I have had three very tough days in a row. That's going to happen sometimes. I am writing this knowing it will be a short post because I am swollen from tears and fighting a terrible headache from the crying I've done tonight.
But I am okay because I am trying so hard to occupy my time doing things to help Ty, the next Ty. It has been such a blessing and a curse. I never want his story to end, but with that comes a tremendous amount of stress and longing. I don't want to be working on my laptop 12 hours or more a day just talking cancer research and fundraising. I am stressed out in a way that I have grown to preach against ever since my baby got cancer! I can't help but feel such an enormous responsibility to make this right, and I just hope I can do something in this meager life of mine, to make a difference in childhood cancer treatments. But I need to balance that time while practicing what I preach and enjoying my Gavin, and I need to figure that out.
I was driving somewhere today that took me past the Putnam County Hospital where I got Ty's weekly bloodwork done most frequently. Memories of the drive came rushing in (as always, because this isn't far from where I live). How I would have to make pretend like I didn't know where we were going. How I would try to distract him or redirect his questions about whether or not he was going to get "bwud-work" because he knows that means a painful needle in his arm. Every week, at least once, he had to get bloodwork. One time he fought me so hard, he tore off his sweatshirt, scooted out the lab and down the hall screaming, "no, no, no...." while we were waiting. Someone walked past, having no idea that he was too handicapped to walk, and said something about how he would have a better chances of escape if he started running. Oh, how he would have ran had he had the chance. Believe me. I just let him scoot and scoot away. Run baby boy. I wanted him to feel like he had some control for as long as possible, until they were ready for us anyway. On that day, I was grateful for a young man, new to the lab, who brought some dinosaur fruit snacks with him in his own lunch. Whew! That brought my Ty back to the room.
I hope that my love story with Ty lives on forever. What he has been through alone shows how his legacy needs to live on. His story needs to be told. The truth is... he is my son. Not my Uncle, my Dad, my Husband or my Brother.... all of whom I couldn't imagine losing. But I would trade any one of them to have Ty. I always offered myself first, obviously, and as for the rest of them... they are older and enjoyed life. I offered them up, too. Ty never had that chance at life. He was 100% innocent. It's just cruel and unfair in so many ways. I love Ty more than anything imaginable. Our love story should live on forever. The good news is that Ty continues to fill me with his love everyday and on my good days I can go on living life and smiling at the secret truth that I know. Bigger things await.
Oh how I miss his skin. Milk and Honey. Kissing his beautiful, full lips. And his laugh, it is will never be forgotten. All I want is my child back. My healthy child back before all of this cancer bullsh*t that destroyed his childhood.
My Gavin is my lifeline. I kiss him a million, trillion times a day. Thank you, God, for him.