Scarlett Update and more

There she is, our little monkey. She's growing like crazy, up to 10.7 lbs right now. This might have something to do with the fact that she's figured out that moving or crying burns calories. Since she never cries, and only moves to stretch (I might be exaggerating slightly, but only slightly) and thus has taken well to gaining weight. Not that we're complaining. We're not. She's healthy, alert, happy, and generally when you see her, you get the sense that she's content.

Scarlett loves to hang out with me, on a pillow next to me in bed. I'm in bed a lot, so it suits us both. But if not with me, she's upstairs in her crib. Has slept in her crib since day 1, and loves it. She's independent, and lets us know via monitor when she needs to eat. The funny part, is that once we call out we're coming, or enter the room she usually stops fussing. We think she's a genius because of this. Please, don't burst our bubble....we can't help it we think she's a genius!!

Other than that life continues to roll on. Being on the list is fine, nothing has changed. You'd think I'd be more calm, but I am not. I am anxious. I don't know how long I can last like this. I know it will get worse, and I am scared to suffer more. I am more scared of suffering than dieing, I don't know why. Of course logically that's not the case, I will suffer to the end of the universe and back to ensure that I will be here to see my daughter grow up. But the reality sometimes is that I can only take so much. I recognize that now. There is a limit. I have not reached it yet. I always thought there was no limit, but I know there is. That's why there's transplant. I guess that's part of recognizing limitations.

My health may be slipping, but it seems like people are reaching out more and more. We get packages for Scarlett nearly daily. From people we don't know, from family, from friends, from all over! We are in awe of the generosity, thoughtfulness, and sheer renentlessness of people. We're thinking of you, people are saying, and that lifts me up. It's amazing, and I have no doubt this will carry me right to the operating table. There is such a power in thought, prayer, energy, all of it. I believe it, since I can feel it! Thank you to everyone who has reached out, be it a phone call, email, note, card, facebook...whatever. I am amazed and inspired by your love.

Keep reading out there. I am here, I am strong, and I know when that call comes I will make everyone out there proud.