Wednesday, September 25, 2013

Ty was born on a beautiful fall day - just like today

He died on a beautiful fall afternoon, too.  I checked the weather this morning, and it looks like another seven straight days of perfection ahead. This weather has always been my absolute favorite, but of course now it leaves me ambushed with the sad, gut-wrenching memories of one year ago.  Thankfully, some of those memories of Ty's last days are incredibly beautiful and they keep me putting one foot in front of the other.  Whenever I recall Ty's unbreakable "smile of the day," I continue to be awestruck and inspired.  This was just 10 days before he passed away. 


Fall in New York is so incredibly perfect.  The trees are enchanting, the crisp breeze fills my lungs with purity and the sun continues to warm my face.  Days like this prove to me that God is all around.  Ty, too.  Every falling leaf is a poetic reminder of our love and loss. 

As much as I find myself smiling at my most favorite memories of Ty, I also find myself haunted by the memory of the day Ty died.  My mind often goes there, to the moment I scooped him up into my arms and cradled him until he took his last breath.  Of course, I can't recall that moment without crying and I feel such guilt when I try to clear it from my mind because I don't want to spiral into sadness.  It feels wrong when I try to push it away. 

I recently listened to an NPR interview with Dr. Jim Olsen of Seattle Children's Hospital.  Dr. Olsen recalls a couple who lost their daughter to a brain tumor, and they thanked him as they told him that "her death, to us, what as beautiful as her birth."  I am so grateful to hear those words spoken by another couple who walked in our shoes, because it reminds me that it is okay to also see the beauty among the pain.  It helps me to think of Ty in a beautiful place, and as Lou says, he brought the missing pieces of our hearts with him. 

I have said this a thousand times... I envy anyone who is pregnant with their first baby because there is a wave of true love that will take place the second that baby is born that is simply indescribable.  Of course, that love is just as profound the second time around (and so on, I'm sure) but there is only one moment when you can feel the intensity and truly understand what motherhood feels like for the first time. 

Just as powerful as that love was the second Ty was born, the pain was equally powerful the second he died.  Just as full as my heart became - so much so that I describe it as a love explosion - my heart feels equally deflated upon losing him.  Despite this, I recall his last breath and I am grateful that his passing was so incredibly peaceful.  I agree with the other couple - I believe his death was as beautiful as his birth.  His face was so angelic, so soft and so pure - I couldn't believe such a perfect child was mine.  Just as I couldn't believe it when I first saw his face.  He will forever be my greatest gift.

This morning Gavin was watching an episode of "Olivia" on Nick Jr. while eating his breakfast.  In the cartoon the teacher was telling her class that they each had to pick a vegetable to study for the school play.  One of the kids asked "is pudding a vegetable?"  Gavin didn't react, but in my mind I heard Ty's incredible little giggle.  He would have totally laughed at that.  He was always so quick to laugh, so easy to amuse, and so lighthearted.  He always "got the joke" even at such an early age - unless it was a knock-knock joke, in which case he butchered the joke but still laughed in hysterics after delivering the wrong punchline.  I miss that laugh so very much. 

I often find comfort knowing that Ty's story - and the stories of children like him - have brought out such good in people.  A couple of weeks ago a woman paid for some toys and pajamas I was buying for Gavin.  I was so shocked I didn't properly make an effort to stop her - and I don't feel I thanked her appropriately afterward.  She really caught me off guard when she told me how much Ty's story affected her and she wanted to do this for me.  I've been thinking about what to do about that, and today I paid it forward by purchasing gift cards in excess of what she spent on Gavin.  I made a few care packages and will be sending them off to families in need.  It made me feel so good to do it, and I feel reinvigorated in my efforts to keep fighting for these kids.  Isn't it awesome?  How kindness is contagious? 

The TYathlon this weekend was a tremendous success.  It was nothing short of amazing!  We had over 100 triathletes and another 200 additional runners in the 5K.  There were children who blew me away with their speed and stamina (including my nephew's James and Ryan, and my neighbor Andrew).  There was also my Mom - who completed the 5K alongside my other nieces and nephews.  I'm so proud!  But most of all, I'm proud of Lou.  He made great time in the tri and he gave a beautiful speech.  What an incredible tribute this was.  Our tremendous thanks to all that participated, and most of all to all those who helped plan such a flawless event.  It was a lot of work, everyone busted their butts, and in the end it showed.  It was an incredible day that will grow year over year.  Lou and I are still blown away by the incredible generosity toward our fundraising efforts.  We made more than $53,000 on Crowdrise alone, not to mention our generous sponsors and the proceeds we are awarded from the race registrations.  We are making a difference every day!  Thank you. 




Lou and I were proud to present a grant to Dr. Jeffrey Greenfield that will specifically fund a researcher focusing on pediatric brain and spinal cord tumors under the Weill Cornell Children's Brain Tumor Project.  This is our first of several grants that will be awarded between now and the end of the year.  We worked so hard over the last nine months to fundraise, and now we are eager to get that money in the hands of the researchers.  I can't wait to keep you all updated on those investments, and the progress those researchers will make in years to come. 

Saturday, September 21, 2013

Excitement among the sadness

September is going to be sad.  It's as simple as that.  But I learned very early on in this grieving process that if I don't keep myself busy, I will fall apart.  So... busy we have been.  The first annual Mahopac "TYathlon" is tomorrow and we are so excited.  It is already a huge success raising well over $50,000 for childhood cancer research.  We have over 250 athletes registered.  I can't thank the entire team of volunteers enough.  They made this happen and I will be forever grateful. 

In addition to the TYathlon, there is a team of wonderful women who are also fundraising for the foundation at the Warrior Dash tomorrow. Go team "warriors for muddy puddles!"  I will thinking of you all tomorrow with gratitude. 

As I've mentioned time and time again since I started this blog, September is childhood cancer awareness month.  Something I did not know in September of 2009, but became all too familiar with in 2010.  So, this is my third childhood cancer awareness month since I became "aware" myself.  This year, I can't help but think it's different. 

In my opinion, more and more people are really getting behind the go gold initiatives in 2013.  So many more foundations and support pages are on Twitter, and are sharing one another's initiatives.   I'm so proud every time I see childhood cancer foundations sharing from other childhood cancer advocates.  There have been PROFOUND blog posts on childhood cancer - pretty much every day.  I am living this entire month in a whirlwind of vivid memories from the saddest days of my life, sandwiched between the need to read what others are sharing about their own childhood cancer experiences because I can't believe how much I am connecting with their words.  It is therapeutic in the saddest way imaginable.  I feel so much less alone in my world of grief and gumption. 

Maybe it's because I've had more time to pay attention, but I don't think that's it.  I really do think more and more people are listening.  AND, I really do think more and more of the childhood cancer community is uniting to share what one another has to say.  Thank God.  As my tee shirt of the day reads, "Together We Are Stronger." (I really am wearing a shirt that says that right now - how fitting).

I can't even begin to write about the emotional roller coaster this month has been.  The truth is, Lou and I are sad.  Maybe sadder than we have ever been!  There is something about the "one year" mark that makes everything so real.  It's as if I spend the entire year living one day at a time, hoping tomorrow I will wake up and Ty will be back in my bed again.  After the reality of one year hits, for some reason that silly little world of denial seems to explode into bits and the truth hits you over the head like a ton of bricks.  It's been a year.  Don't you get it? 

NO!  I don't get it!!  I never will!!  I lay in my bed at night and I try to pray but my mind is blank.  It used to take me so long to get through my ritual of prayers... begging for Ty's healing.  Now I pray for my family and for children with cancer, but all I really want to ask is to please, please, please make it happen so that Ty comes back.  Rewind and let's go back to when he was okay and let him never ever have cancer.  I make silly promises to be the best person ever.  I say things that I know are ridiculous like, "you're God, you can make anything happen.  Won't you please just do this one thing?"  I know how pathetic it is before even asking so I can usually refrain... but every once in a while... I just can't help but ask. 

I need to be up so early to get to the race tomorrow with Gavin and my nephews in tow.  I really should cut this short and try to rest this crazy, mixed up mind of mine.  I have been torturing myself with photos, so here a bunch of Septembers for you before I sign off.  Thank you, as always, for your tremendous love and support.  I am humbled and oh so grateful for everyone who continues to care about our family after all we've been through.  Thank you. good night.  I hope to see you tomorrow.

Ty Campbell.  September 2008, 11 months old

 
September 2009, Gavin's Christening

September 2010, and so it begins

 

 2011, September
2012

Sunday, September 15, 2013

Slow weekends are the worst

Quick update on the big race next weekend.  The deadline to register is Friday and we hope you can join us for the triathlon (sprint) or the 5K by registering here.  If you don't wish to participate, but are nearby and willing to help out - please don't hesitate to email tyathlon@gmail.com ASAP.  We need several volunteers for the early bird shift (starting 5:30AM) and a few others to help out at the 5K starting 9AM.  I hope to see you there!

I've said this before.  The worst days are those spent at home with nothing to do.  We normally live such an incredibly busy lifestyle.  We have plans every weekend!  However, with the TYathlon coming up in a week, we took it easy so Lou could train in the morning and I wanted to catch up on things around the house while spending some quiet time with Gavin.  What was I thinking?

I did laundry and I cried when putting away some new school clothes in Gavin's closet.  The top row is lined with sets of two.  Two gray blazers, two black jackets, two white dress shirts, two blue ties, two Long Beach hoodies, two bathrobes with skull and crossbones.  All of these items left from when I was buying in twos for Ty and Gavin.  I took down the old artwork from our bulletin board to make room for Gavin's new school year, but of course left all of Ty's iconic pieces.  When Lou called this one a "bleeding heart" I teared up over the significance. 


Yesterday we took Gavin out to lunch and hiking at Kent Falls to pass the time.  It was a beautiful day and I couldn't shake the memories of my last time in Kent because I was with Ty.  I remembered everything about that day and shared it with Lou right down to where we had ice cream, and the various items Ty had me buy for him.  The last time we took Gavin on a hike was also a sad memory because it was just days after Ty passed away.  We needed to get out of our sad, quiet house so we took him to the Appalachian trail nearby. 

Lou and I had an even more depressing day today, and I am convinced it's because we stayed in.  We even took turns taking naps which is something we never, ever, ever do.  I always long to have a quiet weekend at home with nothing to do ... but now I realize we just aren't ready for this.  Especially not now when everything about the changing season: the air becoming crisp, the leaves turning, the beautiful breeze, reminds me of our last weeks at home with Ty.  Today I walked around our backyard with Gavin reciting "we're going on a bear hunt" - something Ty absolutely loved.

After Gavin got tired and went inside with Lou I slowly walked around looking for ladybugs, and I sat in our date place.  The very last time Ty came outside with me, we sat on this bench, I rocked him, and he told me about the "red leaves."  Today I sat there and I cried to him, "do you see the red leaves we planted here for you?  I hope you like them.  Do you like the new trees we planted for you?  The blue flowers?"  All I could picture was his incredible green eyes.  How small his pupils were in the sun, and how incredibly green they would become whenever he was outside.  It was almost unnatural!  I can still recall every single sparkle in his eye and I was so happy about that. 



The following was written by Erin Santos, and published to Huffington Post Parents on September 10.  As I read these words, every single one rings true in my heart.  Please know that I am 100% aware of how important it is to raise awareness. And, I 100% believe, with all my heart, in the efficacy of awareness.  But at the same time I understand Erin's frustration and longing for action.  Real, tangible action.   So I am prompted to include this link about various ways that anyone can help the cause in support of the case she makes.  I am her and she is me. 

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, "Awareness. What a bullsh*t word. That word is the problem." And just like that, this blog post was born.

I'm sure the word "awareness" comes from back in the day, when no one spoke of cancer. The "C" word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn't have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn't even have been enough time for me to get her story out to you. So, awareness month was a good thing back then... hey, meet this little 3-year-old with cancer... Nope, wait.. She's already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You "like" a couple of Facebook posts about childhood cancer or maybe even "share" one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don't get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan's shorts were in NYC the other day... "Oh, no she didn't," you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percentof the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children's cancer drugs aren't profitable. Ouch.

There is some awareness for ya!

So, back to my issue with this "awareness" word. The movement I want to start is this... Let's maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That's right, the front door and the back door. Every time you walk out the door, take a look at her.

2013-09-04-Isabella_Santos.jpg

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren't profitable.

Look at her picture when you walk out the door for your awareness. "Awareness." Check. But then, when you get in your car to take the kids to school, go to work, go to the gym... think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer "ACTION" Month. Do something that day that is action to save a child's life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can't think of something to do for 30 days? Email me, I'll help you with your list.

Cancer is an epidemic in this country and I'm confused as to why people aren't freaking out more than they are. Probably because they don't have it... yet. Or maybe because we are all so "aware" of cancer, but aren't taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just "SNAP," gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I'm aware. I'm aware that she's no longer with me. I'm aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I'm aware that Isabella should be in the third grade this year. I'm aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I'm aware that my 6-year-old, Grant, has nightmares about her. I'm aware that every day for the rest of my life I'm going to feel like there is something missing. I'm aware of a lot. So, the word "awareness" works really well for me in my life. Describe my life in one word, actually, and it's probably "awareness."

So, let's not make this month about just liking a Facebook e-card about cancer or reading a family's caringbridge entry and then walking away. Let's all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

Tuesday, September 10, 2013

Seriously, September?

After 9/11, missing person fliers covered every building, every lamppost, every parked car on my block for weeks to follow.  I lived one block East of the Armory, where families went to report missing loved ones.

So, back-to-school is in full effect and tomorrow is 9/11.  God help me get through September.  Then, next week will mark the day we drove home for the last time from the hospital. Ty's very last time in a car as I stroked his hair, covered his t-shirt in tears  and held him in my arms in the back seat.  How I wish that hour-long car ride could have lasted forever.  Like, if we never get home to where he is supposed to die, then he would never die. 

I was just telling Lou how I relish in the memories of Ty's scent.  His hair always smelled delicious, no matter how dirty and sticky from long stays in the hospital and sick spells.  Yet, Gavin can take one small lap around the house and end up with the stinkiest feet and sweat-smelling hair.  No matter what, Ty was always sweet.  Like milk and honey.  He was such a gift.  (Please know that I lovingly bury my nose in Gavin's sweaty hair with just as much adoration, I promise. I am his mother as much as I am Ty's and his smelly little boy head doesn't phase me one bit.)

On 9/11 we lost my best friend's brother, Andrew.  Andrew Brunn was one of the greatest men I've ever known.  He was braver than brave and the true definition of a hero.  We call Ty a hero, but he was five years old and had no idea what he was faced with.  He didn't have a choice.  Andrew, on the other hand, chose to dedicate his life to fighting for our safety and freedom time and time again.  He served in the US National Guard, the NYPD and finally, FDNY.  He accomplished all of these feats before his 27th birthday.  He was, indeed, too good for this earth.  A better man than most. 


On September 11th I was living in lower Manhattan, Union Square/Gramercy Park.  I was watching the news that morning and randomly caught the videos of the first plane as it hit, assuming it was a Cessna or something small. I was so confused.  I sat on the edge of my bed and continued to get dressed for work until the next plane appeared behind the newscaster out of complete surprise.  I called my mom, because that's what I do when I'm worried.  Then I took the elevator to my rooftop to see it with my own eyes instead of on the TV.  Never did I imagine the magnitude of what was about to unfold.  There was one other girl up there who lived in my building, but I had never seen her before.  She was taking pictures of the towers engulfed in smoke.  We didn't exchange a single word because it was almost as if it was too sacred to speak.  We were silenced by our own thoughts, fears and confusion.  We were deafened to everything around us other than the sound of nonstop sirens.

Not once did I imagine that I would know anyone down there.  I didn't really consider the casualties at all because I was so overwhelmed with confusion.  In fact, I had been helping a colleague plan a dinner event at Windows on the World for September 12th and had been at the restaurant the very night before for a site check.  In my state of shock and confusion, I even found myself wondering where we might relocate the event if there was any smoke damage to the restaurant.  The fact that human lives were and will be lost hadn't yet occurred to me.  Nor did the fact that the restaurant itself would crumble into dust shortly thereafter.

There was no cell phone service in the city because every single person was trying to get a hold of someone.  I was alone in my apartment, so I simply walked to work to find others.  There I could get online and IM with friends.  I learned about simultaneous attacks and messaged my girlfriends in DC and LA.  I called Christina who was working just blocks away.  "You know my brother's down there." she said. "We have to get the f*%! out of here and find him."  That was just before the buildings fell.  I still can't describe the feeling when I heard my friend say "The tower fell, it's falling!"  We all abandoned our phones and computers/email to watch the news in a conference room after that.  When the second tower went down, I shattered the silence of the crowded room when I was the first one to break into loud sobs and gasps.  I was choking and could barely catch my breath.  We had to go. 

With an entourage of friends and work colleagues who had nowhere else to go (Manhattan was closed off and they all lived off the island), we headed back downtown to find shelter at my apartment.  Droves of people walked the streets and over the bridges to get out.  As we marched down 3rd Avenue, a man covered in soot and blood ran in the middle of the street in the other direction yelling "you're going the wrong way! Don't go down there!"  It wasn't until that moment that I started to fathom just how incredibly detrimental the situation was.  Just how many people must be hurt and dying.  Before that I was locked in denial, trying to stay positive. 

Christina and I spent the day looking for Andrew.  We walked down to his firehouse where we eventually found her sister-in-law.  We waited. One firefighter came back, covered in thick gray dust, and he could barely speak.  He was the only one that showed up at all that day.  The only one ever to come back. 

The hours that followed dragged on for an eternity. Christina and I spent the entire day wandering and waiting, just me and her, while the others were all back at my apartment.  We checked all of the inpatient lists at the various hospitals and triages - but no patients were coming in.  "Where are they all?" I wondered, in my ever-positive state of denial. We finally sat at the fountain in Washington Square Park until the sun began to set.  Time to turn in, head home and watch the news for more updates. 

During our walk home, Christina stopped on the brick sidewalk at Union Square park and closed her eyes.  She stretched out her hand, and raised her head as tears formed in her eyes.  I didn't know what was happening and didn't know what to do but to watch her... entranced.  I don't know how long she stood there, but I know when she "came back" she started freaking out.  She cried and in between her tears she managed to tell me that she was sure her brother had just died.  That she saw him, that he reached for her, that he was totally and completely with her, and now he's gone.

They found Andrew Brunn in a stairwell that was still slightly intact.  His body was found covering that of a civilian woman, along with three other firefighters and another injured civilian.  His family was able to have a wake with an open casket, followed by the most breathtaking funeral you can ever imagine.  Movies can't even do such a funeral justice.  I do believe because he was found like this, it is 100% possible that he chose that time of day to go off to heaven.  That it is possible he was unconscious, but perhaps still breathing, until we gave up the search and headed home.  I like to think it was then that he found Christina to say "You can stop looking for me, now.  I am right here with you.  Forever."  This was his fire truck.  Ladder 5.  God Bless Andrew Brunn. 



I am just as convinced that Ty chose the very minute that he went to heaven, too.  He waited for the preacher to leave.  He waited for me to walk him to the door and return to the room where Lou laid next to him before his eyes shot open for one last stare into my eyes.  He wanted to leave during that beautiful day, while the sun was still high, so he could soar among those incredible clouds and over the red/golden treetops.  I know this with all of my heart, and it gives me comfort.  If I hadn't witnessed Christina's spirituality throughout her own grieving, I might not have been so open to these miraculous events with Ty. 

Gavin's first day of school was a success.  He was so happy to be back he ran off without even giving me a kiss or hug goodbye.  I love his nursery school so much, it is a special place, but driving up that hill was like knives to the heart.  Walking down the hall to the classroom just before Ty's was even harder.  I never had to do that before.  Last year Gavin was in the room to the right, not down the hallway to the left.  My entire drive there, and my entire time inside that school, I wore my sunglasses and cried thinking about how Ty loved it there so much, and how short his time was there.  He was so robbed.  And so are Lou and I.  We are ROBBED of the first day of school and everything that goes with it. 

Sorry.  Sucky September.  That's all I can say. 

Gavin, on the other hand, is loving back-to-school.  The only thing that he said of concern recently is that he is "gonna be mad at God forever!"  When I asked him why, he answered, "because he WON'T let TY come BACK!!"  Then he crossed his arms and gave me a "humph!"  I get it buddy.  I know.  See that empty spot to your right?  That's where Ty should be.  That's where he is!  xoxo. 

Gavin on his first day back


Sunday, September 8, 2013

September, back-to-school and all that goes with it

This past week has been so fast, I don’t really know how much I even have the energy to share.  In between back-to-school and all the other “anniversaries” we have ahead of us, Lou and I have been in constant flux.  We are capable of passing time with friends and family, but while we smile and enjoy the company we are simultaneously toeing the line as we fight back the grief that continues to chip away at our souls.  We have immeasurable anxiety and our anger is, at times, hard to manage.  We have to remind one another that the real reason we are so angry over the literal act of Gavin’s “spilled milk” is because the nagging pain of our loss has made itself more and more known over the past few weeks.

Sadness is so physical.  Grief can be personified.  If only you could see how another person is feeling, right?  If you had that ability to see it as I walked past you on a crowded street, you wouldn’t help but notice the fact that there is a steel weight – and it’s huge – that sits on my chest.  My heart hurts all the time.  It feels like it is physically being pushed downward into my lungs and stomach.  I sigh constantly just to catch my breath.  It hurts.  And it’s not just emotional.  Loss like this is a physical pain.  I look in the mirror and I can’t believe what this past year has done to me.  I don’t know why, but it still surprises me to see how visible it is – the irreversible damage that my pain has caused.  And it does not even compare to the physical pain and fatigue I suffered from when caring for Ty.  It is so different, and so much worse. 

If I thought I was helpless then… well… now I really know what helpless is.  At least then I found comfort in knowing that my boy ate one bite of my special strawberries with sugar because I prepared them with extra love.  At least then, my stress would subside as we laid face-to-face and stared into one another’s eyes with a love so great it was almost too much to comprehend.

I only wish my arms could be so tired from the stress of carrying him around with me all day.  I actually long for the stress I used to feel whenever I noticed something wasn’t “quite right” with my Ty.  Feeling that mama bird instinct and knowing that I am more connected with this small, beautiful most perfect boy than anyone else can ever know.  It was the greatest testament of love imaginable.  I had such purpose.  I was the one chosen to protect this child.  To fix him.  It was all up to me, and I was determined to stop at nothing until he was all “bedda.”  I was empowered.

Since we lost Ty, I can only thank God for blessing me with signs.  Without them, I would be lost.  Swallowed up by the sadness and stuck in a world of grief.  Instead, I have never had more faith and clarity.  During my most vulnerable times, it is the simplest things that help me lift my head again.
I have been feeling especially sad with school around the corner.  I can’t help but look at pictures of the countless children I know who are entering the first grade and wonder what Ty would be wearing if he were right alongside them.  I smile knowing how easily he would have marched onto the school bus for the first time with confidence, but not before giving me the biggest squeeze around my neck and the softest, sweetest, mushiest kiss smack on my lips.  So I walked around my backyard with these thoughts stirring in my head, and I talked to Ty all about it.  I said, as I have said many times before, “please send me a ladybug!  It’s been a while, and I really need to see one.”  Never has it happened that I get a ladybug from Ty right at those perfect moments.  Never.  BUT – even better – I almost always see one within a day or two.  And there is always a great story that goes along with it. 

Like the day after the Mess Fest.  All day long, dozens of people at our biggest event of the year are showing me pictures and telling me about how a ladybug landed on them or on their child that day.  While it made me so happy, I couldn’t help but think “What the heck, Ty, what about me?” The very next day one landed on my leg while I was playing with Gavin outside.  Ty finds his moments to reach out to me.   I’ll never understand how it all works until I’m dead myself.  Then it will finally be clear.

So the day after I searched high and low for a ladybug in my backyard, I dropped Gavin off at Nana’s house so I could get some work done at the office for a change (he has been in between camp and school for three weeks now and I have really fallen behind).  I cleaned up the office for hours.  I was marching up and down the stairs with boxes and boxes of stuff for an eternity.  Finally I was finished, carrying out the last two garbage bags to dump on my way to the car when I got nailed in the face by a huge bug.  Right on my nose.  The bug hit me so hard I freaked out, dropped the bags, shook my head wildly and stopped in my tracks.  Of course, after I got a hold of myself I had to find the bug – you all know why.    And there she was, right at my feet.  A giant ladybug.  She was so startled, I was afraid I might have killed her.  I helped the poor girl onto my hand and watched her for over a minute as I cried a river of gratitude.  Finally it was as if she shook herself out of a trance.  I watched her shake each little leg, one by one.  Then she cleaned her little black and white face off with her two front paws, slowly spread her wings, and fluttered away back to the heavens.  

I like to imagine Ty takes over the ladybugs for a short while, and he was watching/comforting me for that minute or so until the bug regained her senses.  So silly and ridiculous, I know, but I believe in such magic and that faith is how I survive and persevere. 

Here is a text message I received yesterday from one of my very best friends who lives in San Diego.
 
“Just as my husband complained that Layla was getting all wet, and I said, “let her play, she’s having fun,” a ladybug landed on her head. 




Is it just me, or are these stories that incredible?  This is just one small example!  I could fill a book with various signs that Ty has sent to those he has touched in one way or another. 

Lou and I celebrated our eighth wedding anniversary on Tuesday.  Just like any occasion over the past year, we both offered one another a “crappy anniversary” but tried our best to make a nice night of it.  We went out to dinner in Cold Spring.  He bought me flowers with some of the greenery spray-painted blue for Ty (which was a beautiful surprise but of course had me melt into tears). We were both sad, but we spent the night alone and we reflected on all we’ve been through.  We enjoyed the peace and quiet of one another’s company.  We have our moments, like any couple, but as a whole we are stronger than ever and we feel very lucky for that.  We are generally okay and I think that’s pretty incredible.

This weekend we headed down to Long Beach to participate in the Michelle O’Neill volleyball tournament.  One of our favorite days of the year.  Michelle was a beautiful girl, local to Long Beach, who also died from a brain tumor after a very long and courageous fight.  She is so loved, and she has made such an incredible impact on this community.  She went to the same team at Sloan Kettering and was long-time friends with our most loving nurse, Mary.  Just looking at the stretch of volleyball courts that blanketed the beach brought tears to my eyes throughout the day.  The fundraiser was an outstanding success and I so admire her mother for making it such a memorable day for families year after year after year.  I can only dream that we do the same with Ty’s Mess Fest.  I left the tournament feeling rejuvenated and inspired.  If she can do it after all these years, so can I.
 
Next up, Gavin’s first day of school on Tuesday.  This will be his last year in nursery school.  I still can’t believe it.  He is getting so big!  Here he is with a sparkly St. Patty’s Day hat and butterfly wings, by day, zebra by night.  Whatever makes you happy, little man.  That’s all I can say. 



Over the past week there have been some wonderful and inspiring efforts to raise awareness in the childhood cancer community.  I am so proud of what my friends and cohorts have accomplished.  Particularly Tony Stoddard for whom I have much admiration.  People Against Childhood Cancer (PAC2) have also been a wonderful collaboration of support. 

On the Foundation side, we are beaming with pride over the efforts within our community.  Gold ribbons and gold light bulbs on the front porches and local businesses all around the area bring me to tears.  John Amos loves the SuperTy book! Eric ran the Spartan Race for Ty!  The TYathlon is in a couple of weeks - still time to register!  The shoelaces have been selling like crazy!  I can barely keep up with the PRET*TY bracelet orders (a wonderful problem to have) and DeCicco’s supermarkets are taking donations at the register for the entire month!  It is all so incredible.  Especially given the fact that I really haven’t been able to put much effort behind September efforts – I can’t thank everyone enough for making all of this happen!!!  The TLC Foundation will be bigger and better year over year.  That I am sure of.  We have a very long road ahead of us, but with such incredible, dedicated volunteers and passionate members of the community, we can’t help but reap continued success! 

Thanks, John Amos!


Donate at the register all month at DeCicco's!

Sunday, September 1, 2013

Go Gold in September

Today marks the first day of childhood cancer awareness month, and as one of our board members pointed out - Chicken Mcnuggets are trending but nothing on going gold for childhood cancer. President Obama decided NOT to light the white house gold despite the request from more than 25K people who signed the petition. Of course, everyone is talking about it in the childhood cancer community, but we have to get this awareness to break out of the box and into the hearts of the billions of people who are otherwise immune to the cause.  We have 30 days to make this trend #gogold4kids.  Please feel free to save the following images and use them as your profile or cover images throughout the month.  My hope is that some day - with all we are doing to spread awareness, help families and fund research - there will no longer be a "childhood cancer community."





September is a big month for the cause, but it is also one of the scariest months for me, personally.  I have been dreading September and October for over 10 months.  As I mentioned, this September is a reminder that Ty will never get on the school bus with the other kids.  The 17th of September and the 17th of October will mark the first anniversary of the two worst days of my life.  I don't know how I will get through these next two months, and because of that, I haven't had the energy to do the things I wanted to do on the foundation side to support childhood cancer awareness month.  Nor did I commit to attending CureFest in Washington, DC, something I regret a little this morning as I see pictures being posted by all of my friends in the childhood cancer community.  Regardless, for my own mental health I needed to keep to myself for a while.  I need to focus on the fragmented, painful and downright crazy things that are swirling around in my head for now.

That being said, we do have a lot of news on the foundation side despite my efforts to keep a low profile.  (1) We have the TYathlon/5K coming up on the 21st - and it is not to late to register.  Simply REGISTER HERE for either the 5K or the Triathlon via active.com.   It is going to be a great day with fun family activities following the race.  Lou will be competing in the Triathlon, I will be running the 5K and Gavin will be participating in the kids' obstacle course.  Please join us!

(2) We have been selling hundreds of pairs of "SuperTy.org" gold shoelaces to sports teams across the country so that kids can support the cause on the field (email us at info@superty.org if you would like a copy of the order form/minimum purchase 10 pairs at $5/pair). 

 
(3) We initiated a very simple social media campaign to try and get attention from the celebrity contingency - particularly my favorite rockstar, P!nk.  Wouldn't it be funny, and wonderfully effective, if she decided to change her name to GOLD for the month of September?  Check out the website we created to see how you can join the effort to try and get her attention in a noninvasive, totally harmless way www.pinkgoesgold.wordpress.com.  If nothing comes of it, at least we tried.  But imagine she did somehow hear our cries and get on board for the cause?  The awareness she could bring would be monumental.  And as a mom herself, I just know she would fall in love with these kids and use her incredible influence to help paint the world GOLD.  We just need to get her attention somehow!  Whenever you feel like it throughout the month, please tweet at her, shoot her a FB message or post the site to your wall to get others on board.  There were about 4,000 visits to the website the first day we tweeted it out/posted to FB, but we need to times that by 100 somehow if it is ever going to trend in any way.  Please help make that happen :)


(4) I created a new line of charitable jewelry.  It's called PRET*TY and of course, Ty put the "T-Y" in PRET*TY because he is forever my inspiration.  100% of the proceeds go directly to fund childhood cancer research through the foundation.  We charm the bracelets by hand at the TLC office, and thanks to our incredible volunteers we are ready to start selling!  Please check it out, the storefront is now available at www.prettystore.org.  If you have any ideas on how we can make this effort bigger and get the bracelets on the shelves of department stores, etc., please feel free to email us at info@superty.org because if there's one thing I've learned since starting the foundation - it's that I need help, guidance, and access to resources.  I appreciate any ideas, advice or connections you might have :)

 

The Story Behind PRET*TY
I always found it so difficult to accept how little awareness – and charitable merchandise – is available to support charities for childhood cancer.  Think about all of the pink merchandise that cover the shelves to support breast cancer - especially in October.  But have you ever seen gold merchandise for childhood cancer?  I have wanted to do something to support the “go gold” initiative, and then it hit me when I looked down at my wrist.  I simply don’t like these silicone bracelets... but I wear them to honor kids with cancer.  There needed to be a prettier alternative!
 
PRET*TY is a new line of gold accessories that were inspired by Ty and all children battling cancer.  It is the perfect gift that gives back because 100% of the net proceeds are redirected to fund innovative pediatric cancer research through the Ty Louis Campbell (TLC) Foundation. 

Now that I see all of our September activities listed in one place, I am actually patting myself on the back.  Despite my efforts to lay low and enjoy Gavin while he is home between camp and preschool (school doesn't start until Sept. 10), we have still accomplished a lot!  I am especially looking forward to seeing many of you at the TYathlon, and I can't wait for the bracelets to start selling like mad!  Because I know they will.  They are too pret*ty to resist :)  www.prettystore.org

All my love to you all.  Thank you for your love and support.  XOXO.