Posts

Showing posts from 2015

Coping with his absence at Crimpy time

Image
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 sha

The Long and Winding Road that Leads to a Cure

Image
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

Traditions

Image
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 m

"I am free and so are you"

Image
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 wa

Back to School Blues

Image
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

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

Image
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

Where did my baby go?

Image
...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 perf

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

Image
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

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

Image
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 childr