Everybody has a story

I learned this the hard way, because I didn't have much of a story before Ty got sick.  But since my life changed so dramatically overnight and I decided to share it publicly, I have been introduced to thousands of stories.  Strangers share intimate details about their own struggles, and I consider myself very lucky to be so aware.  My eyes are open... my heart is open... most people are good and kind and life is really, really hard sometimes.  As a whole, we need to remember that pain can be so toxic it changes people and hardens them.  I have to remind myself of this every time I want to let my anger take over.  Or when I am easy to pass judgment without much knowledge, sympathy or understanding. 

Ty would want us to feel sorry for everyone.  To feel sorry for the person who seems harsh or mean, because maybe there was a life-altering event that made him or her that way.  And to feel sorry for the person  who has had it pretty easy, but who thinks otherwise and chooses to whine over a broken nail... because that person hasn't felt a love so deep or a loss so brutal - and if you think about it, that is actually sad.  Because God knows I would rather have had the opportunity to be Ty's mom and to love him beyond infinity, than to never know what that love feels like.   

This week was the very first time I was ever tasked with writing my child's name in his underwear and it felt so wrong to do it for just one.  I had a good cry this morning.  I dropped Gavin off at camp thinking about how Ty never got to go.  I pulled his counselor aside today and told her, "You may already be aware, but Gavin's brother died 8 months ago.  Sometimes he talks about him, and I want all of his counselors to know the situation and let me know if that ever happens." Whenever I have to tell someone that I have a son who died, I always present the information very casually and with a smile, because I don't want to make anyone uncomfortable.  "Sure, no problem," she answered. 

As I was being shuffled out the door because camp was starting and the kids were busily on their way, the last thing I said was "his name was Ty."  It felt so wrong because it sounded like it was long ago, as if his name was an unimportant afterthought.  I got to my car and sobbed and said to myself... "His name was Ty.  Ty Campbell.  And he was beautiful.  And he was important.  And he was Gavin's big brother and he was here and alive and the love of my life and I miss him like you can't even imagine.  And I know you can't imagine it, because even when I was aware of the fact that my child was going to die, I still couldn't imagine what this feels like."

When I got to the office I was already in a terrible mood, I was very emotional, and I had a million things I wanted to accomplish in the few hours I had ahead of me.  I was not very nice to someone at that moment and it's been bothering me since the drive home.  I just wish I stopped myself with the mental reminder... "everyone has a story, Cindy, maybe his is a doozy." 

He doesn't know that my five year old son died in my arms eight months ago - three days after this picture was taken.  That I bathed his lifeless body in the same bathroom that I use daily.  That I laid beside him in the same bed I sleep in every night, and felt his body slowly go cold over the next 12 hours.  That every night, when I lay in that bed now, I remember his last breaths and cry myself to sleep because I couldn't save him.  Everybody has a story.

When I was just six years old, I had surgery.  It was a fairly common and simple procedure, but it still required a 3-day hospital stay.  I don't remember much from when I was that young, but I remember SO MANY details from that hospital stay.  In fact, the only other vivid memory I can even recall from that time in my life was my very first day of first grade (the surgery was soon after).  I remember all of the scary x-rays and other tests at the hospital.  The rules about no eating.  I remember being bored in the bed, doing arts and crafts with my mom and longing for home.  I remember the actual surgery, when I was only partially sedated.  At one point when the nurse was wheeling me into the OR she left me in the hallway and was having a conversation with someone nearby.  I couldn't talk, I was out of it, but I clearly remember being confused and scared and feeling alone. I also remember being in the OR - I swear I do - and the surgeon was talking to me, putting me at ease, before the gas mask was placed and I blacked out for good.  I also remember the post-surgery bloodwork and the sheer terror I had of the multiple needles and the IV. 

In hindsight, what I experienced at 6 years old was certainly not a big deal.  But at the time, clearly it was a big deal to six-year-old me because I have such vivid, scary memories that stay with me to this day.  It was the fear and the pain that etched those memories into my mind.  And my 3-day hospital stay for one standard procedure is something I will never forget.  Do you know how upset that makes me when I think of Ty and all he's been through?  How my 3 short days can be compared with what he went through every day for over two years.  My one horrifying experience with bloodwork that scarred me forever was something he was forced to experience every single week to make sure his counts were okay.  My one surgery compared to his 20.  He endured three major, life-threatening brain surgeries, two of which removed parts of his skull and left him on a ventilator, semi-conscious, for days!  His pain at three years old was greater than most adults ever experience in their lifetime.  And all I could do was sit behind him and watch.  Hold his hand.  I always felt so helpless.  I was his mommy.  I was supposed to make everything better.  Instead I would whisper in his ear, "I'm so sorry, you are so brave, you will be okay baby boy."  But he wasn't. 



August 2012 - After Ty's 20th Surgery

There is a powerpoint slide that I created for whenever I present on childhood cancer.  It shows how, out of 5 children diagnosed with cancer - 1 Child dies during treatment (within the first five years) - 1 Child dies within 30 years due to long-term treatment effects (i.e. recurrent disease, secondary cancers, circulatory disease, respiratory disease) - 2 Children survive 30 years but suffer life-threatening, disabling and/or chronic health conditions, and - 1 Child lives over 30 years without any long-term chronic health conditions.  I think it is a very impactful depiction of what happens to children who undergo cancer treatment and why better treatment options need to be uncovered.  Only one out of five children with cancer will survive with few of no severe/chronic and life-threatening side effects as a result of treatment later in life.  And, as far as I'm concerned, one out of five certainly isn't good enough.  It's that simple. 

But children with cancer are also the strongest, bravest little souls this planet has ever seen.  I have a vivid memory of a young boy standing outside his door in the hospital hallway to "get some air" while stuck inpatient.  He was so thin, pale, obviously bald, and a limb was recently amputated.  He was about 8 years old, holding onto his IV pole for support, and his t-shirt read "THIS IS WHAT AWESOME LOOKS LIKE."  And that, my friends, is an understatement.  Sure as shit that kid was beyond awesome.  They all are.