Please don't die

Tonight I did something I've been trying so hard not to do.  Ty had fallen asleep for the night and I noticed that his eyes were still partially open.  My heart sank.  I immediately recalled some of the information I read in the hospice handbook under the category "weeks to days" (signs when an individual has weeks to days left on this earth).  During my morning coffee I read the following and thought about how Ty looks when he is under deep anesthesia:

• the individual may lose the ability to shut his or her eyes completely. 

In a panic of emotion I leaned in and whispered to Ty, "Don't die. Please."  I know he isn't going to die tonight, we will have tomorrow, but I feel weak for doing that.  Like I was trying to take back all of this tough talk about letting go.  Like a little kid crying, "I changed my mind!"  I didn't want to do that.  I wanted to be strong and to tell Ty how it's okay.  But you all know that the truth is it's not okay, what happened to him.  It will never be okay.  How can children like Ty be tortured with the horrors of cancer.  Look at my angel after his bath today, all wrapped up in his towels.  He deserves nothing but beauty and happiness.  Again, maybe he is just too good for this world. 

We had a beautiful treat today.  A very kind and generous friend treated Ty to his own, personal visit from a traveling petting zoo.  This was the highlight of our day.  Ty has been very emotional and generally sad over the past two days, but when the animals were here he perked up and he was very happy to pet them.  He even asked me to show the animals some of his toys (you can see I am showing the tortoise the new Lego Pirate we found in our mailbox today). 

All of the animals are rescue animals and they were very gentle with Ty and Gavin.  Nicole, the owner who came to our home, was nothing but gentle and kind with Ty.  She had a wonderful way with him and we are so grateful for that because we had our doubts about how Ty was going to react.  She was terrific.  For more information about the cause, visit www.animalexperiences.com.   And, check out the size of that bunny next to Gavin!

For her privacy, I don't talk about our Mely very often on this blog.  She has been with us since we moved to Pawling almost two years ago and she is the greatest nanny you could ever ask for us.  I believe she was sent to us on purpose.  She loves Gavin and Ty more than you can imagine.  Her visa expires tomorrow, and as of two weeks ago I would have been driving her to the airport tomorrow morning.  Thanks to Lou, our local congresswoman, and our team at MSKCC for doing whatever possible to extend her stay.  I am SO thankful to say that she will be able to stay in the US for at least another month.  She is part of our family and couldn't imagine if she wasn't with us, with Ty, during this time.  In fact, I can't imagine our family without her ever!



Batman Mely spoon-feeding the spoiled Captain America his soup

Sometimes I look at how big Gavin has grown and I get so upset about how much time I missed out on with him.  Thank God he has had Mely and our loving family to help out during our long hospital stays and emergencies, but it doesn't make it any less unfair for me and Lou.  As we were climbing the stairs to go to bed tonight, he said to me, "Mommy.  Mely is my best friend, and you are Ty's best friend."  I am grateful that he has such love for her.  I am also sad that he notices the difference between how much attention I give Ty.  I hope he will always know that I don't love him any less whatsoever. I hope he feels my love for him just as much as the love that oozes out of me for Ty.  I hope I don't smother him in an unhealthy way when Ty is gone - or, abandon him in a lonely world of depression.  Argh!  How am I going to do this?? 

I have mentioned Ty's bag of "stuff" before.  Since we started going to hyperbaric oxygen therapy and rehab in April I have been carrying around a backpack filled with all of his favorite things.  His Max and Ruby dolls, his robot, his little pooping cow, his batmobile, his seashells, his carnival tickets and so much more.  We were always adding things to his bag of stuff so I was always prepared to help him smile during the long, tough days in treatment.  I think I should carry it around with me forever.  Is that silly?  Maybe whenever I am feeling especially sad I can pull out the poop cow for a giggle.  Or his seashells and remember the day we collected them.  God, this is so hard. 

Your thoughtful words help so much.  They help me cope because I know that Ty is touching the lives of so many.  He has done more good in his almost five years that others will do in 100.