Wednesday, September 25, 2013

Ty was born on a beautiful fall day - just like today

He died on a beautiful fall afternoon, too.  I checked the weather this morning, and it looks like another seven straight days of perfection ahead. This weather has always been my absolute favorite, but of course now it leaves me ambushed with the sad, gut-wrenching memories of one year ago.  Thankfully, some of those memories of Ty's last days are incredibly beautiful and they keep me putting one foot in front of the other.  Whenever I recall Ty's unbreakable "smile of the day," I continue to be awestruck and inspired.  This was just 10 days before he passed away. 

Fall in New York is so incredibly perfect.  The trees are enchanting, the crisp breeze fills my lungs with purity and the sun continues to warm my face.  Days like this prove to me that God is all around.  Ty, too.  Every falling leaf is a poetic reminder of our love and loss. 

As much as I find myself smiling at my most favorite memories of Ty, I also find myself haunted by the memory of the day Ty died.  My mind often goes there, to the moment I scooped him up into my arms and cradled him until he took his last breath.  Of course, I can't recall that moment without crying and I feel such guilt when I try to clear it from my mind because I don't want to spiral into sadness.  It feels wrong when I try to push it away. 

I recently listened to an NPR interview with Dr. Jim Olsen of Seattle Children's Hospital.  Dr. Olsen recalls a couple who lost their daughter to a brain tumor, and they thanked him as they told him that "her death, to us, what as beautiful as her birth."  I am so grateful to hear those words spoken by another couple who walked in our shoes, because it reminds me that it is okay to also see the beauty among the pain.  It helps me to think of Ty in a beautiful place, and as Lou says, he brought the missing pieces of our hearts with him. 

I have said this a thousand times... I envy anyone who is pregnant with their first baby because there is a wave of true love that will take place the second that baby is born that is simply indescribable.  Of course, that love is just as profound the second time around (and so on, I'm sure) but there is only one moment when you can feel the intensity and truly understand what motherhood feels like for the first time. 

Just as powerful as that love was the second Ty was born, the pain was equally powerful the second he died.  Just as full as my heart became - so much so that I describe it as a love explosion - my heart feels equally deflated upon losing him.  Despite this, I recall his last breath and I am grateful that his passing was so incredibly peaceful.  I agree with the other couple - I believe his death was as beautiful as his birth.  His face was so angelic, so soft and so pure - I couldn't believe such a perfect child was mine.  Just as I couldn't believe it when I first saw his face.  He will forever be my greatest gift.

This morning Gavin was watching an episode of "Olivia" on Nick Jr. while eating his breakfast.  In the cartoon the teacher was telling her class that they each had to pick a vegetable to study for the school play.  One of the kids asked "is pudding a vegetable?"  Gavin didn't react, but in my mind I heard Ty's incredible little giggle.  He would have totally laughed at that.  He was always so quick to laugh, so easy to amuse, and so lighthearted.  He always "got the joke" even at such an early age - unless it was a knock-knock joke, in which case he butchered the joke but still laughed in hysterics after delivering the wrong punchline.  I miss that laugh so very much. 

I often find comfort knowing that Ty's story - and the stories of children like him - have brought out such good in people.  A couple of weeks ago a woman paid for some toys and pajamas I was buying for Gavin.  I was so shocked I didn't properly make an effort to stop her - and I don't feel I thanked her appropriately afterward.  She really caught me off guard when she told me how much Ty's story affected her and she wanted to do this for me.  I've been thinking about what to do about that, and today I paid it forward by purchasing gift cards in excess of what she spent on Gavin.  I made a few care packages and will be sending them off to families in need.  It made me feel so good to do it, and I feel reinvigorated in my efforts to keep fighting for these kids.  Isn't it awesome?  How kindness is contagious? 

The TYathlon this weekend was a tremendous success.  It was nothing short of amazing!  We had over 100 triathletes and another 200 additional runners in the 5K.  There were children who blew me away with their speed and stamina (including my nephew's James and Ryan, and my neighbor Andrew).  There was also my Mom - who completed the 5K alongside my other nieces and nephews.  I'm so proud!  But most of all, I'm proud of Lou.  He made great time in the tri and he gave a beautiful speech.  What an incredible tribute this was.  Our tremendous thanks to all that participated, and most of all to all those who helped plan such a flawless event.  It was a lot of work, everyone busted their butts, and in the end it showed.  It was an incredible day that will grow year over year.  Lou and I are still blown away by the incredible generosity toward our fundraising efforts.  We made more than $53,000 on Crowdrise alone, not to mention our generous sponsors and the proceeds we are awarded from the race registrations.  We are making a difference every day!  Thank you. 

Lou and I were proud to present a grant to Dr. Jeffrey Greenfield that will specifically fund a researcher focusing on pediatric brain and spinal cord tumors under the Weill Cornell Children's Brain Tumor Project.  This is our first of several grants that will be awarded between now and the end of the year.  We worked so hard over the last nine months to fundraise, and now we are eager to get that money in the hands of the researchers.  I can't wait to keep you all updated on those investments, and the progress those researchers will make in years to come. 


  1. Cindy and Lou, thank you both so much for your tireless effort to make much needed improvement for new treatments and funding for pediatric cancer research. You are making a difference in children's lives all in the name of Ty. We will never forget your sweet and beautiful baby boy. SuperTy forever and always ♥

  2. Cindy and Lou, thank you both so much for your tireless effort to make much needed improvement for new treatments and funding for pediatric cancer research. You are making a difference in children's lives all in the name of Ty. We will never forget your sweet and beautiful baby boy. SuperTy forever and always ♥

  3. Truly AMAZING!! You continue to inspire me and Ty's story is one I will continue to tell! Just looking at his "unbreakable" smile warms my heart! You are doing such good things in Ty's name and he will forever be a part of you!

  4. Your perfect Ty has changed my life. I fight this monster for my own son and I fight because of your son. Thank you for continuing to inspire us all.

  5. Congratulations on a wonderful day and the fruits of your labor. Thank you for your hard work. I've never said much to my son about Ty, but the other morning he told me he saw a mom and baby ladybug together outside. I of course thought of you and Ty.

  6. I think often of your posting of the day Ty died...your words touched me and made me feel so peaceful and also so sad. The perfect yin-yang. So often as life throws me craziness I am brought back to think of Ty...his smile and now his legacy. These are kids that will not ever be forgotten. Thanks for taking the sadness and turning into change in awareness and hopefully science that will change the futures of many other children. Nothing and no words can make you feel better about this stinks...but please know so many people are reading and remembering and trying to follow your lead in making changes to this awful disease.

  7. Thank you for giving us hope, Cindy!

  8. Such a beautiful but heart-wrenching post.

    I have one son and totally get what you mean about the love of a first born. It is truly and utterly amazing. He is now about to be 4 and I still look at him and think what perfection. It is a love like no other!

    Thank you for all you do. You are amazing!


  9. The Fall season will always remind me of Ty and his passing. I remember the day so vividly - it was a beautiful day outside. Everytime I see a ladybug or hear "Ruby and Max" come on the TV, it reminds me of your sweet boy.

    My first-born son graduates high school this year, and I too, get what you mean about that love for your first child. It is something special and creates a bond that nothing will break, in life and in death.

    My hope is that a cure for pediatric cancer becomes a reality in our lifetime. IT HAS TO!

  10. Cindy, This was the most beautiful day ever. Perhaps reading your post this morning and thinking of Ty made it that more beautiful. I took a long walk tonight and relished in the beauty everywhere. I am so sorry for your pain and love that you let all of us enjoy him again through pictures and your words. Please know that we are keeping you close to our hearts. Love, Emily

  11. That is a very heartwarming story about the lady buying Gavin's things. Ty continues to inspire people, which that stranger's generosity proves 100%. It's a terrible tragedy that monster tumor took his life, but it couldn't take his goodness, his strength, and his spirit.

  12. Cindy you are amazing as you are making history in your efforts to move research in a defined direction. Your strong words have been backed by your strong actions. You are one of the most beautiful people I know and surrounded by so many other beautiful souls. I watch Debi work so hard to fight this disease. I have always been proud to cal her a friend and now it is that much more. For whatever fate had in store for you - I know that Ty was the luckiest boy to have you and you needed the family you got. And now the world needs you.

  13. TY is doing amazing things...never stop writing Cindy... You have been an inspiration to my life since finding Ty and your blog ......kindness is contagious!

  14. I can never put in words all the things I want to say to you or how I love Ty, how he changed my life and touched my heart so deeply that I think of him every single day. The picture above of Ty brings me back to last year right before he died. Every day I would click on your link to check to see Ty's smile of the day and how he was doing. This crisper weather brings me back to the last weeks of his life and fill me with sadness, I can't imagine the flashbacks that you guys are experiencing on a daily basis. I just want to hug you so tight, mother to mother. I will never say I know how you feel, Ty wasn't even mine (and I have 3 small children) but his death tore me apart. NOT A DAY passes that I do not think of him, I check Ty's FB page and Gold Ribbons daily and enjoy every single one of your blogs. It may sound funny but I always look for Ty in the sky, I know he's made some appearances before (his name, the eagle over your house etc.)! Thank you for continuing to share Ty with us, and an equally as big thank you for the strides you are making towards a cure. You will change the lives of all the future Ty's and Tyettes out there ;)

    God bless you all! Love you guys so much. Missing sweet, beautiful Ty every day.

  15. Oh baby boy how I remember that picture and how envious I was of you that even laying down being paralyzed having difficulties breathing you smiled while others just can't enjoy simple beautiful things life grants you. You are the boy that this life choose me to follow after, you are the path I chose because nothing matters except love and health. And you had to take a hard one for all of us to learn from, I'm sorry it had to be you and your beautiful family. I think of you just as often as I think of my boys. You are just so special and beautiful. I can't imagine your death your last breath, I can't imagine the pain your family suffers every day. It's is beyond description. Although your mom seems to find the most beautiful words that describe you and all your moments. Your smile is forever contagious. I can't believe a year has passed..... I miss you baby boy.

  16. I've been reading your blog for over two years now. You are my inspiration, please do not stop writing.

    Father of four, Finland

  17. Perfection. He was.
    How beautiful about the woman paying for your shopping tab....and then your paying it forward. Ty will always live through great moments like that.
    Wishing you peace ~

  18. Truly awesome and beautifully amazing. Way to go!