I went into the kitchenette to heat up left-overs for lunch. Behind me came another mom I had met a few days before. Within seeming moments of sitting down at the table together, the tears ran down her face. Over and over she sought to wipe away the flow as she asked over and over, pushing the food around on her plate, how could this happen to our children? I look at her and think of what an immense treasure of memories she has collected over these 19 years with her daughter. So much to mourn for. She looks at me and asks how this could happen to someone so young, so small as Allistaire. We mourn for the memories that cannot be lost because they may never be gained. The hardest thing she says, was eating Thanksgiving dinner in the hospital cafeteria alone and not even being able to get a piece of pumpkin pie. “Oh mom, we have bigger things to worry about than a piece of pie,” her daughter responded. It’s true, there are much bigger things to worry about, things that only occasionally we find the courage to speak of. All of the pain, the fear, the weariness, the sorrow gets heaped on that poor piece of pie. We can talk of pie. The necessity of pie on Thanksgiving is something for which we can find words.
My eyes take in her slender frame, the hair an inch or less long and sparse so that mostly scalp is seen. Her skin a strange shade of orange brown. Down that narrow rectangular gap where her hospital gown doesn’t fully close across her back, you see a barrage of colors, purple, yellow, raw red. You don’t get a good look because you wince at it’s sight and turn away. Her features are hard to distinguish as though she must be lost somewhere behind that weighty, thin gray shadow.
He must be adopted I think. I see his mom. I investigate his father’s features. I see no connection between the little boy I see and these parental faces. His luscious orbed cheeks distort the proportions of his nose and lips. Unlike the crashing waves of the mighty sea that know to stop at the shore, hair continues down his scalp over his forehead and down the side of his face. His eyelashes so long and thick, every girl is envious. He walks with his mighty torso proceeding him like a man puffed with pride.
The longer you are here, the more faces and stories you take into yourself. Like some sort of magnetic force, they irresistably bind to you, for you see them not as someone else’s life, but the possibility of your own future. In a strange way it is like looking into the curving line of time and witnessing what may be your days ahead. After a few weeks of being here I felt compelled to put an 8X10 picture of Allistaire on the door to her room. She’s sitting on our unmade bed at home, jammies on and about 8 necklaces strung around her neck like she just flew in from Mardi Gras. Her white blond hair wisps and curls angelic, big blue eyes luminous, and the warmth of pink life on her cheeks. This is our girl. THIS is Allistaire. Come what may, I silently thrust my stake in the earth and proclaim that though unrecognizable flesh may come it does not define her. This rotting decay caused by poisons meant to kill the killer will not have the last word. No matter how it may, piece by piece, pull her apart, the essence of Allistaire, her spirit cannot be taken down by the destruction of her flesh. The light of her spirit my be dimmed in it’s expression because of faltering eyes, mouth, legs and hands but the flame of her spirit’s life cannot be extinguished.
I wrote these words nearly a month and a half ago. Before I was done writing, we got the wonderful results from Allistaire’s first bone marrow test and then these words seemed a bit out of place. We had been seemingly whisked from the land of fear and of the shadow of death out into the hopeful light of day. But today I want to speak them aloud. Part of this journey with Allistaire is coming into contact, into closeness with the stories of others. These are our neighbors, the beings, the spirits that inhabit this small space in the world. I went to heat up my lunch in the kitchenette today and in came a young woman with whom I have become friends. She has been staying here for more than a month to help care for her friend who had been here since July. Her friend is the 19 year old girl I wrote of above. Her eyes were red and soon I was hearing the unspeakable words. The chemo isn’t working. The tumors are getting bigger; they are everywhere. The one in her neck may cut off her airway if it continues to grow. This was the last type of chemo they could try. The doctor asked her today if she would want them to put a tube down her esophagus to keep her airway open; if she would want to be on life support. They are waiting for one more week of chemo before they do another PET scan. They’ll check then to see if there is any positive progress. If there’s not, they’re talking about taking her back home.
What can I say? At some point during the first round I asked one of the nurses if people actually die here on the Unit. She said sometimes, but that often they are up in the ICU or now I know, perhaps they go home. Death. We know it is a real possibility but it is so strange and so foreign despite being so utterly common. Friends, I implore you. Please pray for this young woman. Please pray that the Lord would even now bring healing to her, that He would spare her life. More than anything, pray that the Spirit of God would move in close, that He would be so very near to her and to her mother. Please pray that in these strange times between life and possible impending death, that the mighty hand of God would be at work in her heart; that somewhere in the midst of this horror, peace would enter the room and fill her, saturate her. Ask that God would fully open her eyes to Him that she might see Him fully and be irresistibly drawn to Him. Oh Father, my heart aches beyond words for her and her family. What must it be to see the world awakening from winter; to see the sun and the buds on the trees, to know the birds have returned and to remain trapped in the darkened room knowing your own life may be coming to an end. Father, be gracious to her. Come along side her and speak clearly to her. Give her courage. Give her hope and even hope for joy, for the fullest fullness of life. Move so mightily in her that she might even find herself eager to let go of this broken flesh that she might see you face to face. My own hope is this and I pray it for her, “Though my flesh it be destroyed, yet with my eyes, I shall see God.”
Thank you for your prayers, for the ways that you have given of your time and heart on the behalf of another. Thank you for doing so for this woman and thank for doing so for Allistaire. Having your own child do so well when another’s may be lost is a strange sort of hard. We do not deserve life anymore than she does, but for now we have been given it. Thank you Father for thus far sparing my child’s life. Thank you for every day that her little flesh rises up once again. We arrived this morning at 9am. We are in our same room – again. Three for three. What a small but delightful treasure it is. By 10:10 am Allistaire’s next round of chemo began moving into her blood. There are two separate chemos that she will get in the morning and one at night, all for five days. She is scheduled to finish her chemo by 11:30pm on Monday night – the night before her 2nd birthday. We are allowed to go home after she’s done but must return if she gets a fever. Unfortunately, the chemo she gets twice a day, which is a 10 times stronger dose than last time, is known to cause fevers. Please pray that if it is the Lord’s will, He will protect her from fever so that we can return home soon and be with Solveig. Pray that once again, the Lord would continue to teach me what it is in practice to live with open hands and accept whatever He has for us in the days ahead.