Friday, July 31, 2020

A Different Story to Tell


I couldn’t sleep last night. I miss this face. With so much on my mind, I’m not sure I slept at all. 

Years ago, I would have gotten out of bed and started writing a blog to clear my head. I could settle my anxiety by expelling all of those thoughts from the day onto virtual paper, so to speak.  But back then, I had a story to tell.  I shared messages of faith and hope as I navigated a life-changing journey that altered my soul. 

Last night, as I debated getting out of bed, I was weighed down by the reminder that I don’t have a story to tell anymore.  The best five years of my life are forever behind me. But after two cups of coffee this morning, I settled on the notion that I still have so much to share - it’s all just very different.

August 11 will mark TEN YEARS since my husband and I took him to the hospital for the very first time, never imagining the news that would confront us.  Brain tumor. Surgery. Chemotherapy. Radiation. The words were garbled - spilling out of the doctor’s mouth while the walls melted all around.

Ten years ago, in a small conference room with no windows, I died my first death.  The person I was just minutes earlier had vanished for eternity – just like that.  Replaced by a girl with a broken smile and a nervous edge. 

We are also nearing EIGHT years since Ty died, taking another version of my former self with him. I have been trying to pick up the pieces and rediscover the person who remains, but still I struggle to figure out who that person is.  I find that life is so sad yet beautiful… tragic yet exhilarating.  A gift to be treasured, regardless of what’s inside. 

Tomorrow, we should be hosting the EIGHTH Annual Muddy Puddles Mess Fest in Ty’s memory, and in honor of all kids like him who suffer from such an unfair cancer diagnosis.  We should be busy planning for our EIGHTH Annual Super TYathlon in September. These events mean so very much to us.  Our hearts explode with gratitude to see thousands of people get behind our cause year-after-year and gather to remember our son. But alas, 2020 arrived with different ideas and sweeping casualties for all of us. 

Since March, we cancelled so many fundraisers, including: SuperTy Bowl, Muffins in May, WOD’ing for SuperTy with Pawling CrossFit, The 90’s Party with Partner’s Gym, Party with Peppa, our first TLC Golf Outing, BBQ for a Cure, Muddy Puddles Mess Fest, Welly Walks at preschools nationwide, Muddy Puddles Birthday Parties at the Little Gym, Westlake Spirit Week, and potentially more.  Wow, what a list.  What a huge loss for childhood cancer research.

It’s no wonder I couldn’t sleep. 

Since diagnosis day ten years ago, I’ve tried to live a life with purpose.  Lou and I have redirected the time we should be parenting our oldest son in an effort to fundraise for childhood cancer research.  A day doesn’t go by that we don’t work toward this end, and that is the truth.  Not one day passes.

It is very difficult to accept that everything we have worked SO HARD for has been brought to an abrupt halt.  We’ve made huge commitments to invest in research, but the lab doors were closed before our eyes and our ability to financially help reopen those doors is in jeopardy. The reality we are faced with is nauseating. We have come too far to stop now.

Anyone who followed Ty’s journey knows it is not my style to end on a sad note, though.  So here are my silver linings – and they are pretty incredible.  Ty continues to work his magic, that I am sure of.

First and foremost.  His brothers. Gavin is eleven and we are two peas in a pod.  I just love spending time with him. He is sweet, calm and content with a peaceful energy.  And he is the all-time best big brother to Bodhi. 

Bodhi, on the other hand, is a ball of fun and mischief.  He has the exact same laugh as Ty and he loves to be funny.  And when he is up to something silly, he opens his mouth to smile wide and his eyes light up with such joy that I have to catch my breath.  It’s like getting a glimpse of Ty in the room for a split second.  And, unlike Gavin, Bodhi has never passed a puddle without jumping in it. He loves it!



Second, we are down but definitely not out.  The heaviness of knowing that there will be no mud pit to build tonight, no Mess Fest to enjoy tomorrow, certainly hurts.  Every year I have been so worried about bad weather, yet every year the clouds magically disperse, often leaving behind perfect muddy puddles for the kids to enjoy. 

This year the clearing of the clouds has emerged in a very different fashion. Our biggest partners in his fight – EntertainmentOne (Peppa Pig) and The Little Gym - have helped us clear a path forward in the form of hosting a series of Virtual Mess Fests.  Generous sponsors like Hasbro, FatSnax, and Band Aid are kicking off our fundraisers, and we are so incredibly proud to be aligned with such tremendous brands that share our passion to help kids with cancer.  Please, if you know any children who might love to get messy at home with Peppa Pig, please share the link with them.  This just HAS to be big.  Ty would be SO proud. For more information and to register, visit messfest2020.org.

That’s not all.  Our incredible community of support has already shown us that they want to keep helping, even if our events are going virtual.  The Dirty Dunk, Team Ty, and the virtual 5K are all underway, and we hope you will consider fundraising for us or contributing to an existing campaign. 

I’m doing the Dirty Dunk with Bodhi this year!  I have a bag of dirt and a kiddie pool with my name written all over it.  It won’t be the same from home, but we are making the best of it.  You can join the team, too!  Visit dirtydunk2020.com to donate or join the team.



Lou is leading Team Ty as they participate in a very small, socially distant triathlon around Lake Mahopac (nothing can stop these guys!). Please read his beautiful post here https://charity.gofundme.com/o/en/campaign/8th-annual-tyathlon/louiscampbell.



And anyone can sign up to participate in our virtual 5K. I have run a few virtual races since March, and I am 100% honest when I say that I enjoyed it just as much!  Please walk or run “with” us to help fight childhood cancer. Anyone can register here.

September is Childhood Cancer Awareness Month and we are asking businesses everywhere to consider putting out a collection jar for the month, or purchasing a window cling to show your support.  If you are interested in learning more about our “Bucket Brigade,” please email me at info@superty.org.

We will continue our “go gold” initiatives in Hawthorne and surrounding towns to honor Westlake Spirit Week, and we will be releasing a “Save the Date” for a virtual wine and cheese pairing hosted by McKinney and Doyle and Pawling Bread Company very soon!  CAN’T STOP WON’T STOP.

Last but certainly not least, there is love all around us. I leave you with a photo of this painting by Mary Pallotta.  Mary has loved Ty since day one, and she continues to show us how much he means to her.  I can’t even express how special this is. All we ever want is for our boy to be remembered.  Thank you, Mary. Our hearts are full.  









I miss him... BIG MUCH

It's been so long since I've written a blog.  Ty's Foundation recently pledged a three-year gift to support the Gift From a Child initiative.  We are so proud to be part of this incredible program that is changing the landscape of pediatric brain tumor research.  I pasted the introduction to my latest blog here, and hope you will read more.

I took my toddler to the emergency department after a sleepless night, insisting that perhaps he was suffering headaches. Wearing a bright yellow t-shirt that matched his curly blonde hair, cargo shorts and flip flops, Ty jumped and giggled his way into the sunny room at the local children’s hospital. I was met with looks of surprise and confusion by the staff, but my husband and I could see his tired eyes behind that smile and insisted on an MRI.

Just shy of three-years old, I winced when the needle pierced the skin on his arm. I was nauseated as I held him limp from the anesthesia, certain that would be the worst of it. How very wrong I was. That day marked the first of countless needles, MRIs with sedation, hospital stays, and so much worse. For two and a half years, his pain became routine, the cancer—relentless. 

READ MORE

https://giftfromachild.org/2020/07/07/big-much/