When I went to stand, I found that the strength had drained from my thighs. I felt weak, about to crumble and my face does, it contorts and pulls and my temple pounds. I keep my head low and the sobs come. I hide behind my sunglasses, trying to find a way out, where to go? I circle the outside of the hospital desperate to find a place to be alone. How can it just keep being bad news? Is it really possible that this is my child, that this is me, this is my life? She is too full of life and delight and joy. How can she be the one to die? I feel so weary. So very tired. I cannot even cry as much as I want because my heart feels dulled by the pounding of bad news after bad news. The pain in my face is intense, and in self-preservation, I try to keep the tears from coming – because it is not really the tears but the unbelievable pressure of pain, seeking to be released, pressing on the inside of my eyes and cheek bones. I feel lost – I don’t know where I can go to be alone with this grief. I wander and settle on a sunny set of back stairs because my skin is chilled and raised with bumps despite the warm afternoon. I wonder how long this torture is going to last and then immediately I correct myself and know that this torture is nothing to the torture of her actual death coming to be. I think of Rachel and Merle and my legs shake as I imagine how forlorn they must feel, how every day and every night is met with the knowledge that he is gone. Gone. I think of Allistaire and I am them, trying to live each day, trying to live in a life with a gaping, swelling hole. There is no thought now and no action that does not get linked with thoughts of her death. Any attempt to think of the future, whether a month or a season or a year from now, is tied to the vision that she may not be with us. I don’t buy a size up if I buy her new clothes at all. She may not be here –she may not grow into a size four. She asks me about being a baby and if she is big now. I tell her yes, you are big. She exclaims while asking, “I’m getting bigger?” “Yes, my love,” yes and it hurts so bad not knowing if you will ever really be big. I watch her eyes that lie in stretched lines, the corners of her mouth downcast, the slightest bit of pain in her expression when she asks, “Do you know that I love you mommy?” “This much and this much and up into the air,” she says with arms outstretched. I love her so and the pain slices through the moment. Every morning when I awake whether in the hospital or out, there is the dull thud that something is wrong, this is not what life is supposed to be. I went to my locked cupboard for room 269, to pull out the fuchsia towel I brought from home to dry the purple bowl and the spoon with the swirl at the end of the handle. I brought one green plate, one purple bowl, one glass with the yellow daffodil and the green leaves, one fork, one spoon and one knife. I suddenly saw Sten with the dish towel perpetually thrown over his shoulder when he’s in the kitchen and I missed him so bad and I found myself crying, missing a different life where there is not pain and sorrow and brokenness all around. I thought I was merely going to eat a bowl of GrapeNuts. I walked to Starbucks during her bone marrow test and I saw the boy with hat and glasses, the color of his neck both shockingly white with red blotches, his hands not really hands but melted, I assume burned. I want to run and run and run. What is this place? I am so weary of being surrounded by sorrow and defeat and broken and scarred and I wonder, will there ever again be good news? But I have to keep going. I have no other choice. It’s time for Allistaire to wake up from her nap and it’s time to change her dressing, after all, it’s Monday. We do this over and over and over and you wonder when will it end and you stop yourself, because it ending could be your worst fear come true. You can’t ask for it to end because you cannot imagine your life without this one you love so much, so thoroughly, so utterly.
Morphological results show that Allistaire’s bone marrow is about 70% cancerous. Flow Cytometry results tomorrow will give a more precise count, but regardless, we now have one option: the transplant with the matched donor. The bone marrow doctors are conversing to make sure that Allistaire really is qualified for this clinical study that is her only option. Tomorrow at 2:45 she will have a CT scan of her chest, abdomen and pelvis. She will remain sedated for an MRI that will look for disease elsewhere in the body, such as the brain and along the spinal column. I don’t know what it will mean if she does have disease in those locations. It will be likely a hard day because Allistaire cannot eat after 8am until she is out of her sedation, which will likely, be after 4pm. She cannot drink after noon. The tests are of course right during her naptime.
I am a reader. I love to read. When I was a teenager I would make myself sick on Saturdays, staying in my room to read a good book, not wanting to eat or even stop to go to the bathroom. In all the best stories there are unbelievable lows where all seems lost, but you keep going, sure you are on the scent trail of redemption – you are sure it will all work out even if all seems like a wreck. Every fiber of my being aches and burns with sadness and sorrow so expansive it cannot even escape the confines of my flesh. And I ask you Father, Redeem, Redeem, Redeem! Turn this around somehow! But I don’t know how long the story is. I don’t know at what point this day lies in the tale. Hold fast to me Father.