Desperate to get out, to find a place to be alone. Think – which set of elevators, which hall, where can I go? Allistaire is asleep in her room and I cannot possibly stay on the Unit; too many familiar faces, knowing eyes, empathy that invites you to let go and I just can’t. I just need to be alone. Even the bathrooms open into the busy hallway of the Unit. A few inches of distance with a gap around the door letting in the light – the bathroom is not an option. I walk hurriedly with eyes cast down so the red and swimming blue won’t be seen. I know what it’s like when you see another parent with that look on their faces, it makes it harder for you to maintain your composure, to act like everything is okay. Because just below the surface is that great immense depth of sorrow that you will be cast back into.
What’s the big deal. Today is just another day really. Allistaire is fine. She’s doing great really. But I know it doesn’t ultimately mean anything. It doesn’t declare what’s going on inside her flesh. This morning I had to change her dressing with the support and oversight of the Home Care Services folks. Austin, one of the Child Life Specialists, was on hand to help distract Allistaire with the iPad. I went slowly from one step to another, preparing the surface, washing my hands for 30 seconds, putting on Purell, putting on the non-sterile gloves, unwrapping the sterile package and removing the package of sterile gloves. Everything was ready and we laid Allistiare in the crib on the blanket straight from the warmer. The peace only lasted a moment. As soon as I began to remove the dressing, she began to cry. They held both of her arms down, while another nurse held her head away from where I was working. Allistaire screamed loud and screamed silent, back arching in fear. I worked with trembling hands, heat moving up my neck. Once I had the old dressing off it was time to put on the sterile gloves. It took me three pairs to get them on right without contaminating one of the gloves in the process. All the while they hold her down because she is now exposed and they can’t risk her grabbing at her lines. I begin cleaning the area with 3 special swabs, 10 seconds each. It’s cold and smells scary of chemicals. Each swab begins with dabbing gently around where the line comes out of her chest- this tender place with black foreign stitches. We stand there and wait while her skin dries and Allistaire writhes. I place the new bio-patch around the line and begin a different type of swab that creates a microscopic film on her skin so that the next time we remove the dressing it will rip the film and not her skin. Just as I’m almost done with this, I accidentally touch the tip of the swab on the nurse’ finger where she firmly holds Allistaire’s jaw away from her chest and I continue to swab for a brief fraction of a second before I realize what I’ve done. I’ve contaminated the area where the new dressing was about to go and I have to start all over. I can feel the tears rising, threatening to overwhelm. I must get through this. I go again through each step and at last the dressing is placed and I gather Allistaire in my arms. She folds into me and tucks her head in the safe place between my neck and shoulder. I hold her and hold her and cry and cry. Everyone moves around me. Throwing away the packages, washing hands, gathering their things. I stand in the midst holding my precious one, the immense saddness welling up and over, flooding down all around me.
Somehow this changing of her dressing, the holding her down, the arching of her back and relentless cries, well, they are really the only and, therefore, the very tangible, expression of Allistaire’s own pain and fear. The rest of her time and days are spent doing pretty normal things; things that at least have become normal. The look of terror in her eyes as they look into my eyes, is like the icy tip of the iceberg exposing the vast reality below. Not long later we were out walking the halls as Allistaire rode her most recent favorite scooter and rocket ship. Allistaire was mostly back to her cheery self but my sadness lay just below, constantly like water, looking for a crack through which to flow unhindered. We rounded a corner and the intercom declared “Code Blue;” the red light was on over the bathroom door and the staff came running from all directions. We kept moving to get out of the way. I watched their strained faces flash by as they willed their bodies to respond with rushing speed. It was a false alarm. The person was okay. Yet the crack was found and I felt the tremendous pressure of the wild sorrow demanding to be released. What am I doing here in a place where death is ever at the door? This is not a place where we have a cheerful, colorful room with floor to ceiling windows. This is not a place where Allistaire giggles and makes “silly eyes,” and plays endlessly on the bikes and is declared the cutest little one over and over. This is not the place where I have packages delivered and I heat up food for dinner. This is a place where death is the foe. We are not fighting sickness. We are fighting death. Death, wretched death. I am fighting someone who stands guard in the corner of the room demanding over and over to take Allistaire away from me; to steal her away so that I will never hold her again. But she’s dear to me I scream. Can’t you see how much I love her? Don’t you know how long I longed for her? I had a miscarriage between Solveig and Allistaire and for months I fought the fear and sadness of what it might mean to not have another child. Having Solveig in our life showed us the joy and wonder it is to experience another little life, to add life to life and I could not imagine for our own sake and for Solveig’s, having an only child. I prayed so much for another child. I found out I was pregnant with Allistaire the day I would have been due with the other baby. Around the time Allistaire was one, I realized that if that other baby had lived I wouldn’t have Allistaire. I would have another child. And I thanked God for this little beautiful one. No matter how much love I have for Allistaire, it has no capacity to hold her to me. My love for her cannot prevent death from prying her from my hands. And I hate this, it is a ripping, stinging, sharp and deep pain. I know everything probably feels amplified right now because her bone marrow draw is schedule for tomorrow morning. It feels like the course of my life is hanging there on the tip of the sharp tiny point of the results of that test.
Allistaire’s ANC is up to 175 today which means it could very possibly be up to or over 200 tomorrow. The doctors told me they will have to have test results back before they would let us go home, if they let us go home. If she’s in remission (less than 5% blasts), we can go home for a few days. If she’s not, we’ll have to discuss things they said.
I’m sitting in the Family Resource center in the most private chair that I can find. To my left out the window, over the treed hill of University District, I see the snowy, jagged ridge of the top of the Brothers (in the Olympic Mountains). I don’t have words for a prayer. I sit slumped in this generic chair in an ordinary room. Ola Podrida plays again on my iPod. The thin red line telling me the battery will run out at any moment. My favorite song is on and I know that in moments I will hear that liquid light, that yellow sheer sound I love. This morning while Allistaire ate her breakfast she watched one of her Christmas Veggie Tales videos. I wasn’t paying attention as I cleaned up the room. “And unto you a savior is born.” Those were the words I heard. I need saving. I am ever on the verge of going down and I cry out over and over, “Lord, catch me, I’m going down.” Here His great arm reaches to me, grasps my forearm and lifts me.
Lest I leave you with only sadness, let me add this. My face is aching and my eyes tired and puffy. A headache has threatened all day. This is why I try so hard not to cry. I suffer all day for it. What makes this all so strange is the way in which great joy and delight sits right along side sickness and possible death. Yes, I’m weary from sadness but I keep having this sweet little face and breathy little voice, and wiggly little adorable body declare to me over and over, “Look Mommy, I’m alive, I’m alive and isn’t there just so much to rejoice in and delight in?” So tonight I leave you with my first videos taken with my iPhone – no editing, just raw life with our little beloved Allistaire today. (By the way, while the videos are vertical in my iPhoto, they’re showing up annoying and horizontal here. Sorry, I’m still going to post them. I’ll attempt to figure it out tomorrow.) And thanks to Jenny and Leo for the beautiful little hat. She was already dressed for the day. The nurse delivered it right after the dressing change and how fabulous the way it matches!