SuperTy will do amazing things

I said in the last post that Ty's story is far from over.  I will continue to write about him indefinitely, and I hope you will all continue to share his story and invite others to follow his journey, even now.  Ty's courageous battle and unbreakable smile has made a powerful impact on so many people around the world, and I truly believe that this is only the beginning.  I will never get tired of hearing people tell me how much my little boy means to them.  How much his story has given them perspective. 

There have been so many beautiful, wonderful comments over the past week.  They bring me to tears in a very good way.  I have so much catching up to do, but I promise I do read them and I thank you all for sharing.  

I used to spend the nights lying in bed next to Ty, listening to his breathing with a mind so consumed with worry that I would eventually have to get out of bed and start typing.  Maintaining this blog has always been therapeutic for me.  I thought after he died that I would just fall into a deep depression and sleep for days on end.  I am finding that instead I lay in bed missing his warmth so much, that I barely sleep at all.  I can't tell you what it is like to go to bed at night.  The quiet has always been the worst for me.  It's when my mind is the most frantic. 

Tonight I can't stop reliving everything about the day Ty died.  How his body changed over the 18 hours that he stayed with us afterward. What it was like to spend the night with him in our bed one last time.  How cold he was when I kissed his cheeks and his lips the next morning.  The visions are so vivid and I hope I remember them always. Ty was in the bedroom with us the entire time.  I watched him die so peacefully in my arms, but I promise you I never felt him leave.  He was watching us as we bathed and dressed him.  I do believe he heard me when I read him some of his favorite books in the middle of the night.  When the coroner came with his casket the next morning, Daddy made Ty "all comfy in his bed" which is what he would have wanted because he always said daddy does it best.  We didn't put shoes on him, instead we sprinkled salt water over his toes and covered his feet in sand from Long Beach so he could always feel the sand between his toes.  That was his favorite place to be before he got so sick.  We placed pictures of his favorite people all around him and we made sure he brought some of his most favorite things with him, including candy, captain america, Max & Ruby DVDs, his seashell and a toy catalog.  Lou and I also wrote him a letter each and placed them with Ty so he could carry our words with him. 

I recently read a book, Snow Flower and the Secret Fan, where the women in 19th century China would traditionally burn one's lifetime collection of letters that were exchanged among their closest of friends, essentially letters that tell the story of their life, during a funeral.  The belief is so that the deceased can share his or her story in the afterworld.  Ty, of course, didn't write anything in his five short years, so Lou and I decided to each write him a letter instead and we included those letters to be cremated with Ty.  I hope he carries my words with him in his heart.

A LETTER TO MY SON:

Ty,

To say that I love you is inadequate.  I am enamored with you.  I had no idea how incomplete my life was without you in it, until I saw you for the first time.  Even during your sickest days, every minute with you filled me with love and purpose. 

You made me see sheer beauty in all that is silly and ridiculous.  That will never go away.

I think I love you more than I love God Himself.  I loved God all my life, but never felt love like the way I love you until I held you in my arms.  I love my parents, I love your daddy, I love my sister and brother.  But the way I love you and Gavin, a mother’s love, is something that can’t be put into words. 

I can’t believe it’s been two years since we have started on this journey.  Two years that felt like a lifetime.  Two years that felt like the blink of an eye, too.  I can’t think straight, I suffer headaches, my back hurts and I cry all the time.  But that is nothing compared to what you have endured every single day.  And you are only five years old.  It’s so unfair, and so cruel.  I hope someday it won’t be like this for other children.  I pray for a cure and I believe your story will help us come closer to making that a reality.  You are amazing in every way. 

Cancer took away your ability to run and jump, then to walk, then to sit, then to eat.  But it never, ever took away your ability to be a kid.  To laugh and be happy and have fun.  You had a love for life that no one can understand unless they knew you.  It hurts me to think that someone so pure, sweet and innocent as you can have all the joys of life taken from him, when there are so many others who don’t appreciate their own lives, their families, the healthy bodies they live in.  But then I realize that maybe you found so much joy in your five years with us, despite your suffering, because you always knew your life would be short. 

We have been praying for a miracle all of this time.  Now, as I write you this letter watching over your still body, I realize that you alone were already a miracle. 

I can’t kiss you enough.  I can’t hear your laugh enough.  I am going to miss you beyond comprehension.  Thank you so much for letting me be your Mommy.  I am the luckiest person in the world because you were mine.  I love you super, duper, big, HUGE much. 

My broken heart will never stop bleeding for you,

Mommy

 
Lou and I were able to help bring the casket out to the car, ride with Ty all the way to the cemetery, roll his casket into the machine and Lou was given permission to turn the switch.  It took so much restraint not to try and climb in there with him.  Lou and I both would have been more than happy to go with Ty.  Instead we waited and watched as the various lights had to warm up and turn on. I imagined Ty's casket starting to burn, then flames invading his body that was laying in there in his perfect white suit. As horrific as those thoughts were, I also felt deep inside of me that this was the last step in Ty becoming truly free from his body.  I found comfort imagining his cancerous tumors dying in the flames. 

We took his ashes home and he is  back in our bedroom with us, but I don't think there is a connection between his spirit and his remains.  I will have jewelry made so I can always carry some of him with me close to my heart, but I believe that it is more for me... not for him.  He is soaring so high!  He is in and out of this house.  I talk to him all day long and I feel like sometimes he hears me and sometimes he doesn't.  I don't know.  This is all so new to me I'm not quite sure what I'm feeling other than the easily recognizable emotions like sad, lonely and stressed.  I miss him so much.  I pray that he comes to me in my dreams and one of my biggest fears is that he won't!  I need to see him.  I need him to come to me in my dreams.  I guess I have to learn to sleep again, first, before getting all worked up over this!  :)

I have to cut this short because it is so late, but I have so much to share from the events over the past couple of days.  Hopefully I will be able to get a holf of some pictures to post, too.  There are still amazing things taking place in honor of Ty and we feel so blessed! Thank you to all those involved. 

Ty and Gavin July 2010 (one month before diagnosis)