Missing you, Ty. So much.

"These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe."

I can't stop saying "I'm sorry" under my every breath.  Every minute of every day, that's all that is going through my head.  I can't believe Ty didn't survive.  I can't believe he is gone.  I miss him so much I can't possibly put it into words.  I am lost and so, so hurt, but the worst part of all is remembering how much he endured.  Thinking about all that he went through in his treatment, and how sorry I am that his cancer killed him after such a brave fight.  In the last two years, the only thing that kept me strong was "knowing" that he would be okay in the end.  That he suffered so much, but in the end he would be rewarded with a charmed and beautiful life.  I am just so sorry that it didn't work out that way.  I was supposed to be able to take care of him... to kiss his booboos and make it better.  I told him over and over again that everything would be alright.

The quote above from Grey's Anatomy is posted to Mighty Mikey's caring bridge site.  I always loved it because it embodies everything we know as moms with chronically ill children. 

Lou and I used to watch Grey's Anatomy. I'm sure it was my doing, but he used to get sucked in along with me. Ironically enough, we both remember the episode we watched when we decided to stop recording the show. It was when Ty was a baby, but way before he got sick. Grey's always gets you with the patient stories, right? It was an episode with a Dad and his young, adorable daughter. She had been fighting for her life for a very long time, and she was finally going to die. As he frantically searched for options and talked about moving his daughter to South America for a new kind of treatment, one of the main characters (Meredith, maybe?) tried to explain to the Dad that she likely wouldn't survive the plane ride and that it was time to let her go. Enough was enough. Cue the heartbreaking goodbye and our non-stop tears while we watched from our couch - just imagining having to say goodbye to our own baby was inconceivable. "Let's never watch this show again," he said.  "Agreed. Never again." And, that was it. We never watched it again. Unbelievable that we would find ourselves in that exact same situation just a few years later, when our baby who slept peacefully in the other room while we watched TV, would give in to his cancer and die in our arms, too. Only this time it was real life.

Tonight I watched Gavin play in the big tub, the one that was always reserved only for Ty because it was large enough for his bath chair.  I couldn't stop the tears, I cried a river, because I was overwhelmed by the perfect curves of Gavin's shoulders, his round, healthy belly, his pudgy little fingers and his strong, straight back.  I compared every part of his body with my memories of Ty's naked body, instead.  Every scar that I've kissed over a thousand times.  I know the exact location, length and width of each. My poor, poor baby.  How skinny he was.  How beaten up he was.  How he never stopped smiling, regardless.  He was so amazing.  No wonder I was so sure he would be okay.  Looking back, I think he made me believe because I needed to even more than he did.  He put on his happy face through thick and thin  all of us.  God bless this beautiful boy.  Here he is just two days before we were back in the hospital for the very last time.  Smiling big, sticking out his tongue and teasing me. 

The ladybugs were everywhere today.  What I love most about the ladybugs is that they always appear at the perfect time to remind me that Ty is with me.  When I was staring out the window thinking about Ty, I was suddenly distracted by a half dozen of them that gathered on the screen.  Outside when I was flooded with memories of a healthy Ty as Gavin and I were playing on their swingset, another ladybug hovered in front of my face for what seemed like forever.  When Gavin was having a fit outside of a very quiet, very public place today, I was able to calm him down when a ladybug landed on my leg right in front of him and I showed him, "Look what Ty sent you!"  I let the ladybug crawl all over my hands so he could get a better look at it and he loved it. 

 

I am just sad, but I know that Ty is everywhere.  I enjoy hearing all of the stories from others who are inspired by Ty and who he visits with in his own special way, too.  I am so proud of all he is doing, even now, and I always will be.

Yesterday was a great day, in fact.  In the midst of our grief, people continue to do amazing things in Ty's honor.  Some of you have been following Ty's journey for a long time now, and you may remember that he was dubbed an honorary member of the Fordham football team last year.  He loved football and being part of the team was very exciting for him.  This year, his team wore gold shoelaces and gold towels, they collected funds for pediatric cancer research, and they wore "Ty" on their faces during the game.  We were there on the sidelines to cheer on our favorite team, they allowed us to participate in the coin toss, and they awarded us the game ball afterward.  It was very, very special and we are so grateful.  Last year they revised their "Fordham Fight" song to include him in the verse, "we'll sing our battle song for you, SuperTy!" and he thought that was the coolest thing. 

I just want to repost some of the words from one of those heartfelt players that we received last year.  I am so proud of them all that they continue to keep Ty in their hearts and to be inspired by him.  Last year I had big visions of Ty playing football for Fordham someday.  Yesterday at the game Gavin, who never showed an interest in football before, told me that he wanted to play with the team.

Ty, even though you are still a little boy, you are stronger and tougher than all of us big football players can ever be. We hope our song helps you keep on fighting like we know you will. You continue to inspire us and make us all so proud to be your friends.

You are such a brave little boy for everything you have done and overcame. Your little brother Gavin looks up to you for everything, and we want you to know that you now have 100 big brothers to look up to on the Fordham football team.
　
Ty, what you go through every day is a complete inspiration to each and every one of us. We look forward to a long friendship ahead because once you’re a Ram, you’re a Ram for life! Best of luck with everything! God Bless.

A Ram for life indeed.  Thanks to all of our "teammates" who showed real heart yesterday.  It was such a great day, and a great victory against LaFayette!  Congratulations on a winning season!

Lou and Ty at the game last year



Gavin on the field yesterday

Gavin is doing well, he is pretty oblivious to my tears (which I hide from him very well), but he has his own sadness at times.  He talks about Ty several times a day, unprompted.  He says things like "I miss Ty.  I wuv Ty."  It makes me happy that he thinks of his brother often, but I worry about him, too.  He is too young for bereavement counseling programs, but I have been reading him a bunch of great books on the subject and he seems very engaged in them.  In the meantime, I think going to school is the best thing for him because he truly enjoys being around other children after being so isolated for so long in this "sick" house of ours.  He is mostly happy, don't get me wrong, but he misses his brother and that is not fair.  I briefly mentioned this one recent development that makes me smile big.  Gavin has totally and completely adopted Ty's love of superheroes over the past few weeks.  He shows no interest in Toy Story anymore ;( it's all superheroes all the time.  Today he wore his spiderman costume for 11 hours.

As always, Lou has been very good about getting the family out of the house.  Yesterday was the game.  Last night we celebrated his birthday with family and friends.  Today we went to the buddhist monastery to enjoy the outdoors and some serenity.  Next weekend, the Great Wolfe Lodge, and he is even planning a long overdue weekend away for the two of us in December.  Slowly, we are trying to heal. 

The Monastery