Monday, January 28, 2013

Ty in the sky

Every single time I step outside at night, I look for Ty in the sky.  If there is a bright moon, or a twinkling star, especially when the North Star is shining bright (the brightest star in the sky and the one Ty "picked" to be his star), it's like I exchange a little secret love note with him.  A quick "I love you" straight from my heart to his.  Every single time.  Tonight I was driving home from my mom's house, which is almost a two hour drive north, and "Ty's star" was guiding me home the entire time.

I hope that never ever goes away.  I hope there never comes a day where I am too preoccupied with my life that I forget to look for Ty in the sky. 

Actually, I don't know why I am even worried that could possibly happen.  It's almost laughable.  For those of you with children... have you ever had a fleeting second where you weren't sure where your children were?  I used to get it when Ty and Gavin were small babies the most.  Like, if he was sleeping in the swing and I was doing the dishes lost in deep thoughts, I might jump and quick look at the swing to make sure he was still there, sound asleep.  I get that a lot now, because I really don't know where Ty is.  Only, there's no relief in jumping up to see him safe and sound.  I don't think that will ever go away.  And I'm okay with that.  I don't ever want to stop looking for him. 

I love this picture so much. It was during the Halloween fair in Long Beach. Ty had just finished his first round of high dose chemo. His hair didn't fall out yet.  I remember we were back in the hospital a couple of days later with a fever. I just love how he is looking at me. How he is reaching for me. I just want to grab hold of that hand. He loved me so very much. He made my life complete and gave me such purpose. I love him more than words can ever do justice.



I still haven’t taken down my Christmas tree.  Everything else is packed away, but I can’t bring myself to take down the now dead tree in my living room.  It was the hardest thing to put up, and now it’s the hardest thing to take down.  I know Ty picked it out for us.  The biggest, most perfect tree I’ve ever had in my life.  It is covered in ornaments that remind me of him.  New and old.  Candy ornaments, photo ornaments, super hero ornaments… It has become our routine to sit in what we call “The Christmas Tree Room” and admire our tree every night while Lou and I catch up before bed.   We call it that because it is our living room, with my grandmother’s furniture, that we otherwise never use.  At Christmastime it is transformed into our favorite room in the house.  Every night Lou and I sit and talk about what Gavin did that day, about missing Ty, the foundation and all that’s going on, our friends and family.
 
Last night Lou found me in the chair in front of the tree crying after he put Gavin to bed.  We didn’t talk at all, he just scooped me onto his lap and we snuggled and cried and felt better afterward.  Sometimes that’s just what you have to do. 

Thanks to a christmas gift from Aunt Debi, Gavin has discovered his love for Legos.  Thanks to the generosity of our great friends in Dallas, Lou and I will be able to take him to Legoland for his birthday in April.  I can't believe Gavin will be four in three months.  I made the mistake telling him about it, and now he wakes up every morning asking if it's his birf-day yet. 


On Saturday, we were supposed to go to a birthday party at a place called "Tumble Jungle" in Connecticut.  Gavin was so excited.  When we got in the car, I became lost in thought (as usual) and was driving on auto-pilot.  I ended up going 20 minutes south on highway 684 instead of getting off on 84, which means I was naturally on my way to the city (the hospital).  I pulled over and googled directions without realizing the address I pulled up was different than the one I pasted into my calendar.  I plugged it into GPS, drove another 45 minutes and ended up at the wrong place, at the wrong kids' birthday party.  Gavin was ready to go hog wild in the gym when I realized that I didn't' recognize a single person.  I asked the girl at the desk, realized I went to the wrong location, and had to pull Gavin out of the birthday party while he cried in confusion.  The whole thing set me off on a downward spiral.  Driving home I realized I was in Newtown Connecticut (when I was supposed to be in Norfolk) and I drove past sign after sign after sign in honor of the shooting victims.  I couldn't shake the sheer magnitude of the sadness that engulfs that town, and I couldn't stop thinking about all of the mothers. Our tragedies are very different, but we share the same pain and my already broken heart bleeds for them all.

We missed the real party, so I took Gavin to the carousel at the mall before going home to try and make up for it.  I ended up bumping into an old friend from college and we had a really nice lunch together.  She, her mom and I spoke about the loss of Ty, and the loss of her brother.  We talked about butterflies and ladybugs and all of the painful beauty that has come from our losses.  Gavin rode the carousel with her two beautiful daughters and he left the mall happy. 

Me, on the other hand... I was still a wreck when we got home.  I didn't think I was going to pull it together to go to the Wingbowl that same night.  I was way too emotional!  At one point, Gavin asked me, "Mommy, why are you crying?  Because you miss Ty?"  He knows why, poor baby.  It made me sad to know that he is so in-tune with how I'm doing and why.  Then I told him if he gave me a hug I would feel better.  He gave me the best hug imaginable, and I faked a big smile and wiped my tears for him.  Within minutes, I was crying again and he said "Mommy!  My hug didn't work!"  He gave me another one, and I finally pulled it together for him.  I wiped my tears for real and got ready to go to the event.  There was a fundraising table set-up for Ty and I wanted to be there.

Elaine, a friend of mine and Ty's for about two years, drove three hours to go to the Wingbowl just to show us her support Friday night.  It was totally unexpected and our long-overdue, in-person hug made my night.  I realize now, why I felt it was so important to re-apply my makeup and get to that crazy event :) It was all worth it to finally meet the woman who has been so kind to us for so long.  I always say that when people hear Ty's story, they either get it or they don't.  Despite having her own hectic life filled with work and small kids, Elaine has embraced the cause and she totally gets it.  You all do.  

I will share details about our meeting with some of our medical/investment advisers in a separate post, but I do want to close with the strongest message that I took away from those meetings.  Ty - our beloved boy - was a real miracle.  Our neurosurgeon, when he presented us with a surgical option after Ty's cancer metastasized, expected surgery would give us another summer with Ty (2011).  Never did he imagine Ty would do so well afterward.  Our other friend in the field who desperately researched treatment options for us at that time, was met with nothing but surprise that Ty was even alive.  No one had ideas or answers.  Instead, they fell silent when they learned about Ty's case.  Much to everyone's disbelief, Ty lived for a year and 3 months with no evidence of disease after that.  We made the most beautiful memories, never letting his condition stop us from taking him places and experiencing things.  Whenever I question whether we made the right choice for him, I remember that he went snowtubing, he went to preschool, he went to a carnival, he met Max and Ruby, Derek Jeter and the Jets!  That time with Ty was a miraculous gift and I will never forget that.  I believe God answered my prayers and gave us that time with him.  Always believe in miracles.

PS - I think Ty has a best friend in heaven.  This morning, the first thing I saw when I sat down with my coffee was two bluebirds in my backyard.  They stayed for almost 1/2 hour.  Then, driving to my mom's today I saw two hawks flying above.  I wonder who he is busy playing with :) 

42 comments:

  1. Today my Aaron is five. I have been thinking about you and Ty. Thank you for letting us be apart of your life. I have learned to let go and enjoy the crazy of four kids. Because of you I kiss a little more, hug a little more and make sure that they enjoy being just kids. I did this before but now it is so much more. Because of you... Thank you so much for being who you are. With love from the Wood family Little Rock, Ar

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  2. P.S. I got him a superhero cape and mask.

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  3. I just found out that a little warrior named Bradley joined Ty yesterday.

    https://www.facebook.com/bradleyallenstory

    Knowing what a wonderful little guy Ty is, I am sure he was showing Bradley around and making him feel welcome (and they were probably heading out towards the best muddy puddles they could find).

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    1. Maybe his new best friend... RIP

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  4. Gavin is so adorable! The way he brings you so much comfort at such a young age is beautiful. He just melts my heart!

    I'm so sorry you have to take the tree down soon. Little things like this now become big things when there is so much meaning behind it... Ty chose that tree and now it's time to get rid of it...so very hard to do and I totally understand your pain. It rips at my heart even thinking about it. I am sending you so many hugs right now... But remember even when you do take the tree down Ty will still be there with you. I love the picture above with his hand out to you. He really does love his mummy big time.

    I would so love it to be Jacob that Ty is flying high with and having so much fun. I often asked him if he has met Ty yet or I look at a picture of Ty and ask him if he has met Jacob yet, I really hope they are friends. I would so love for this to be the case but I also know there would be many other people hoping it is their loved one. Ty is just so loved by so many... What I do know is that whoever Ty is with he will be taking very good care of them and having the best time ever :) xx

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    1. Oh Michelle, I know Jacob was right there to welcome Ty from the very beginning. They are friends for sure! I have no doubt about that. He and your family are in my thoughts always.

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    2. Oh Cindy, thank you! You really lifted my spirits after reading your reply even if it did make me cry. Again! I have been having a sad day as today should have been Jacob's first day at school. He was so looking forward to starting school with his brother this year. I did have a lovely sign however when I took Connor outside to take a photo this morning. There were several butterflies flying around but one in particular just flew around Connor for some time. It brought a huge smile to my face... Jacob was there with Connor today after all. As for the other butterflies I believe they were Ty and his other friends ready to go and have some fun at school as well :)

      Thank you again. Your words meant so much to me. I really do believe our boys are together and I do believe Jacob would have been there to welcome Ty as well. Bless you Cindy, you are a beautiful woman. I know you will do amazing things for future Ty's and Jacobs. xx

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  5. I am so glad you get little "visits" from Ty. When I lost my twins, I was so afraid that they may have thought I failed them. One day whn I went to lay flowers down for them I said..."I hope you are happy where you are and I hope you know I did everything I could for you. I hope you are not mad at and decisions we made and love me for trying." With that 2 squirrels came flying down a tree truck running like crazy kids in the best game of tag ever. I knew then that my girls were ok and they were forever with me. That was almost 15 years ago and I know it is hard to believe now, but it does get eaiser. I pray for you and you little warrior...I a addicted to his smile! Be strong Cindy....you are an amazing person!

    Debbie

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  6. You never fail to make me bawl my eyes out. I cannot comprehend your pain...but I have to say that with a but. I have experienced things in my life 99.99% of people never will and the pain from those experiences will forever haunt me. Nonetheless, it is nowhere near the same. As I sat here reading this blog my other monitor had a picture of my healthy twins and I can only pray (100% of the time) that they stay forever healthy, that I don't have to know what you know.

    You are beyond amazing, beyond unstoppable. Ty was sooo lucky to have you - and you him. Oh how I wish you two didn't have to be split up, or Ty and Lou, too. Or Ty and Gavin, too. Or any of us and Ty, too. His mark on this planet will be huge. It already is and it's just getting started, in some regards.

    I am always sending you warm thoughts and constant prayers and love, as are my family. We are all better off because of you and your reach. My boys may not know it today but they will as they get older. When I personally show them how to play in muddy puddles, I will explain why I'm not the average mom screaming to stay clean. And it will always be in honor of Ty and the Campbells.

    I should hear something this week from my Alma Mater about my request to outfit our teams in gold in September. I'm very hopeful that I'll hear something positive. I will keep you posted.

    Much love,
    Lori

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  7. “Mother love is the fuel that enables a normal human being to do the impossible.” ~Marion C. Garretty

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  8. What amazing boys you have. Gavin who is so in tune with you, and of course Ty who still so clearly lives within you and always will. I'm so so sorry you lost Ty. It's just terrible. Your honesty, your faith, and your love continue to inspire me every day. Sending you thoughts of love and hugs from Seattle. - Daniella

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  9. That is a great picture of Ty!! I can see why you just want to grab that little hand and scoop him up! Lou is so great Cindy....to hear how he just scooped you up and no words spoken.... so sweet, you guys are soo good for each other, two amazing people with two special boys!! Sometimes God gives us miracles we just may not be able to see and I really do believe He gave you that time with Ty to make precious memories! What a great sign from Ty that he has a friend! So comforting to know! Never stop believing! Signs are always everywhere it's just that we have to be open to seeing them! As long as you believe you will always receive them! Thinking always of the Campbell family!

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  10. Another beautiful post, as always. I'm sure Ty has many many many friends. There can be no doubt about that.
    On the Christmas tree note - have you considered making a candle holder from a portion of the trunk? I'm sure you've seen them before - where they're laid down horizontally, with holes drilled in the side for candles? then you could have Ty's tree out all the time, with candles lit for him... I will see if I can find a link with a picture in case you don't know what I'm picturing...

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  11. this is what I had in mind... http://www.google.com/imgres?imgurl=http://img3.etsystatic.com/000/0/5723984/il_fullxfull.144816735.jpg&imgrefurl=http://www.etsy.com/listing/47255051/mountain-laurel-four-tea-light-split-log&h=1125&w=1500&sz=314&tbnid=SSuJhF8HORGnuM:&tbnh=129&tbnw=172&prev=/search%3Fq%3Dlog%2Bcandle%2Bholder%26tbm%3Disch%26tbo%3Du&zoom=1&q=log+candle+holder&usg=__f6tzoQ9G6Zl_e_pZQdPZuXwT3pI=&docid=w7X9BZCt3oJxnM&sa=X&ei=ceIGUe_wF5KJ0QGa5IHgBQ&ved=0CFMQ9QEwAQ&dur=1687

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  12. Cindy, you already had me in tears with your beautiful words when I read about our meeting. I wasn't sure if you were going to be there or not but I am beyond thrilled that we had the chance to finally meet. Your hug lasted all night. I have been telling everybody about how I finally met "my idol". Thank you. I will NEVER stop telling SuperTy's story and fighting for awareness and funding of pediatric cancer.

    All my love ALWAYS,

    Elaine Hinkle

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  13. Hello.. Great post again.. Some thoughts about the tree..cut the top part where the angel sits (Ty) and save that so you will always have a piece of his tree and this is going out on a limb but can you hang some of the ornaments around the house? I have some hearts with my Dads pics in them and after Christmas I hang them in the kitchen on knobs and in my bedroom.. However, they are not that fragile.. Just a suggestion..

    Love Gabrielle

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  14. Oh,how you describe the angst of your sorrow of wondering where your beautiful Ty is and how is he doing. The sheer panic of when you realize you have been in deep thought and going to make sure the baby is ok gives us just a feel of what grieving parents are feeling. Your words speak volumes and your actions of everything you are doing with the foundation is just incredible. The picture of Ty holding out his hand to you is so sweet. Just keep swimming unstoppable mom! Your little ladybug,bird,hawk is always looking out for you.

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  15. I had to share my experience with you.( I met you at Bernice's funeral)The other day I was driving to work and I saw 2 hawks and I automatically thought of Bernice and Ty . So while I'm sitting here reading your story about the hawks my fan light which doesn't work flickered on twice . Your strength has made me fight harder each day to be a better mother to my child .

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  16. To love Ty is an honor that I will cherish all my life. I thought I knew love before, and I did, with a birth of two of my boys I did and still do but I love Ty also so very much. I hurt for everything he didn't see for everything he didn't experience but most of it I hurt for you Lou and Gavin. Sometimes I just want to give my kids the biggest hug and I rush home and it feels to satisfying and to know that you are oly able to look for your baby in the sky is killing every part of my body. I love Gavin because he is so smart and he knows what to do when you cry. Ty was is and forever be a miracle however it's not enough. I wish he would grow up and show us all what a miracle truly is. I also wish I could reach inside your picture and touch his hand. He is unreal he is so breathtaking. I miss you baby boy.

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    1. That's a beautiful comment and I added u on Facebook, and I was happy to see TY'S beautiful pic as ur default ... Ty really has family EVERYWHERE!

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  17. Love the pics......Gavin is getting soo big. Enjoy him to the fullest Cindy, because as u know, time flies. I have a 6 1/2 yr old son and today he was laying on the couch. Well, I was sitting by him and I was rubbing his hair and he looked so much like Ty that I had to take a 2nd look. I can't even imagine all you have been thru and still are going thru. The pic of Ty is adorable and the way he's reaching out to you..screams volumes...he's always reaching for ya...you just can't see him...but he's always there.
    Prayers always. Betty Warren, Beacon, NY

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  18. Thank you for your updates Cindy! They can make us cry and smile from one paragraph to the next. Your story continues to amaze and inspire us. Ty and Gavin are special boys!

    Always in our thoughts and prayers!

    The Stewart Family
    Nebraska

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  19. Thank you again for sharing so much of you. You are an inspiration & we are always thinking of The Campbell's. Xoxo

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  20. I see signs of Ty today, in HONG KONG!!!! The sky is unbelievably beautiful today and I saw some really special, pretty clouds!! Too bad I can't upload the pics here, but looks like Ty is traveling aboard and having fun here :) I'm so proud that he came all the way for me!! :)
    All my love and prayers
    Jenika

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  21. last week i was at a doctor's appointment and it was FREEZING out, while i was waiting for the doctor i looked outside the window and 2 small birds were flying around the clouds, then 2 others joined, they flitted around, and then all 4 small birds flew off. No other birds whatsoever in sight. As i sat there i started thinking it was Ty and his little friends...i know it may sound crazy, but it was just what came to mind.

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  22. Ty is surely here and impacting the world! As I walked through the wet, snowy parking lot with my 4 year old daughter this morning, she said, "Mommy, we missed the puddles." Rest assured we turned right around and jumped in those cold, wet puddles! How she smiled. :)
    Thank you for sharing your Ty. And the picture with your latest post is absolutely beautiful. Sending prayers and hugs.
    Wanda

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  23. Thinking about u today Ty, I see u laughing with a big smile on ur face surrounded by thousands of kids, ur heart overflowing with love and sending mommy tons of memories to fill her head with u all day... Ur eternal baby, ur here , ur there , ur everywhere .. On a level we don't even have a word for other than beautiful... You are missed by many Ty, but one day we will all be joined together and that's a sure thing! Love u guys... Jessa

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  24. Although I think about Ty everyday, there are some days when I am overcome with emotion for you and Ty. Today was one of those days. I miss him so much and I never even met him. I'm sure Ty is so proud of you Cindy. You keep going and your pain and saddness motivates you to work harder...many people wouldn't have the strength. You are amazing.

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  25. Tonight I picked up my 3 yr old from grandpa's house and he was having a tantrum about something, so as we walked to the car I saw a bunch of puddles and througg my sons whining I said...look Collin...a puddle!! Why dont you jump in it!! And in that moment he forgot about whining and turned to pure joy as he stomped his way through every puddle!! Thank You Ty!! :))

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  26. Omg Its My Grandbaby Ethan Who Passed on Jan 1st 2013 2yrs old <3 I Wrote You About Him On One If Your Posts :) And I Said Hes With Ty Now <3 Ethan Noah Vargas

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  27. I Wrote to you on your New Years Post About Ethan !! I Promise That Is Ethan With Ty !!! My Heart Flipped Over When You Said Ty Has A Best Friend & Im Crying Happy Tears <3 Thank You God For The Sign That They Are Ok <3

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  28. Oh Cindy, Like you said.. You know you will never forget to look for Ty in the sky. Please don't worry that as time goes on he will seem farther away. The pain can get a little easier sometimes only because we know that we are that much closer reuniting again in Heaven and that our secret connection to loved ones there is such a strong bond that over time they have reassured us that they are just fine and holding on to us through life here on Earth. Thinking about your family always, loving pictures of Ty.

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  29. Cindy.....there will never be a day you ever will forget to look for Ty. It has been 12 years since my daughter Stephanie went to Heaven and not a day goes by that I don't think of her, talk to her, pray to her. She often sends signs to me which I am grateful for, and it just reminds me tnat she watches over our family. Your love for your child and your Childs love for you is eternal!

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  30. Your words are so real, Cindy. I wish with every part of my being that Ty was here with you, growing up healthy and happy with his little brother. I thank God for the signs, hope they are always there until you are together again.

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  31. Cindy - Oh how my heart still breaks for you. Thank you for being so courageous as to update perfect strangers on how you, Lou and Gavin are doing. For me personally, I have grown to think of you guys as friends. Thanks so much for sharing Ty with us all. My Nathan will be 5 in April. We made the mistake of telling him when his birthday is. Everyday he is counting down! I finally had to tell him that it was already February and that his birthday is in 2 months! He doesn't get that February is almost here. If I say it's still January then he thinks his birthday is still 3 months away. At four years old, 3 months is WAAAAY longer than 2 months! :-) Please know that we're all spreading Ty's story and sharing with people we don't even know what an incredible boy Ty is and all the great things he's still doing. I enjoy all of your pictures of Ty but the one in this post where he's reaching for you just did me in. He is always so happy. I don't even know Ty but it makes me feel so much better if you (his Mommy) thinks that he has a friend in heaven that he's hanging out with. Hey, if you say it then it's good enough for the rest of us. I just feel like Ty is everyone's friend. Thanks for sharing your story.

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  32. I love hearing of Ty's ways to visit you. It is such a special bond that you share with him that allows him to do this. So sweet and comforting to think of him with a new best friend.
    I wanted to share my nomination with you, even though I had difficulty expressing the magnitude of why you deserve this- all that you did for Ty and continue to do for Gavin. Poor Gavin- i didn't even get to mention him because i kept running out of space!!

    Cindy Campbell is the MOST "Unstoppable Mom" there ever was. When her beautiful 2 year old son was diagnosed with Brain Cancer in August 2010 her world was so unfairly turned upside down. She spent the next 2 years on a roller coaster of fear, terror, hope, & miracles. She watched as her little love suffered tremendously due to this awful disease and it's painful and limited treatment options. She fought along with Ty, every step of the way. Her sleepness nights were filled with CARING for Ty (administering meds, monitoring for aspiration, cleaning up vomit, consoling a frightened 3-4 yr old)& researching any & all possible treatment options for her baby. She continued to have hope despite each and every setback this couragous and brave little warrior faced. She NEVER STOPPED fighting for her son. Cindy (along with her husband Lou)was DETERMINED that Ty experience all of the things"a normal"toddler would get to experience. Once Ty was paralyzed and required feeding tubes,I am sure it would have been easier to just keep him at home. Instead they were DARING & brought him everywhere possible, so that he wouldn't feel left out or like a "sick kid".They made his world as much " fun" as it could possibly be, filled with super heroes and candy galore! She BRAVELY and BOLDLY faced each day,not knowing what it might bring for Ty but knowing that she would do everything she possibly could to make him smile.I have no doubt that it was her CARING ways that helped get him through the toughest days.She experienced so many miracles throughout the course of his disease and has openly shared them on her blog with thousands of viewers,like myself- that have fallen in love with The Campbell's. Cindy is DETERMINED to spread awareness & increase funding for pediatric cancer so that no family has to endure what they have. She will continue her HEROIC FIGHT despite her own pain.
    BOLD, BRAVE, CARING, DARING, HEROIC,& DETERMINED. Yes, that is Cindy Campbell and you have found your Unstoppable Mom.

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  33. I am holding your family with so much love. Everyday I am amazed and inspired by your grace, by Ty's gift to the world, by Gavin and your love for your husband...that you wake up and show up and find magic and have faith. I've been reading for a long while now and I just want you to know that you are - while not fair that any of what happened is true and I know you would give it all (and more) away to have Ty back - in the midst of the most devastating loss ever, you are a presence of grace and dignity and the type of human I aspire to be. That Ty was a brave boy who came and left a legacy of hope and the desire for me, as a mom, to always do better. Thank you to you and thank you to Ty. I will never forget you or abandon your quest. Holding you dearly, deeply.
    Brooke

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  34. I know you and me for that matter are not that far from Newtown but to end up in Newtown all very "interesting" for lackof better word... i feel like it happened for some reason just don't know what..but I am sorry gavin missed his party. He sounded like a good sport... thinking of you daily. Kerry.

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  35. Hello,

    Thank you for continuing to share " SuperTy's " & all of his ( your ) family's heartbreaking & courageous journey.

    I am thrilled that the Ty Louis Campbell Foundation is up & running. I am looking forward to ordering some " SuperTy " t-shirts & other items online.

    My continued thoughts & prayers are with SuperTy & all of his family.

    God Bless.

    - Rob Swan

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  36. I'm moving to Somers this month and I "liked" the Somers Facebook page and I was super excited to see something on the page about supporting the Ty Louis Campbell Foundation on Super Bowl Sunday!! Go SuperTy!!!

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  37. Cindy what a wonderful post. Something about it just warmed my heart on this cold, cold night. Love is all around.

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