Showing posts from 2017

For the Love of Lollipops

I've been singing this song about childhood cancer for seven years now.  Seven years of, "go gold... fund research... cure the kids... more than four... give, give, give... please, please, please..."  And, let me tell you, it's exhausting.  I am fatigued.  But I am also obligated to honor Ty and to keep his memory alive by maintaining my promise to him (and to myself) that I will never stop fighting for him and the kids like him.  I am his mom, and this is what mom's do.  This is the only way I know how to continue taking care of him. What simply amazes me is that there are people who have been on this journey with me every step of the way, and who never left my side after all this time.  Many of whom were complete strangers to me before Ty got sick, and who are now my dearest friends.  In fact, our entire Board of Directors at the Ty Louis Campbell Foundation didn't even know me before Ty got sick, and they volunteer tirelessly in his memory.  I am beyond h

1841 DAYS

In 1,841 days, Ty Louis Campbell lived a remarkable life.  His life was filled with such great love, and this love transcends time.  It is still just as strong and palpable today as it was before he died, and I can feel him in my heart when he is near.  I never sense that his spirit is above me, or beside me… rather, he is always just behind my right shoulder, like where he sat in the backseat of my car.  Just close enough that he is a whisper in the ear and a warm breath on my shoulder.   I watched my baby boy suffer for almost half of those 1,841 days.  Seeing him under certain circumstances in the hospital were as difficult to watch as if my child was strapped to a chair being tortured.  I helplessly witnessed his excruciating pain, and when the treatment failed to save his life, I was left to live the years that followed plagued with guilt for allowing it all.    Today is a hard, hard day.  My loving son, the boy who made me a mother, was in my life for exactly 1,841 days.

The Changing of the Signs

The annual Muddy Puddles “Mess Fest” wasn’t created just because Ty wanted to jump in a muddy puddle. It’s also because Liam never had the chance to ride a zip line. It’s because when Brynlee had low immunity, she couldn’t go near anything “messy” and fun. It’s because when Riley was in the hospital he passed the time making goop, and because Jared would love to try the climbing wall but his treatment left him too weak.  Every activity hosted at the Mess Fest is planned and executed with the children in mind. We dedicate each one in honor… or in memory… of a child that has been impacted by a cancer diagnosis. We do this because it is most important that everyone attending the event remembers how this event came to fruition, and the underlying reason why they are there.  We make a sign for each child that includes a photo, age, type of cancer, and whether or not the child is a survivor, a fighter, or a forever child (for example, Ty passed away when he was five, so he is listed a

September is Exhausting

I wrote my first blog about childhood cancer awareness month in 2011. My son was diagnosed with brain cancer in August of 2010, but it wasn’t until after I saw them taking down some of the “awareness” signs from the playroom at Memorial Sloan Kettering that I learned about September. I didn’t know that gold ribbons were for childhood cancer. I didn’t know that September was “our” awareness month, and I was thrilled and humbled when President Obama signed a proclamation making it official in 2012. I always thought gold was such a perfect color to represent youth, but the dual meaning of “nothing gold can stay” from the Robert Frost poem haunted me immediately. The beauty and newness of “gold” is usurped by unstoppable aging, and there is an underling message of natural progression and eventual death that was my worst nightmare. I understood that “nothing gold can stay” but wondered about just how numbered our days/his days might be. So, September 2012 was the first “official” chil

The Emotional Hangover

For the fifth year in a row, thousands of people gathered to pay tribute to all kids who have been impacted by a childhood cancer diagnosis and to celebrate childhood in their honor at the Mess Fest.  The event was outstanding.   We had more people than ever (which is hard to imagine knowing that 2,000+ people have come year-over-year), we added lots of fun new activities, Peppa Pig was everywhere, the media coverage was what dreams are made of, and there were so many VIP families that touched my heart and made it that much more special.   The day before the Mess Fest, I felt Ty’s presence and it was SO STRONG that I was immediately at ease.   I can’t explain it, but somehow he communicated to me that it was going to be amazing, and I was 100% confident in that notion, enabling me to thoroughly enjoy that magical day. An event of this magnitude takes months upon months of planning, and an army of dedicated Board members and volunteers who work so incredibly hard to pull it off.  M

Where's My Baby?

On my way to work today, I stopped at the supermarket to drop off recyclables.   When I stepped out of the car, I had that inexplicable “mom” feeling to double check the backseat for Bodhi.   That, “where’s my baby” feeling that shakes you up for just a split second until you recall he’s safe at home. After Ty died, it happened to me all the time, but I never had that comforting relief of remembering he’s safe at home.   Instead it would be followed by the immediate sensation of my heart dropping into my stomach, a brick weighing down on my chest, and a knot in my throat because the opposite was true.   In that instant I was sucked back to reality and reminded that he’s gone forever. Slowly the instinct faded away.   I rarely look for him in my backseat anymore, and although it is a very natural progression, it still comes coupled with guilt.   I don’t want to feel any distance between us.   We are approaching an anniversary where he’s been gone longer than he’s been with us,