Okay, so today is a strange and difficult sort of day. I have been riding an emotional roller coaster on no sleep through this process so far, but today is especially difficult. Miss Boots went to bed at 11 pm last night, relatively early considering she's been going to bed at 2 am, but of course, my internal clock did not get the memo that we now have an opportunity to sleep, so we'd better take it. Today, the Busulfan is added to the Campath, and so far, she is handling it well, she seems to be a little tired (not sleepy, but a run-down kind of physical fatigue) and weepy, crying actual tears over things that would normally not be such a big deal to her, and she said that her bones hurt. I have been trying to be especially patient, giving extra hugs and kisses, trying to be hard when I need to be, but soft when it will benefit her more, an extra hug when she's breaking down, a cuddle when she cries.
Then, as she is wont to do, Miss Boots threw me for a loop. We were looking out the window at the incredible view out of the large bay windows in our room, and she said that she wanted to touch the sky, wanted to fly. When she asked what the sky felt like, I told her that it would feel like air, like nothing, and instantly regretted it, because my addled, sleep-deprived mind should have kicked into Mommy-mode and come up with some kick-ass theory for what the sky feels like. Maybe it's smooth, like glass. Maybe it's supple, like leather, or maybe it's cool and changeable, like water. Instead, my brain on autopilot switched into Teacher instead of Mommy and attempted to explain to my four year old about the water cycle. She looked at me like I was crazy. Ironically, she would have believed that they sky is spongy and warm like fresh-baked bread if that's what I had told her.
Then she got sullen and silent, and after awhile, when I asked what was wrong, she said that she was sad, and when I asked why, she said that she didn't want to be here anymore, that she wanted to go to Heaven. I asked her why, and she really wouldn't tell me, so I tried to explain that she couldn't go yet. She asked me why. I told her that I would be very sad if she went to Heaven now. She said that I could go with her, and I broke down, and told her that if she went, I couldn't go with her, because it wasn't my time to go yet. Seeing my tears, she immediately recanted, and produced fresh tears of her own. "Don't cry, Momma," she said, wiping my tears, "I promise I won't go to Heaven right now."
When things calmed down, I asked her again why she wanted to go to Heaven. You will never in a million years believe what she said, but here it is, unvarnished, unembellished. She said "Because it's my Heaven-chance". I took this to mean that this is her chance to go to Heaven, and I confirmed this with her.
This conversation makes me nervous, and I will tell you why. I read somewhere once that each of us plans out our lives in Heaven before we get here, and we leave ourselves a certain amount of "outs", exits, near-death experiences that give us a choice of whether to stay or to go on to the next plane. I believe I have had several of these in my lifetime--by my count, I have about four or five lives left. But I have never shared this with Sarah. I have taught her about God, about angels and Heaven, but who discusses reincarnation and the specifics of the afterlife with their four year old? Not only was it eerie that she said this was her "Heaven chance," but that she knows this is one of her possible exit points.She still sees the angels, and she has been asking me many questions about Heaven and God, as though she is preparing herself to die. I cannot bear this. It was hard enough to stomach the thought of possibly losing her when her chances of being cured were 80 to 90%. Right now, staring this monster called Cancer right in the eye, how do I cope with this? How do I help her cope with this, when all she wants to do is go home, and be left the eff alone? How can I make her understand that all of this torture, all of this pain, all of this is to save her? What do I say? I don't know what I should have said, because the Lifetime movie part of my brain shuts off if I've had less than seven hours' sleep, but here's what I did say.
I explained to Sarah that I needed to go to Heaven first, when I'm very old, a very long time from now. And that she needed to hang out until she was very old, a very, very long time from now, when she was a great-grandma, and that when it was her time to go, I would be waiting for her in Heaven, and that I would come to get her when the time came.
We left it at that, and she spent the rest of the day playing with her "boyfriend", Julian, which made her as happy as one could possibly be when one's DNA is being chemically altered and they subsequently feel like crap, and is being forced into submission for temperatures and blood pressures every fifteen minutes. I think I peed once today. Seriously. I cannot tell you if I ate or not. She keeps saying she wants to go home, but she has made no more mention of going to Heaven. I cannot be sure what this means, but I can pray that she will fight just a little harder to stay in the world now that she knows how very badly I need her to stay.