Ty has been sleeping so much over the past two days. I was starting to get very worried until he snapped out of it around 2PM and we ended up having a wonderful afternoon/evening together. I was so relieved because I am not prepared for him to withdraw from us like that. I need to interact with him. To see his smile! I don't know if I'll ever hear his laugh again (other than the fact that I carry that most beautiful sound in my heart everywhere I go), but if I can still make him smile then I can get through the day and cherish the memories made.
Today's smile of the day is brought to you by our friends Stan and Beth. I have mentioned them before because they always seem to be with us during some of Ty's greatest moments (i.e. when he first stood on his feet again after a month long bout with meningitis, or when he started eating by mouth after his second craniotomy). Even on their most holy day of the year, they took time out of their holiday to drive all the way up from Long Island and bring groceries and gifts. Ty loves balloons, and this Spiderman balloon is probably the coolest we've ever seen.
The only thing cuter than this picture is the picture I have in my head of Gavin's reaction to the balloon. He slept over his Nana's house last night and didn't get home until late today. He completely freaked out over the Spiderman balloon. He even tried to bring it to bed with him tonight :) I wish I took a video of him attacking spiderman with Ty's captain america shield.
Speaking of Captain America, today Ty told me that he wants ME to wear his Captain America hat (Ty and Gavin got matching ones). I don't care how ridiculous I look, I promise you I will be wearing this hat all over town. This winter and every winter. Ty will be laughing at me from wherever he is, and I pray I will be able to feel those giggles whenever I put this magic hat on my head. Oh Ty. You have always been so funny.
I talked to Ty about heaven today. It wasn't planned in any way, it just sort of happened when we were alone this afternoon and we were just staring at each other for what seemed like an eternity. I've tried to talk to him before, but I always get so weepy and he never, ever likes to talk about how he's feeling or what is happening. Today was different. Of course I said all of this through tears, but I also maintained a huge smile the entire time and as I spoke I saw real excitement in his eyes. I can't even begin to tell you how comforting that is.
"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!!"
I was totally winging it, and it sounded so silly when I was saying it, but I think Ty was eating it up. I had never, ever planned on having a conversation like this with Ty. Because I refused to believe that he is ever going to leave us. I still pray with all of my heart and soul that he will be healed, but I also want to be open about the strong possibility that he is going to die. It sounds so gross to put those words in writing. I want to throw up.
Anyway, my mind has been consumed thinking about some of the other beautiful children and their families that I've encountered over these two years. About Tanner and Ronan especially. I found a lot of comfort imagining them playing with Ty and I wanted to share that with him. I even told Ty the names of his friends in heaven, and how much they are just like him. The hardest part was trying to express the fact that he is going there without his mommy and daddy or brother for now. I don't know if I did a very good job with that, because I didn't want to scare him by telling him that he is going there without me.
"Do you remember how I always told you that God is everywhere? Well, when you go to be with God, you will be everywhere, too. So you won't really be leaving home, you can be at home with us and in heaven at the same time." This was about the point where I had to stop before I dropped onto my knees in hysterics. How is it possible that I am having this conversation with my baby boy who isn't even five years old yet? Is this really happening?
In my prayers I thank God for every single day with Ty and I talk about how I know Ty is an instrument of God because he's had a positive impact on so many people all over the world. Then, I can't help but begin the sales pitch. I tell God... "imagine what an impact he would have if you HEALED him now, with so many people praying for him? It would be an unquestionable miracle that is talked about around the world! Ty would grow up to be such an incredible adult, and he would dedicate his life to spreading the glory of your Word, I promise you that as his mother." As if I have to tell God what His will should be. I'm only human and I'm desperate. Lord, hear my prayer.
At bed time, Gavin gave Ty a big kiss and hug and said "I wuv you, Ty, so much." Then he did something silly that made Ty smile and I whispered "you are his big brother and you have to always look out for that lunatic, okay? I know that you will take good care of your little brother, always."
Today's biggest smiles of all were at bedtime when Lou made pretend Ty was an airplane and gently flew him around the house and up to bed. Bedtime is a beautiful ritual between Lou and Ty. He has always put Ty to bed since the day he was born because Lou used to work later than me and that was his chance for quality daddy time. Thankfully, Lou has also been able to work from home lately and take a short leave from his business thanks to the incredible support from his best friend and business partner, Charlie, and thanks to his kind staff. Lou is so afraid that he will miss out on these days with Ty, so he is with us every day and I am just so grateful. I couldn't do this without him.