands, moving supplies, executing activities and more.  It is also a testament to the incredible staff at Camp Kiwi, who donated the space, their time and their staff to host our fundraiser.  I can't say enough about that place.  Everyone at the camp executed this massive event with a tireless "aim-to-please" attitude and we are just so grateful. 

The pictures below go to show you the amazing impact Ty has had on so many families.  Just look at what he did!!  This was the proudest moment in all my life.  My son.  He did this.  I just wish he was here so I could hug him and tell him how proud I am.  So I could stand there with him next to me, in the flesh.  So I could kneel down with my hands on his shoulders and give him a little shake, "Look at what you did!!  This is all for YOU!!"  Instead I have to whisper those words into the sky above. 

I was on my feet for practically 48 hours straight (I did sleep three hours in between).   My volunteers and I worked so hard to pull this off, and pull it off we did!!!  I had blisters on my feet starting Friday afternoon but I carried on like a marathoner because the energy I felt walking around that event was something I never felt before.  Ty was everywhere.  It was the most beautiful thing I ever saw.  Thank God for my sunglasses because I don't think my eyes were dry for more than five minutes at a time all day.  They were the best happy/sad tears in the world.  I feel so lucky.  I feel so incredibly blessed.  I feel my Ty is still with me all the time.

When we were packing up at the end of the day, one of my friends and foundation volunteers asked if I ever thought it would be so big.  I told her that it was everything I dreamed it could be, but never thought it really would be.  Especially not our very first year.  I should never doubt the impact Ty has had on others - not ever again.  So, it truly was my dream come true.  I dreamed of this in January, and yesterday it came true. 

I am totally spent, but I couldn't possibly go to bed without sharing photos.  There was an article in the paper today with a video that shows some of the event, and then there are the incredible photos I pulled from our Facebook page, www.facebook.com/thelittlefighter.  For those of you who missed it, these incredible pictures can make you feel like you were right there with us.  :)  This was truly a mess fest from start to finish.  Muddy puddle, Splatter paint, food fight, whipped cream and so much more :)

credit Stas Przymylski
credit Stas Przymylski

I was sad and stressed throughout the planning, of course, and today was an incredible low after the high.  I have been asking Ty to send me a ladybug for over a month, nothing.  Then yesterday there were swarms of them all over the camp.  I had gotten dozens and dozens of pictures where ladybugs landed on all of the incredible people there.  Ty sent a shower of ladybugs to the Mess Fest and that made me happy but I couldn't help but be disappointed that none of the ladybugs found me!  Then, this afternoon, I was watching Gavin on the playground.  I had just finished crying to Lou because it breaks my heart to watch him try to make friends on the playground with other kids who came there together (siblings or groups of friends - Gavin is always by himself).  He doesn't always "fit in" and he plays alone and it just shouldn't be that way.  Then, Gavin made friends with another little boy with blond hair who loved Spiderman too.  I started to feel better and just then a ladybug flew on my arm.  She stayed with me for quite some time and when she flew off she hovered over my face before soaring overhead.  THANK YOU, TY! 


Thursday, August 8, 2013

Thank You! Ty would be so proud!

You can imagine the shock when I saw this incredible tribute to Ty and the TLC Foundation on the front page of The Journal News!

It is a wonderful article, and the video posted to lohud.com is perfect http://lohud.us/19NpAyQ.  It really tells our story with a sense of kindness, compassion and familiarity.  I am so grateful to Marcela and Seth.  Marcela, for taking the time to truly understand the scope of what we are doing at the TLC Foundation and why we are doing it, and to Seth - who was with us back in September and so very compassionate - for pulling together a fitting video that shows how much he cares about all we have been through.  The article was trending as the most popular story on the site all day!!

With only three days until the Mess Fest, my excitement (aka STRESS) has been through the roof!!  I am just so happy that this is all coming together.  I look around the office at all of the signs and the boxes and the TOYS and I can't believe it's actually happening.  Everything I ever wanted to do for Ty is represented in this room.  But I couldn't do it without the amazing volunteers who have been with us from the start.  Ali and Donna, Melissa and Tonya - what can I say?  This event is just HUGE and you have left no stone unturned in making sure it runs perfectly.  Mishel and Dana - the time you dedicated leading up to this speaks volumes.  Jen, Jessica, Lisa, Kate and Marystella, your sponsorship pursuits were incredible.  Christina, Paula, Lauren, Laura and Tyrene - without your ideas, design skills, dedication and follow-through this never would have come together so successfully.  And to the 80 volunteers who will be dedicating their time throughout the day - all I can say is "wow!"  Thank you. 

Last but not least, Karla and Ivan - for offering up Camp Kiwi - the greatest place on earth and a mecca for all things fun - and for working so hard to sure it all runs smoothly.  I can't wait for all of you to see it. 

Then there is this outrageous, mile-long list of incredible sponsors.  Whose generosity is truly humbling, to say the least:

RFR Holdings, LLC
Jones Lang LaSalle
Healey Automotive
Garon Fence Co., and Bedford Iron Works
Avanti Custom Remodeling (this is the same group that fixed up my office!!)
Sclafani Petroleum
Feenix Films
Sanders/Smith, LTD.
Red Mills Pub
Putnam Orthodontics
Attorney's Title Insurance Agency, Inc.
Eastern Jungle Gym/Best in Backyards
Elmsford Sheet Metal
Valley Pediatric Dentistry
Danbury Honda

Xpress Printing
Rev Designs
Buzz Creators
South Side Sports Bar and Grille
Sweet Peet
Eastern Hay
Fiesta Mexicana/Las Mananitas
Boars Head
Stoehman/Bimbo bakeries
PipSqueak Treats
Nestle Water
Coca Cola
Pawling Quick Stop
B&W Events
A.I. Friedman
DV Depot
Laurie Spens Photography

THIS LIST IS UNBELIEVABLE, ISN'T IT????  Thank you, thank you, thank you.  All for you, Ty.  This is going to be incredible.  Before signing off, I want to share the last bit of news about the Mess Fest.  A great friend and foundation member recently published a book that was written and illustrated by her and her children.  It is probably the most beautiful story I have ever read.  I hope you can pick up a copy at the Mess Fest :)  The Adventures of SuperTy and Gavin tells the story of how SuperTy taught the entire world to be more appreciative and to find joy in the simple things in life.  The real SuperTy certainly did just that, and this book is the greatest tribute. 

Tuesday, August 6, 2013

Outer Space and Instagram

I was driving Gavin home from camp and he was talking away in the backseat.  I was preoocupied about the upcoming event (just 4 days away!!!), so I was only half-listening until I heard Ty's name and I asked him to repeat what he was saying.

"I am going to be a space man.  And when I'm a space man I will have a rocketship.  Like Ty's rocketship.  And when I am a space man I am going to fly all the way up to the brightest star and GET TY OUT!  Because Ty is not sick anymore."  That just might be the best idea in the whole world.  I so want him to go and get Ty from that star, too!  More than Gavin will ever understand.

I love that Gavin knows Ty is in the brightest star.  I love that he remembers going to see Ty "take-off" in his "rocketship" that one time (aka - the hyperbaric oxygen chamber).  I love that he wants his brother back and I love that he said it as though he was going to rescue him.  As he could pluck him right out of heaven and bring him back.  And, of course, it goes without saying that I absolutely hate every bit of it simultaneously.  Gavin misses Ty so much.  He is so lonely and his life is just so different than what I want for him. 

I want a busy, loud house, bustling with chaos and laughter and two boys chasing one another around.  Instead I have a quiet, clean and boring house.  And Gavin misses the way things used to be, even when our days were long and sad because of Ty's suffering, our home was so full of love, warmth and comfort.  Our family is simply incomplete without Ty - and without Mely, for that matter.  So much has changed and we will never be the same.  We are coping, though, and we find so much happiness in watching Gavin.  He is such a love.

Gavin is still such a funny kid and obsessed with super heroes.  He still loves to dress up, although I haven't had to go out in public dressed up in quite a long time.  I think he is feeling like he is too big to do those things already, and that makes me feel a little pang in my heart because my baby is growing up so fast!!  My mom came to visit recently, and she brought him a spiderman cake, just because.  Look at how big he is - and handsome, too!

The event on Saturday is going to be huge.  A true MESS FEST.  I can't even begin to tell you how happy it makes me.  Every single piece of this event has been inspired by Ty in one way or another.  It is everything he ever would have wanted in a party.  And party we will!!  If there is one thing I promise Ty every night, it's that we will continue to celebrate him forever and ever.  The Mess Fest will be one, huge, messy, funny celebration!  I hope he sends me a sign soon so I know that he is happy about all of this.
TLC Foundation on Instagram
We will be using the official TLC instagram (TLCFoundation) to post event photos and short videos, so please be sure to follow us!  If you can't be there in person, I think you will love what you see in the pictures.  You won't want to miss it!  www.instagram.com/tlcfoundation
That being said, it is time for me to share some other information about instagram.  This announcement has been a long time coming.  I have just been reluctant to share because I was hoping it would just go away.  The last thing I need is to invite more anger or drama into my life.  But it's been going on for so long, it needs to be stopped..... 
There is an account, SuperTy_Campbell, that is counterfeit.  God only knows what would possess someone to make pretend that my pain and heartache is hers.  This instagram account claims to be me, Cindy Campbell.  I have never had an instagram account of my own, and I don't know for sure who this person is or why she is doing this.  The truth is, I looked at the account a few times over the past few months and the photos she posts are beautiful!  I was even a little reluctant to shut it down because I don't do instagram and liked that someone was giving Ty a presence out there - but the fact that she is posting AS IF SHE IS ME is just bizarre and completely unsettling.  She has hundreds of followers!  All I want is for her to shut down the superty_campbell page, but before doing so she owes us all an apology.  She should be forced to come clean to her followers and encourage them to follow tlcfoundation instead.  She needs to be held accountable and to understand how serious this is.
People can't continue to hide behind the internet!  To create false personas and make pretend to live a life that is not their own!  This is beyond dangerous.  People who do this need to seek help.  First it was the "remembering reilly" blog, now the instagram.  I am not the only one who this is happening to, either.  It is all just so unnerving and completely crazy.   What is wrong with people??  If you have posted to this account, thinking you were talking to me, all I can say is "I'm sorry."  I never saw your posts.  I didn't really know this was all going on.  I am just so grateful to the Warrior Eli Hoax group - a band of loving and dedicated individuals who have become internet watchdogs for dangerous and illegal actions such as this.  They have been so supportive to me through all of this, and beyond. 
Time to come clean, whoever you are.
Most importantly, please know that I forgive this person.  I forgave the person for the crazy counterfeit blog, too.  They are mentally ill and need help.  But that still doesn't make this kind of behavior okay.  It is dangerous, hurtful and borderline psychotic.  I have enough pain in my life and every day I struggle to put one foot in front of the other.  This is cruel whether the person realizes it or not.