Friday, June 28, 2013

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. 

28 comments:

  1. Hi Cindy. I've never commented before but tonight I feel compelled. Your post sounded angry tonight as you have every right to be and as every human being should be. What is available to these kiddos as treatment is wrong and the stats so unfair. Though I am in support of marriage equality and happy with the outcome of recent events, I just wish that force behind something like that could be in place to help people like you and Maya Thompson and all the other families out there that have been dealt such a shitty hand. There should be a force just as strong to change the way childhood cancer is being treated. I believe you and Maya are well on your way to building that force. I know that since I was introduced to both your stories I'll share with anyone who will listen.
    While I can't imagine what it must be like for you and your family... Your huge loss. I would like to believe after getting to know Ty thru you and your words... Ty LOVED his life. Was it too short? YES. Was it too painful? YES. But I'd like to think he didn't really know different. Ty was happy. He loves you. He loves Lou. He loves Gavin. Look at that baby's smile... What a wonderful little human being. You gave him everything you could and are still trying for so much more. My guess is he is so proud of you, and so grateful he was able to have such an amazing momma and family for as long as he could even if it was for far too short. I feel privileged to be able to share your story. I wish peace for you, Lou and Gavin... May tomorrow be even just a little bit better. Please know that you have someone in Idaho sharing your story...

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  2. Yes he was VERY IMPORTANT and he will always be. I am so sorry this happened.

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  3. Cindy although we have never met or spoken I know our paths are so similar with our little boys Ty & Kai. Yesterday was 7 months for Kai. I have not been able to read your blog posts lately, just pure avoidance I guess, but i opened this one. All I can say is thank you and I am with you. I hope our paths cross in the real world one of these days <3 Kerri Kai's mom

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  4. For all Ty endured, his smile said it all. That smile will always be in my memory and it puts so many things in perspective for me. Everyone has a story but Ty's has impacted me in ways I will never be able to explain. Thank you for continuing to share his story with us. Sending you hugs.
    Jennifer

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  5. His name was TY and he did have a story and although his life was ever so short, he did more in his 5 years than people can do in a lifetime. He made a difference and is still making a difference!!! He inspired 100's of people, he changed the lives of so many, people that didn't even know him fell in love with him, a PURE BEAUTIFUL SOUL, that will never ever be forgotten! The pain and heartache you and your family have to endure for his loss will forever be indescribable. No parent, no mother, no father, no brother or sister, nor grandparent, aunt and uncle should ever have to endure a pain that great. Each day remember his smile, remember his laughter, remember the soul you saw in his eyes, every touch, every breath you felt and remember his story will continue to live on for eternity. Ty Louis Campbell made the world a better place!!

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    1. Yes, he did, and still is making the world a better place...SuperTy always and forever. We will never forget you!

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  6. Ty has a big story...bigger than most. He's touched so very many people.
    I never was aware before Ty and Ronan...truthfully it never came up in my life -- now I stare at my boys and think of how magical the time is with them...how we all can only do what we can do with the time we have -- and we really have no clue how long that really is.
    But the other truth is that it stinks that so little has been done for kids and this disease...why aren't people more upset about this. I'm trying so hard to share with people and show them these kids...their eyes...their stories...
    People lose the message of love and life when they get caught up in STUFF and THINGS and forget it's about people and relating.
    Thanks for adding a lovely voice to this world...you and Ty together are changing people.

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  7. Every time I read one of your posts about Ty...it's a gift...Thank you.

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  8. Morning,

    Many thanks for continuing to share " Super Ty's " - and his family's - courageous and heartbreaking journey.

    " Super Ty " will always be my " Super Hero. "

    All the best,

    Rob Swan

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  9. Thank you for continuing to write and for being so painfully honest and transparent about your story. I am in tears reading your description of Ty after you dropped Gavin off at camp. I don't think you're crazy at all for adding "His name is Ty". I think it really needed to be said and I thank you so much for sharing your heart like that. Through my tears I was cheering you on. You never back down and you never let anyone forget how beautiful and amazing Ty really is. Thank you also for sharing about the statistics of what happens to a child after they are diagnosed with cancer. I have been following your blog since before Ty died and today was the first time it really clicked for me the horrors that kids go through even 30 years after diagnosis. I got a tattoo recently on my foot of the gold pediatric cancer awareness ribbon. I get asked about it all the time and I always share Ty's story. Thank you for educating your readers along the way. Ty and Gavin are so very lucky to have you as their Mommy.

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  10. I think of Ty and your family every day. Since I learned about Ty and Dyrk and Ronan and Teddy and Caden and the dozens and hundreds of little babies who had to leave this world and their loved ones behind, I can't be the same. Nothing can ever be the same again and the world needs to become enraged at this. I am enraged by this. I am also devastated by this but I wouldn't have it any other way - to be unaware. Ty left indelible impressions on us all and God willing, we'll be able to continue to share his story and fight the good fight. Thank you for continuing to post and let us know that our anger is also fueling something important. One event, one moment, one breath at a time.

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  11. Thank you, Cindy!

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  12. I also think of Ty and your family every day. Besides raising awareness for pediatric cancers, you inspire so many. I for one will never take my kids health for granted, because of you. Because of your little boy. I tell everyone I know about your blog. I know you are making a difference. I also know it is no consolation for your loss. I pray for you always. There are no words adequate to express my sorrow for the loss of your beautiful baby. Thank you for being the woman you are.

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  13. Dear Cindy,

    His name is still Ty, and will always be Ty. Nothing about Ty will ever be an unimportant afterthought. He’s actually a constant thought on many people’s minds. For more than one, he’s the first and only thought. A thought with a strong purpose, a lifelong lesson like there are few, an example of courage and perseverance combined with innocence and beauty. A constant thought that is being taken very seriously. He is beautiful, there’s plenty of proof of that. He IS very important and he IS Gavin’s big brother. Nothing will change that.. He was here among us, and still IS, we just can’t see him or hear him. Sort of like when you were pregnant with him, you could not see him or hear him, but he was with you the entire time. Back then he was just one breath away, today he’s again just one breath away. Back then you knew you’ll get to meet him some day. Today you know the same. Ty kindled a flame that cannot be turned off, not even with the ocean.

    Stay strong. We love you.

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  14. Another amazing post, by an amazing mom, about an amazing boy! God Speed!

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  15. Hi Cindy- Gosh I love to read your posts. You are so real and talk about what this life is all about. Ty has brought all of us together and he will continue to do so. His name is Ty. He certainly changed my life. He is Tys brother. Your son forever. Thank you for bringing him into our lives

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  16. Always and forever in my daily thoughts and prayers Campbell Family. I remember having my tonsils removed as a matter of a fact you would have thought you were writing about my surgery story. I remember having my arm broke in 3 places and having to have it reset...I remember the fear of it all...and these are NOTHING compared to what that baby endured while he was here on this earth. God Bless You Cindy. You are always on my mind and in my prayers. His innocence, struggles, endurance and grace are gonna change the world as we know it! His story will live on FOREVER.

    ~Michelle Hughes, North Ga.

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  17. I always wish I could reach out and give you a big hug. Every picture of your little Ty I see brings tears to my eyes... tears of sadness he is not here but tears of joy at what a wonderful boy he must have been. I am in love with his smile and in awe of your resolve.

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    1. My thoughts exactly!

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  18. Hi Cindy - you said I "was" Ty's Mom. You will ALWAYS be Ty's Mom! That will never ever be taken away. There is a bend in the river, that's all.

    I am so sorry for your loss.

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  19. Sure as shit he was awesome! I love that.

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  20. Cindy;
    I am a faithful reader of your blog and Ty has changed who I am forever. Ty made an impact on me so huge there not enough or at least the right words to iterate to you how your beautiful little boy made me better. What I wish second, only first to stopping abuse of children and all child cancer (guess that is two but I feel it is one), is that I could have my babies over again and be a better mom. I have to dry my tears each time I read about your pain and I cry to will away your hurt. But I also need to tell you about my weekend and what knowing Ty enabled me to do but is also a confession of my need to strive to be a better mom. All I ever think about is the Campbell family. Sunday we had been in an airport since 3 am trying to get home. It’s a long story of why we were there but to set this up, my little boys spent 2 days in a car driving their Grandma to see her other children and I and my little boys were trying to fly home. My husband works for the airlines so we thought we would try to use his so called flight benefits (first time in 8 years). I use benefits lightly. We were not able to get on the first 5 flights which were our best option. My little guys (4 and just turned 6) were hungry and tired and getting hyper tired). A wonderful gate agent told me it was not likely I would get us home. Hotels in the area were sold out for the 4th of July weekend. Long story short, I finally was able to buy a ticket but had to take connecting flights. We had a 2 hour lay-over in another airport and we were on a very quiet end of the airport with one of those moving sidewalk thingys. The boys asked if they could walk back and forth. After being in an airport since 3 am and it is now 2 pm I said sure. They needed to spend energy in another way besides fighting each other and picking on each other. I was right there watching like a hawk. They were respectful of anyone who was on the walk and moved over if needed. (Had it been busy I am a smart enough mom to have never permitted this). Two old ladies stopped by me and scolded me for “letting them play like that.” I lost it! There was no danger, I was watching, they were respectful. I have to admit my sins, it triggered me to lose it with the ladies and my patience with my very tired, now hyper little boys had run out. Then I remembered the Campbell family. I took a deep breath, let a few tears escape for my reaction not toward those ladies but toward my little boys. They were being little boys and I lost it. If I could go back, I would tell those nosy old ladies about Ty and then I would have leaped over the side of that moving walk and do exactly what my boys were doing. Ty keeps making his mark and making his impact, Cindy, Ty is everywhere reminding us.

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  21. Cindy,

    You need one of those t shirts to wear because from where I'm sitting, YOU are what awesome looks like!

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  22. Hi Cindy. For the longest time i just stared at the picture of Ty. I dont know how to describe this, but there are so many emotions in his face. His smile is brighter than all the stars but I also saw sadness in his eyes. Its mixed emotions. i feel so so bad for you. The fact that you wake up every morning is already a superpower. I often reply to you and I hate my replies because I want to write things to make you smile but then i read my responce and its usually so very sad. I am sorry that I cant cheer you up. I just can not believe that Ty is not here. I believed so hard that he will make it. Cancer is just so fucked up. Its just so wrong that kids have to suffer. And the messed up part is that in 2013 we have no cure for cancer, and the little kids have to suffer this pain and leave this world way too soon. WAY TOO SOON before their moms and dads. Are we really such a messed up world that we need dead babies to teach us how to love, cherish, be better parents?! Did we really need Ty story for us to realize how much we need to love ur babies and do good in the world?! I am sorry again, that I cant cheer you up. I miss you baby boy. I am sure I knew youin my previous life because I cant understand the connection and love I feel for you.
    This is a quote just for you Ty.
    The souls must reenter the absolute from where they have emerged. They must develop all the perfections;the germ of which is planted in them;and if they have not fulfilled this condition during one life, they must commence another...until they have acquired the condition that fits them for reunion with God.
    Kabbalah (Zohar)
    I know you have fulfilled it all and you are pure and you are with God.
    Miss you baby boy.

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  23. Thinking of you Campbell family. I hope all of the holiday celebrations werent too difficult. XXOO

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  24. I am so sorry for your pain. Ty was surely amazing.

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  25. I think it's very likely you remember the OR. People are often fully conscious going in there, and only lose consciousness after general anesthesia is given.

    I was in the hospital for three days also, a few months ago, to get my spine fixed. I was scared going in, but the moment I hit the hospital lobby I looked around and thought, "There are a lot of people here who would do anything to switch places with me." Having been under general anesthesia before (another attempt at fixing my spine) I knew the risks were low, and my problem was not life-threatening. I thought of the kids going into the oncology ward, and knew that if they could face something so much worse, I could face surgery.

    Yet messages like yours - that all our stories matter - are also vital. My pain is very real to me, even if someone's is worse. I try to give myself a break on days I can't get up. Recognition from someone like you validates all the more how real each of our struggles are to us, even if they cannot possibly compare to your own.

    I'm going to make an extra effort in life to be sure my nieces have nice muddy puddles to play in, and perhaps splash a few of my own. we're not too old to enjoy them, are we?

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