Safety is the word that dominates my days. There are germs and dangers and things that I can't control, but desperately want to, and must, because this is my responsibility; the well-being of my family rests on me.
Adrenaline charges me, keeps me in constant motion from morning until night. I am ready, ready, ready. I am crouched on the ground beside Sasha as he discovers things of great importance. I am chasing him down the halls and through the grass, steadying him, guarding him, making this world feel to him what it is not for me. So much is waiting for him on the other side of this door, or that one, and without hesitation he boldly pushes it open and races head on. Sasha has no idea the direction we are venturing. He doesn't wonder what our life will be like. When my arms catch and cradle him, he is right where he needs to be.
Sasha has not napped for two weeks whether in his crib, laying beside me in bed, or strapped to my body and a wild, unslept child, presents new challenges to safety. He has heightened the stakes for me in the way that looking at the calendar the other day hit me with a rush of awareness that our time before the stem cell transplant is running out. And yet the list of preparations does not seem to diminish at the same rate. Most days I am light headed just thinking about it.
In every spare moment, I undertake the organization that will allow us to tuck away or give away much of what we've accumulated over the years so that our home can be safe for Aaron's return. Our house must be spare and cleaner than we have likely ever experienced. Nothing must be left untouched because it may harbor dust, bacteria, or dreaded mold. As I sort and pack and pare down what is familiar, I find myself longing to leave this life, our life, untouched. What will fill this space that I am creating? What does our brand new life look like and who holds the key to this life? I uncover possessions I don't expect to find and linger over them. It is surprising how much love I feel for them right now in this moment when we are in the verge of such a shift. I see spareness and wonder how things will look in the future. Hysteria rises then is calmed. There is no certainty, but I must let go. I must make room for what is to come.
This week, my friend, Tary, came to entertain Sasha so that I could tackle this project with more focus. With Sasha not sleeping, she became his nap companion and cuddled him in the bed, while I attended to an overstuffed office closet and wrestled the pain in my stomach that he was not in my immediate presence. On these long chemo weeks when Aaron is struggling with his own pain, my inability to truly control the unfolding of our days becomes all the more apparent to me. What I want is our life back and I can't have that so I must work toward what will be ours. And so I do, hour after hour, evaluating, addressing, shredding. By the end of the two days, I am close to checking off another item from our list but know that this won't allow me to sleep at night. New considerations radiate from each task, and the list grows exponentially. I wonder how much I will complete before we must leave for Boston and the hysteria is reignited.
Then a new agony is created. Tary asks to take Sasha on a walk without me. I am in a near panic. No one has ever driven Sasha or taken him out into this world except Aaron and myself. I drive the proposed walk, point out every aspect of what she can expect, show her how to use the stroller and even still I stall. He is tired. He needs his lunch. Let's wait for Aaron to come home. And when he does, he suggests it will be a good breaking-in experience for what will happen this summer when multiple family members and friends will help care for Sasha while I am with Aaron in the hospital. But I'm not ready. Not yet. Not yet. But no matter how much I protest, it is coming. Things are disappearing from our lives day by day.
Sasha is returned to me happy and unharmed. Tary departs with a promise to come again. Aaron manages to enjoy pleasure with Sasha despite the physical burden of this week. I am grateful to have a moment to write for the first time in many many days, and though it is painful to find my way back to words after an absence, and to wonder if I will ever be able to write anything substantial again, I am settling into this process as well.