Friday, May 24, 2013

We lose. Not them.


“I wanna be remembered as a kid that went down fighting.  That didn’t really lose.” – Zach Sobiech.

If there is one thing I am certain of, any child who dies of cancer is remembered as a fighter.  They don’t lose.  Cancer loses.  And we lose - the ones that are left behind.  The cancer dies with their bodies but these beautiful, innocent, most holy of all souls live on in our hearts for an eternity.  Their stories of strength, triumph and tragedy inspire others to live theirs to the fullest.  To hug their children tighter and to cherish more the gifts they are given. 


I just pray more people can see the love and beauty that surrounds these kids during their fight instead of turning a blind eye to the immeasurable sadness because it’s too hard to imagine.  Life is sad.  Life is so sad and so hard for so many people.  Bad sh*t happens, sometimes really bad sh*t, and none of us are immune. 

It is just so important that we raise awareness and more people start acting on behalf of the cause.  On so many levels!  Everything from the way research and medical institutions are funded (most important!), to the ability for cancer victims to easily gain access to clinical trials and treatment alternatives.  We don’t know what causes most childhood cancer, it’s totally different than adult cancers, but we need to consider environmental toxins and be more cognizant of the chemicals we use, the air we breathe and the food we eat!  I am not saying this because I think I could have changed Ty’s fate if I used orange peels to clean my countertops instead of bleach, but as a whole I get so upset when I think about how we have manipulated nature on so many levels.  Nature has fought back and it’s called cancer!  Disgusting, vile, putrid cancer.

I am on this soapbox only because I wasn’t a doer until my life came to a screeching halt.  As someone who was happily floating along in life with my two beautiful children and my daily stress consisted of deadlines at work instead of chemotherapy and radiation, I look back and wish I had done more before I landed here.  I remember thinking how rewarding it must be to work for a nonprofit, too bad they don’t pay enough and I have no time to volunteer. 

Since Ty got sick I have been flooded by kind, benevolent, giving, selfless people that impress me still every single day.  There are so many good people in this world and I am happy to call so many of you my friends.  This is one of the many good things that came out of Ty’s illness.  It goes without saying, obviously I would give back all the goodness I have discovered to have deadlines at work and two healthy children.  I guess my point is that you are all those people.  You care enough to continue reading this blog.  You shop at Sevenly, you wear TOMS and a wrist full of silicone bracelets, you never pass up an opportunity to make a donation at the register and if you can’t afford to make monetary donations, you take the time to raise awareness.  You take the time to care and to share Ty’s story among so many others.  You are compassionate, loving, empathetic and I PROMISE YOU, you are making a difference.  Thank you.      

Gavin has been such a good boy.  He continues to talk about Ty a lot.  Yesterday morning he had this adorable conversation with Lou:

“Daddy?  When Ty wasn’t in heaven, was he in the Purple Room?”
Gavin goes to the same pre-school that I used to take Ty to.  He is in the “purple” room.
“No, I think Ty was in the blue room, but I’m not sure?  We’ll have to ask.”

Yes, Ty was in the blue room, aptly so.  I just thought it was so cute how he described it as, when Ty wasn’t in heaven.  He is really figuring it out, coming to terms with what happened to his brother, and coping well.  Better than me and Lou, that’s for sure.  On Friday I received a very kind text message from his physical therapist who used to treat Ty.  She wanted to let me know that he was talking quite about about Ty, asking her if she remembered coming to the house, and what Ty’s favorite toys were.  Stuff like that.  I couldn’t even get it together enough to text her back.  Sometimes it’s just so incredibly hard to bear. 

Gavin is such a happy, fun little boy, but it rips my heart into tiny little pieces to see him playing by himself all the time.  Of course we play with Gavin every chance we get, but he went from having Ty and Mely in addition to Lou and I, and now he has to pull at our clothes when we are trying to get things done around the house and ask us to please play with him.  This morning he was up early and for the first time EVER he let us sleep and went off to play on his own.  I heard him tinkering around in Ty’s room and I was so happy to see the mess he made!  Finally, someone was playing with all of Ty’s awesome toys!  Ty’s room is filled with so many incredible super heroes, cars, robots, etc.  I used to hesitate whenever Gavin wanted to play with them because he was so young and I feared he would destroy them.  This morning I realized that now I embrace it.  I want him to enjoy a piece of his brother like that, and he has grown enough to understand.  He appreciates the toys and he is careful because he doesn’t want anything to happen to them, either.    

Yesterday he was riding in the backseat and reminded me that “I used to sit there, Ty used to sit here, and Mely used to sit there!”  He said this with a smile as my face contorted in the rearview mirror.  What a sweet, smart, loving little boy he is growing up to be.  Lou and I say “I love him so much,” about a million times a day.  He is our lifeline and we are so blessed. 

21 comments:

  1. My heart aches so badly for you all but I keep the newsfeed of your Facebook page on mine because I never want to forget Ty or the lessons he has taught me. To be a better mother and a better person. I went to the store yesterday and my young son walked up to a rain puddle and I was about to say no don't do that and immediately Tys little face came to my mind and so I told my son to JUMP! Thank you Ty. <3 xoxoxo Vanessa Austin- Sydney, Australia

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    1. Ness i was just reading this comment and it pricked a tear in my eye and i thought 'how true'! and then i saw your name at the bottom of it xxxxx your right, sometimes we need to just 'let go' and let the moment be for what it is 'because we can'...Claire xxxx

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  2. Fight the good fight momma....lots of love to you and yours from the mother of one fighter to another....

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  3. I love the pictures of both of you with Ty <3 and I enjoy hearing Gavin talk about his brother. You continue to do so many wonderful things to bring awareness...I was just thinking how great would it be seeing Gavin group up to be someone bringing awareness and sharing Ty's story. There are so many possibilities. I can't wait to see Gavin grow up and be a great spokesperson. Youare always in my thoughts and prayers. God Bless you....Always thinking of you Ty : )

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  4. I heard of Ty's struggles third hand for years thru my mom and my Aunt Maryann but it was too abstract since his passing ive read all ur blogs and watched all the video feeds. You and Lou are incredible brave human beings and Ty was lucky to have u two as his parents on his short but poignant time here on earth. Continued blessings to ur family now and always.

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  5. Painful beautiful truth.

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  6. Bless you Cindy. Ty's story has changed my life and on the hardest days, I am here too, beside you, wishing with all my being I could change all of this. There is nothing I can offer that could ever be enough, but I'll never stop fighting for Ty and every other child diagnosed every day.

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  7. Connor was just jumping in muddy puddles everywhere yesterday. Muddy wet shoes and all! Normally I would have freaked, took his shoes off b4 getting him in the car. Its just a car. Its just dirty shoes. instead I laughed with him watched his beautiful big boy 6 year old smile and thought of Ty, and all of you...so hard, so sad.
    Keep fighting the fight Cindy!! We got ur back!!
    <3 <3
    Sue

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  8. He is a good boy and so adorable!!!! Kelly

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  9. I have finally just realized how to make a comment after all this time. Finally!!!! Kelly

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  10. Ty lives on in super heroes every where. I think of you all so often. I am so glad Gavin is adjusting and is such a great boy for you.

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  11. Cindy - You are amazing.I have learned so much from you and your beautiful Ty. He will always continue to be an inspiration and never be forgotten. My 17 year old daughter and I watched Zach Sobiech's documentary last night together and could not hold back the tears. She had already seen it at school which I am grateful for. I agree with you, we can't try to hide from it because it's sad. It could happen to anyone and awareness and compassion are so important. I'm so grateful to you for sharing what I know is so extremely painful for you in such a gracious way.
    Thank you and I'm wishing you peace and happiness. Thank you for sharing Ty.

    Ann from Buffalo

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  12. Those are the most beautiful pictures I think I've ever seen. I too think of Ty all the time and think so often how much I'd give for Ty to be here and with you again. I am also standing with you to always remember Ty and his beautiful legacy. His is, after all, my super hero.

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  13. Cindy, Beautiful photos.. thank you so much for sharing. They are beyond beautiful. I am reading a very inspirational book now. Its called, " Ill see you again" you may have heard of the book or the family, she says the same things you say. I don't know if this book would make you feel more connected or not. Take care.. thinking of Ty

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  14. The picture of Ty and Lou just broke my heart, all over again, for you all. God bless you for shedding light on pediatric cancer! May your days be filled with sunshine and ladybugs,
    Jennifer, Illinois

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  15. Hey Cindy- is there a way to get rid of these morons posting? Anyway- I think about your family constantly..

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  16. Cindy and Lou, To the best parents ever. Love you guys. Love Emily :)

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  17. I see the beauty in all these children and their parents. You are all heroes and fighters. You are all strong beyond belief and have endured more than most. Through it all you continue to have immense faith and hope. Thinking of you today and always....

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  18. Add me to the list who let the kids jump in puddles this week. Thanks to Ty!
    -Wappingers falls, NU

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  19. Today and every day I think about Ty and your family. But I think sometimes it really hits me that he is gone. You know I catch myself in a fun moment when my two boys play together and I think how unfair it is that you can't have Ty playing with Gavin as I have my boys. How it is the hardest thing to go on with your life knowing that your baby isn't there. To just think of him and constantly worry is he okay? Does he miss you? Does he need you? We dont do enough I couldn't agree with you more. All the chemicals we use all the bad foods we eat and the way we turn away from painful stories because we don't want any sadness in our life's. But I will continue to share your boy with anyone willing to listen because it's the least I can do for him. And I will continue to cherish every moment with my boys because Ty taught me millions of things I never knew. I miss you baby boy and I always think of you. As for Gavin, all I want to do is give him the biggest squeeze and love him forever. G-D could not have given you th best boy in the whole wide world. He is the biggest blessing and the best cure for you broken heart. The pictures made me cry because I miss seeing your boy. Please never stop sharing his pictures and stories.

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  20. Such beautiful pictures of you both with Ty - he is forever in my heart and you all are forever in my prayers. Gavin is so sweet and I love to see your little boy growing so big and the fun personality he has and how he remembers Ty. I know how bittersweet this all is. Wishing you all love.

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