Tuesday, April 1, 2014

Gavin doesn't get it and that's okay


Gavin doesn’t understand

Gavin tries so hard to understand, but his little mind just can’t comprehend the idea of heaven or spirits and I don’t know how to help him with it.  It’s okay, he isn’t hurting or suffering over the confusion at all, but I wish there was a way to teach him what is so grossly intangible.  He believes that Ty went on a rocket-ship up to heaven and that it is located in outer space.  We never told him any such thing, but ever since he saw the hyperbaric oxygen chamber that one time (we called it “the rocket ship” in an attempt to make it exciting for Ty) that is just what he came up with.  I think it’s because we always say “Hi Ty” whenever we spot the brightest star in the sky, too. Truth is, he also believes there are other places in the universe where Super Heroes are real and where they live.  He’s four/almost five and this is just how his mind works.  Our conversation at the kitchen table today:

“Why did Ty have to go to heaven?”
“Because his body was too sick for him to continue living in his body, so his spirit had to leave and go to heaven.”
“I KNOW THAT!” he said shaking his hand and looking annoyed with me (because Gavin knows everything, by the way), “but why can’t he come back?”
“His spirit is free and he can’t come back because he can’t live in his body anymore like we can.” (I was winging it, this was an unexpected conversation.
“Why did he get sick?”
“I don’t know.” By this time, my insides begin unfolding but outside I keep it together.  There is a tidal wave of tears building inside me while on the outside I try to gently tip my head to the side, smile softly and think of what else I can say to explain this to a four/almost five year old.
“Look at this chair I made!” Gavin shows me in excitement!  He bit into his slice of apple and it looked like a chair.  Then he ran off to see if his Lego guy could sit in it.

The wave inside me began to subside.  The difficult conversation was over.  I wanted it to be over because it was sad and unpredictable and I was afraid it would end with me crying and upsetting Gavin.  And I didn’t want it to be over because I want Gavin to always be interested in talking about Ty.  I hope he always asks questions.  I hope everyone does.

Ty was different when it came to understanding heaven and spirituality.  I truly believe that was his gift.  I feel he saw angels for a long time before he passed away.  I like to believe they comforted him and helped him feel more comfortable about dying.  When I had this conversation with him last September, he just looked into my eyes intently, nodded his head, and whispered a slight “yeah” as I spoke.

"I know that Daddy has told you that you are getting better now.  That you are going to walk, and run, and jump in muddy puddles.  Do you know what else you're gonna be able to do?  Fly.  Do you know what heaven is, Ty?  Heaven is where God lives, and you know how much he loves you.  In fact, heaven is filled with people who love you more than you can imagine because heaven is made of love.  There are so many children just like you there.  And they want to play with you.   A lot of them even had cancer like you, and they just want to hold your hand and have fun all day long!  Heaven is filled with rainbows, and at the end of every rainbow is a giant pot filled with candy and chocolate coins.  And you know what else?  There are muddy puddles everywhere.  You can take the hand of your new friends, run super duper fast, jump as high as the sky and then SPLASH!!"

It still seems surreal that I had this conversation with my son just days before his fifth birthday.  That I knew he was going to die, and I think he did, too.  It still doesn’t seem real.

For those who missed the segment on Katie Couric yesterday, you can watch it via the link below. It was an incredible segment and Katie is a special person.  So grateful.  


  1. My heart breaks knowing the world has lost such a precious child. I cannot imagine your pain but please know Ty, you, Gavin & Lou are in my and many others prayers.

    1. Hey buddy! Missing you tonight. Love ya!

    2. Hey buddy! Missing you tonight. Love ya!

  2. So much beauty in such loss.

    I'm curious about your thoughts on Ty's experience with the hyperbaric chamber?

  3. You were beautiful, poised and full of grace on yesterday's show. You were perfect. It is people like you, that are going to truly change the world of pediatric cancer. Thank you for continuing to share your beautiful Ty with all of us. And thank you for your continued efforts in his honor.

  4. Just watched the segment. Cindy, you looked so beautiful. You did so well. I couldn't be more proud of you. You were meant to do this. You were meant to make great changes in this god forsaken sad world. Changes for all these children that need just that. Even though Ty is not here for you to physically take care of, you continue caring for Ty by doing exactly what you are doing. Fighting for him through others.


    Kim, Gavin and Gage

  5. Teal. I'll try to private message you on Kai's FB page to talk hyperbaric oxygen. So much to consider on that and I'm happy to share.

  6. I think Gavin understands that Ty is no longer in pain in his own kiddie way. I am happy that he thinks about it as a fun rocket flying high. I couldn't bear to know that Gavin is sad and crying, its so good that he was so young when this happened. He has a full life to learn and adapt and he will always remember Ty. Its impossible not too. We never meant Ty and talk about him, so I am sure Gavin will always do that. I so agree with you that Ty was so different spiritually, you could just see it in his eyes, they were just so full of love and soul, I can't describe the feeling of simply looking into them. They were so alive and even at his sickest moments they were just so focused and so deep. The picture of you laying next to him is very hard to look at even today. It makes me relive your hardest moments and I am sure at the same time your favorite moments because he was physically still there next to you. I don't know how you do that, but you are the most amazing mom in the world.
    Missing you baby boy.

  7. What a lovely appearance on Katie -- and a great chance to spread the message and increase awareness of the foundation. Keep on truckin' !

  8. My dad told me once that when you die that your energy doesn't go away but it stays in the universe and just turns into a different form. I lost him to cancer in December and I look up at the stars now and I can feel him looking down on me. I think of Ty too, even though I never met him and thoughts of your family quickly run through my mind when I look at the sky because I know you are looking up at the sky watching for Ty too.

  9. Miss your Ty. Cindy, Lou & Gavin - we think of you all the time.

    Much love & hugs,

  10. I taped Katie and can't wait to watch!! Ty would be/is so proud of you!!

    I haven't posted much lately, but just know we all still read and await your next post.

    This post got me....especially the convo you had w/ Ty about heaven. So sweet yet so sad all at once. I can't imagine having that conversation w/ my little one.

    You are so strong!! I admire you!


  11. Not a day goes by that I don't think about your precious Ty! ♡

  12. :) I think you handled Gavin's questions well. He's only a child, and sometimes, the less said, the better. He'll grow and understand more about what his brother went thru...but until then, he' going to be a kid and think 'kid' way. My prayers are always with you and your family.
    Betty from Beacon, NY

  13. You are a special lady. You answered Gavin perfectly. I admire your courage. The conversation you spoke about with Ty just prior to his passing was pure love. In my thoughts always.

  14. Yes Cindy, as you put it.. its okay :) Gavin is such a sweet child and as you mentioned its normal he brings up questions about Ty. I love it that he does. He willl always think about and love his brother :) Gavin is just too cute!! On a side note, word on the street is you were on Katie Couric! Do you mind sharing details? Love, Emily

  15. Oops! You mentioned the show at the very end of ur post. Cant wait to see!!

  16. I watched the video. You are beautiful inside and out, Cindy!
    Love Gavin's happy hair - he and Ty share that same awesome do....:)

    1. When I see the brightest star in the sky at night, I always say a prayer for Ty. SUPERTY FOREVER!

  17. I finally watched the video. I saw your post and knew the video was out there but just couldn't do it till now. I knew that watching it would bring tears upon tears. Watching you and seeing Ty...well, it breaks a heart all over again. You are just so strong and we are all so thankful for people like you.

  18. Great job Cindy. Thank you for advocating for all parents. Thank you for all of your hard work in raising money and funding research. You did a fantastic job on the Katie show. We are so incredibly proud of you. Thank you for all that you do!

    Team Jack

    Andy & Bri Hoffman

  19. I was actually leaving to go to work & all of a sudden say Ty's face & said to whomever was near me "that's Ty!" And then we watched it, cried, but smiled. I can't imagine your days, but the strength you have to keep fulfilling his wish is incredible. And, as sad as it is, childhood cancer needs to be a focus, like breast cancer is. And I think what a bunch of you momma's are accomplishing I know that you all will change the future of an awful disease. Thank you

  20. Hi Cindy
    I read your blog always & work at the hospital that treated TY. I feel as though i know you.....
    I just wanted to say thank you from one mom to another. Thank you for fighting this battle. I hope that my sons will grow up in a world where pediatric cancer does NOT exist.

  21. You are such a strong mother and someone I look up to. I have a 2 1/2 year old daughter and I am 30 weeks pregnant. The doctors say that this pregnancy will not have a good outcome because I hardly have any amniotic fluid. If the baby is born alive it might have a lot of problems and as much as I want to be strong and save the baby, I don't want the baby to suffer or be in pain because I don't want to let go. Any words of encouragement.