Wednesday, May 28, 2014

Everything is bigger in Texas...

... including their hearts!  Back in December 2010, I received a gift in the mail from a stranger in Texas – a Superman Christmas ornament – and it marked the beginning of a great friendship that I will cherish forever.  Kathleen always knows what to say, she never hesitates to reach out to me, and she sends the all-time funniest cards and the most thoughtful gifts I have ever received.  I truly believe she is one of my many gifts from Ty. I am so grateful for her, and so proud that she is an integral part of the TLC Foundation, heading up our Dallas Chapter (you didn't know we had one, did you?).  Last week while we were setting up for her fundraiser, Ty sent a ladybug to show us he was there and he was proud.


Childhood cancer is not contagious if you support the cause.  Getting involved won’t ruin your day or make you sad all the time.  It will empower you!  It will make you feel like you are driving change!!  Kathleen and her husband Rocky understand this.  They look at their three healthy boys with gratitude, and they aren’t afraid to embrace the cause. This year Kathleen recruited an incredible team of friends to host her second annual “Rock for Research” event at Rockhouse Studios, and it was a huge success.  We are so grateful to all of the wonderful people who came out to eat, drink and dance while celebrating progress, honoring Ty, and supporting all children currently battling cancer (and those who will be diagnosed in the future).   

Everyone was so warm and loving, and so passionate about the cause.  It was an incredible night with incredible people.  The auction was a huge success and the music was terrific.  The “Rock for Research” event breathed some new life into me and Lou after a tough couple of months.  It was an amazing little getaway where we were surrounded by wonderful, loving people and where we knew we were raising money to help our mission.  We danced, we drank, we laughed and we felt surrounded by love. 

The TLC Texas Team - we love you!
These days life is just a balance of ups and downs.  I guess it always has been, but since losing Ty and being so intimately familiar with pain and sadness, I feel the “downs” that much more intensely, and consequently the ups are that much more liberating.

I was so tired today.  It was one of those days where I started thinking about bedtime around 3PM and planned on getting to bed as early as possible.  I made a big dinner and packed lunches for tomorrow even though I didn't want to do any of it.  I folded laundry until almost 11 and even though I’ve wanted to write for days upon days, I certainly didn't have the energy tonight.  Not until I walked down the dark hall, last one still awake in this big quiet house, and upon entering my room I felt for one split second that Ty would be there in the bed.  For one sweet second, I forgot he was gone.

I used to always be the last one to bed when Ty was sick.  Lou would bring him to bed and I would enjoy the quiet time on my computer until the late hours of the night when I just couldn’t keep my eyes open anymore.  I guess it felt so similar walking down the hallway tonight that I forgot he was gone for just one tiny fraction of a second; and when I remembered I climbed into bed and could not stop the tears and the sobbing.  I couldn't control it and didn’t want to wake up Lou, so here I am.  Back downstairs, looking at a blurry screen because I still want so badly for it to be true.  A familiar burn in my eyes, and as much as it hurts I don’t ever want it to go away because that would mean more distance between me and my Ty. 

Spring has been painful in the childhood cancer community.  So, so many children I have grown to know and love on social media have died over the past few weeks.  I guess that’s why I have been so quiet on the blog.  What can I say that I haven’t already said?  We are trying so desperately to drive change for these children, but sometimes it feels like we are beating a dead horse!  It’s painful, it’s horrific – but I know it is not hopeless no matter how long this continues.  I simply have to believe that someday we will find new, safer and more effective ways to cure cancer – especially among its youngest, most innocent victims.  After all:
  • 1 in 2 men   
  • 1 in 3 women  
  • 1 in 300 children  

WILL GET CANCER!  1 in 4 people will die of cancer.  How can we ever give up?

Spring has finally sprung here in New York.  I recently watched Gavin blow dandelion wishes and passionately yell “I wish my bru-ver never died!”   My eyes fill with tears as I silently wish for the same.  Watching the hummingbirds out my window and the butterflies in my garden bring me bittersweet happiness.  Life goes on, and it is beautiful, but I will never stop bleeding over his loss. In the wake of my sadness, this guy makes me smile every day.  He is getting so big and he is a constant reminder of how lucky I am. 


There have been incredible breakthroughs in childhood cancer, and of course I am grateful for the progress that has been made – but it is not enough, not even close.  While researchers have made tremendous strides against pediatric acute lymphoblastic leukemia (ALL), raising survival rates from just 4 percent 50 years ago to 94 percent today (thank God!), the deadliest childhood cancers continue to destroy our children and little to no progress has been made over the same 50 years.  Yet, the incidence of these cancers – Brain tumors, Neuroblastoma and Sarcomas – has increased by 29% and continues to affect more and more children as the clock ticks on.    


The keyboard helped me let out some frustration tonight and my sadness has dissipated.  I guess I needed that.  I am ready to go back upstairs, lie in my bed curled up facing the place where Ty should be, and wait for Gavin to join us as he always does.  There are so many exciting things in the works at the Foundation, I just know Ty would be so proud.  And that brings me peace tonight.  Thank you for your continued love and support.  I still believe in miracles.  I hope you do, too.  

THIS FACE!!!




9 comments:

  1. I am so glad you have this blog to help you get thru the muddle of thoughts and feelings you have Cindy. And I am so greatful for you letting me(us) be part of your healing process. I am glad to be here to read your feelings and know that by putting them here in words for others to see , it is helping you get thru this. You are such a sweet, kind person and my heart still cries for you and Lou and Gavin when I see how hard this is for you all but I thank you for letting me feel like I am helping you in some small way just by reading it. Keep moving on and doing what you do knowing Ty is always with you and so very proud of you all. Love to you and yours, Jean

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  2. So glad to hear your voice...I had checked in on you a few times and you weren't there...
    I'm so glad you found some support in Texas...and wherever it comes. Thinking of you all - always.

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  3. Cindy,
    Your strength and your resolve continue to amaze us all. With people like you working as hard as you do, we stand a good chance of finding better ways to treat these kids. Most of us are so powerless to do what you. Don't forget to stop and Smell the Roses along the way. It helps the heal and you deserve a snoot full.

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  4. Thinking of you Cindy. It rained yesterday here in Memphis & my five year old jumped in a puddle of water & screamed with joy "muddy puddles, muddy puddles, I like to jump in muddy puddles! ". I had never heard him say this before & instantly my thoughts were filled with Ty. His journey, the joy and the pain that was experienced during his time here. His beautiful face. So I allowed my boys to jump and play in muddy puddles in honor of him. His spirit lives on Cindy. He has affected so many people in so many ways.
    You are always in my heart,
    Assata

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  5. I was worried for a little not getting new blog for a while. I know you are busy and that's good. Time and time again I have no words that can cheer you up. I wish there would be something anything, but I also feel so frustrating reading about babies dying and still there is nothing. No cure, no progress nothing. I did hear that leukemia survival rate has been so high but nothing about brain tumors. Silence there. Where the hell is everyone? Where is the research. Makes me feel hopeless sometimes but when you say that you believe, I believe also. Your drive, your love and your passion for others is simply unbelievable. I so miss your boy. I really wish he would be there in bed waiting for you.

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  6. Some times can be just so unbelievably hard!

    I wanted just to say something concerning ALL. What we ran across 20 some years ago they said that ALL then had a 50% cure rate. What we found though in seeing kids and getting to know all the kids that were in the hospital same time as we were not a one survived ALL, not a one! So ever since then I have been leary of statistics. Not sure if they are correct.

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  7. God Bless you and your family each and everyday.....

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  8. I think about Ty every time I place an order through Amazon since I use smile, the name of the foundation pops up. Yesterday, I ordered some super hero legos for my boy, so Ty was REALLY on my brain even more than usual. His sweet face has left a lasting impression on my soul, I guess. Anyway, guess what I saw right after clicking "place order".... a lady bug on the windowsill! He is EVERYWHERE.

    Love you, Cindy.

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  9. Cindy, Thank you for doing what you do! u wouldnt even know how to get started. You live a life giving to others. Truly amazing! I am in an awe of you what you are doing in honor of your son Ty.

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