Torment

I feel like we're living on an island. I have been overwhelmed by the kindness of people, and in some ways I feel more connected and supported than ever before. But despite this, our lives have become so different that it seems that real life is going on out there, ebbing and flowing, moving swiftly around the bubble in which we live, but not touching us. I spend my days watching for the fingers of pain to infiltrate the beautiful, delicate body of my baby. Trying to beat it back with a barrage of medicines. In the fleeting moments when she isn't hurting I try to squeeze in a moment of fun, trying to remind us all that she is still a child and that her life is supposed to be carefree and filled with joy.

But the nights are the worst. Tessa sleeps with us, carefully sandwiched between Casey and I. This way we will always be there when she wakes at night and we can more adequately watch her. Last night Casey and I watched as she whimpered in her sleep, softly crying out "it hurts". It is torment. Do you wake her and let the pain crash over her so that you can give her the medicine, or let her sleep where the pain is ever present but muted? When the cries became louder we woke her. With every scream your heart breaks open. We give her the medicine, but of course it takes time for it to work. Her toes curl under and her back arches as the pain wracks her body. She is furious about what is happening to her and climbs out of the bed, storming into the hallway. I sit in the hallway, giving her space, and the pain is too much. She crawls back to me to be close. I sit with her there for a half an hour. The whole time she is crying and screaming and beating the floor with her feet, because her arms hurt too much to lift. And I wish I could cry and scream too. When the medicine finally kicks in she is spent and I carry her back to bed. As we lay there, her eyes closing, it begins to rain. It feels as though the heavens are weeping for us, because we have to be strong for our girl. As the lightening flashes across the sky I feel the screams that are bound within me loosen. The tempo of the water on the roof is cathartic, and we all drift off in exhaustion.