Thursday, December 24, 2015

Coping with his absence at Crimpy time

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 sharper than the last.  Even the happiest of memories are juxtaposed with the reality of how much things have changed.  

Our house is decorated.  It is beautiful and festive, and if you didn’t know better it would feel oh so merry and bright when you walk through our front door.  But that’s because the extra stocking on the mantle goes unnoticed to most. 

This will be our fourth Christmas without Ty, and I can’t remember a single thing about the first Christmas without him.  Not one.  Gavin was 3 ½ years old, I know that, and he was probably just starting to take notice of the holiday magic, but I was too absent to witness any of it. My body was there, but my heart and soul were elsewhere.  I know we got a tree, but I can’t remember doing so.  I suppose we decorated it, but I can’t imagine how.   Slowly, I am trying to rebuild family traditions that honor Ty’s memory without being mired in sorrow.  But to be honest, I still find it pretty impossible.  I am much better at coping with his absence, but it doesn’t make it any less painful.  It’s just different now. 

We continue to hang Ty’s stocking next to his brother’s.  Each year it is too difficult to imagine placing it back in the box, yet seeing it hanging there every day is equally cruel.  I will fill it with his favorite candy from Santa Clause as I have done every year, but on Christmas morning it is a strange and uneasy feeling when we have to unpack it ourselves, and the candy sits uneaten in my pantry for months afterward until one day I toss it out quickly and without question in a moment of strength. 

I wonder what Ty would want for Christmas this year.  What pages would he be folding in his toy books?  He would be 8 years old, and I don’t know what his eight-year-old voice would even sound like.  So I playback his squeaky four-year-old voice in my head and I hear his giggle when he announces “Bow and Arrow!  Guns!”  He loved the rise it would get out of me. 

So this year I didn’t resist when I saw the totally awesome bow and arrow at the toy store (Nerf, don’t worry).  I bought it for Ty without question, and that secret was mine and only mine as I continued to walk the aisles and unload at the register.  Later in the week Lou and I were talking about how we can honor him on Christmas morning.  We decided that we will watch some of his home videos before opening presents (something Gavin may end up bringing to his therapist later in life along with a long list of other things), and we will wrap the bow and arrow as a gift for Gavin… from Ty.  I am pleased with this.  I hope to give Gavin a gift “from Ty” every year from now on.  Something that is meant for Ty, but equally fun for his little brother to play with in his memory. 

Christmastime, 3 years old.  Ty pointing to the present he wants to open.  Look at that smile!

When I was searching my photos over the years, I relived the holidays from 2010 - 2012 and for the first time it occurred to me how blessed we were with having truly wonderful, happy, magical Christmases.  Easter, on the other hand, was always the worst.  Christmas was our most joyous holiday, he was feeling good and happy as can be.  Every Easter he was so sick, and endured such suffering.  Reflecting on this now, I find it so very poignant.

This time of year I am reminded of the reason for the season, but as much as I love and trust in God, I will never be able to stop asking, “why?” I used to pray to Mother Mary with such passion, and her statue at the church always looked at me with sadness and above all, sympathy.  Her eyes told me, “I know, I watched my son suffer, too.”  But they never told me, “it will be okay.”  I searched her face for reassurance.  I begged and pleaded.  But I never saw anything but, “I’m sorry.” 

When I cried to her I would tell her that I’m not strong like her.  That I can’t bear to lose him and if I had the choice to save all of mankind or save my son, I would choose my son.  Because that is how selfish I am.  I should be embarrassed by that truth, but there is no pretending when it comes to prayer.  I had no choice but to lay it all out there, admit I am flawed, and beg for my son to be cured.  I never prayed for anything so hard in my life. 

I don’t ask God for anything anymore, because it hasn't worked out for me.  I have vowed to simply trust in God and stop asking.  Instead, I say a prayer of thanks every night. Even on my worst days, I am grateful for my family, and for the time I had with Ty.  I'm grateful for my Christmas memories with the best good boy in the whole wide world.  I’m grateful for the roof over my head and the food on my table.  My son suffers no more, and I know that.  I am coming to terms with living this life without him.  I value my time here on earth, I adore every minute I have with Gavin, and I absolutely love what we are doing at the TLC Foundation – my happy place.  And when my time comes, I will have the greatest reward waiting for me.  It is that truth that keeps me going.  Merry Crimpy everybody.  XOXO.  

Tuesday, December 8, 2015

The Long and Winding Road that Leads to a Cure

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 being more than right here in this office. Ty is all around me here - he is a part of everything we do.

Meet Riley - Our First Guest Blogger!
Riley is a young girl in our community who was inspired by Ty's story. She launched "The Blue Lollipop Project" in his memory as a means to help children with cancer. For her Bat Mitzvah Project, she fundraised for the TLC Foundation and continues to support us to this day. I recently invited her to visit the research lab at The Children's Brain Tumor Project/Weill Cornell, and she got to meet Dr. Sheng Li, the Ty Louis Campbell Fellow, along with Ty's neurosurgeon, Dr. Greenfield. I asked her to post our first guest blog about the experience, and her words touch my heart.

"What I thought was already a meaningful experience became so much more. I was given the opportunity to see where my efforts through The Blue Lollipop Project have gone. On November 13, I got to visit the Weill Cornell Medical Lab for Pediatric Cancer Research. The first thing you see when you walk into the lab are pictures of seemingly healthy children who have all passed away from cancer. At first glance I felt happy, thinking that these were pictures of children who had survived, but as my gaze went to the bottom of the photos I quickly realized each one had a birth and death year. My heart stopped for a second as I processed this. It was very emotional seeing all of the kids pictures on the walls knowing that they had passed away, but at the same time it made me feel hopeful knowing that the parents of these children are so strong as they help the lab to try to save other children while mourning their own. Before going to the lab and meeting the researchers whom my project funds, my understanding was that the money I raised went to the TLC Foundation and then from there to funding multiple pediatric cancer research facilities. After going to the lab, I really made the connection between what I do and it's affect on others. I got to meet the doctor, Dr. Sheng, that the TLC specifically funds. Dr. Sheng developed some technologies for pediatric cancer research that are used all around the world. I found it so cool that the person that The TLC Foundation funds has done this. It's truly amazing what can happen when people come together for a single cause. 

This time of year I am so thankful for a multitude of things including my involvement with the TLC Foundation. I hope that people realize what the TLC Foundation does and how the funding is directly used to fund pediatric cancer research. I am so grateful that I got the chance to see the lab and meet the researchers. It is so inspiring what they do! Thank you, Mrs. Campbell for sharing Ty’s story and always inspiring me to do more."