Cheated and Determined

It's hard facing this again: rejection. It's hard because I feel like the last five years without was a cheat or that I was cheated because it was a trick to a false sense of security. It's been nearly five years since Shayna's last official rejection and four since we really had to work hard for her health. There's no reason for this rejection; it just is and it just sucks. (By "reason" I mean there really is no medically known or even guessed at reason for her to be in rejection; it just happens.) It also sucks because Shayna gets a real taste of the hand she's been dealt. I get to begin to teach my precious, precocious, beautiful, brilliant, spunky, creative six-year-old just how delicate a balance her life can be. (She sang a song on the way home from Pittsburgh about how she wished she had never needed a liver transplant.) We talk a lot. We keep it at her level but we also don't hide from any of it. With all this, that old fire has been rekindled: I will do anything for my child. I remembered the determination I used to have and wondered, since I didn't feel it as much recently, was something wrong with me? No. I just didn't need it. Now I need it again so it's back. I am determined to do anything for this child to give her as healthy, strong, and full a life I can.

We have labs tomorrow and at least every week as we hope to begin weaning her from the steroid prednisone. It's only been a day, but she already needs less sleep and more food. I'm going to start a Tuesday lab day routine next week so I hope we'll be able to begin weaning by then. Otherwise, Shayna is happy and feels no worse for wear. After riding bikes out front with Elijah today, she played with Maya in the back yard, "chasing" her around, both of them laughing. Shayna's face was also beaming with pride when she spotted Nahum and I smiling at them from the window.

From a warm week a month ago, but so appropriate for today.