“I’m so afraid,” Allistaire cried. Afraid of getting a tube up her nose. She shook in fear, head hunched and little shoulders curled in. “Allistaire, I am not going to make you get the tube. You can decide. I’m going to let you choose. Either your tummy can hurt and you’ll keep throwing up or you can get the tube that will help you feel better even though it will be scary at first.” Rubbing her back I heard her barely audible words, “I’ll get the tubie.” Okay, okay…I went to let the nurse know. The doctors put in the orders and the nurse and I brainstormed the nurse best able to get the tube in quickly and skillfully.
Wednesday’s CT showed a hematoma on her duodenum right where the GI doc took biopsies as part of the routine endoscopy. Despite getting a platelet transfusion that morning, a swelling bloody bruise had blocked the passageway to Allistaire’s intestines thus forcing all of her stomach acid and bile up and out and preventing anything from going down. Unlike her previous ileus in July where her gut simply stopped moving, in this case there is an actual physical blockage that given time will heal. Wednesday night she was admitted to the Cancer Unit where she is getting fluids with electrolytes and as many of her meds that can be given in IV form. Unfortunately not all of her meds, especially a number of her heart meds, can be given through her IV so at this point she is just not getting them. She also has not eaten since Monday evening at the airport when she was made NPO (Nothing By Mouth/Nil Per Os). At this point, because we hope this resolves soon, she is not on TPN (IV nutrition). Because of her throwing up, her brain MRI and PET/CT which were scheduled for Thursday were cancelled due to the greatly increased risk of anesthesia.
Allistaire has simply laid in bed. She is not interested in almost any activity. She speaks very little and isn’t willing to engage in our usual joking. Her eye is bulging more and more prominently with a disturbing degree of white around her pupil. I try to make myself look at it, to say, “I see you. I love you and I will not look away from who you are and the battle you are in. I will not turn away, though it pains me. I love you. I will never turn from you my dear sweet child.” The contrast from just Monday afternoon rips at my heart. That girl ran and giggled with joy and was full of bright bursting life. This girl just lies on her side, sucking her thumb and gripping doggie. Not much of anything interests her.
In rounds Friday morning we discussed the possible advantage of a NG tube known as a Salem Sump which, using intermittent suction, pulls out gastric contents. The GI doctor did not think it was medically necessary for Allistaire to have one but was in full support to provide her comfort. Once Allistaire agreed to the tube, Catherine, one of the charge nurses, gathered the necessary materials and graciously talked Allistaire and I through the process. Allistaire sat on my lap with my arms around her. She was very brave, though terrified. The tube going down her throat caused her to gag and throw up and tears streamed down her face as she kept drinking at the insistence of the nurse in order to help the tube go down. Catherine did an excellent job and got it just right on the first try.
As soon as she could speak, Allistaire began to scream that she hated it! “I hate it! I hate it! I hate it!” she bellowed over and over, slamming her little fists on the bed. The nurses cleaned up and left the room. After minutes of yelling that she hated it, she demanded, “Take it out! Take it out! Take it out!” Without relent, her fury burst out before her, explosions of rage igniting the air. She sat on my lap, her back against my chest and I loved her. I rubbed her arms. My heart heaved.
She turned and faced me, her blue eyes blazing, sheen of tears. Blue eyes I had given her. Blue eyes from my mom, from her mom and my grandmother from hers. Five generations of blue eyes, her’s fierce and pleading. “Mommy, mommy, take it out please! Please mommy. Please mommy! Mommy please. Please take it out. I’m begging you, take it out, please take it out.” On and on. My eyes filled, face contorted and sobs welling up from the deep. I rubbed her back and held her and said, “No. No.” “Please Mommy! Please, I’m begging you mommy, take it out! Take it out Mommy please!” Our two faces facing each other each, red and puffy, streaming tears. “No, Allistaire, I will not take it out. We are going to give it a try and see if it will help you feel better.” Relentless were her pleas. Inside my heart was tormented, hating to see her so afraid, so angry, so desperate, so insistent that I help her and knowing that in my love for her, I would have to hold strong, denying her the very good that consumed her mind. The only good that seemed good to her was that tube coming out of her nose and throat. In that frenzied moment she could not imagine the relief she would soon feel. But oh how my heart hurt for her. What brutality to see your beloved hurting and to know you put them in that position and though you could end their pain, you will not for the very reason that you love them and you are in a better position to know what’s best for them.
In the midst of her rage, her agonized begging, her quaking little body, sitting on my lap, I, her mother, the flesh that bore her, my being overlapped with hers, my heart swelling and leaking out around me with pain because of her pain, sorrow for her sorrow, the Lord whispered into my heart a clear and quiet and sweet tender truth, a barely audible love song: “This is how I love you Jai. You rage in fury. You demand Me to make it stop. You scream. Your heart breaks because of the terror, the pain – it swamps you and it is all you can see. You beg Me to make it stop. You plead, Father make it stop, make it stop. And I have not. I have not stopped the onslaught. You feel your very flesh being flayed open and you beg me to see you and to stop this horror. I see you my child and I love you. I will not turn away. And though you do not understand, and though it feels like cruelty to you, like abandonment, there is a reality and future you cannot see – a sweeping truth that far exceeds your terror that in the expanse of time will be a vapor. Not only will your all-consuming sorrow pass in a heartbeat, but it dwells beautifully interwoven into staggeringly glorious brightness – a story, a reality, a magnificence, a good beyond any good.” And as He whispered into my heart, I knew just as clearly that He weeps over my weeping. While He has chosen to allow this brutal path, He grieves with me and for me. His heart heaves and tears open.
In that moment, beyond all other moments, I felt the love of my Father. I could sense the thudding of His heart, the heaviness of His tears, the gripping of His arms around me as we wept together over this brutal tragic broken world where children die agonizing deaths, where beautiful, wild, intoxicatingly amazing creation lies broken. And not just sorrow in the abstract, brokenness in general, but this pain, this brokenness, this threatening death, this little blue-eyed girl at the center of so many who love her. And somehow I have now come to trust more than ever before, that though He does not raise His hand to stop what feels only like death and cruelty, it is His very love that holds back His hand. He has not turned away from me, from this ragged awful scene in Forest A Level 8 room 301 in Seattle in the year 2015 to a little girl named Allistaire and her family. He weeps with me. He does not act in the way I desperately want, not because He incapable, nor because He is cruel, but because His love and His good exceeds my comprehension, surpasses my finite flesh.
Allistaire’s Flow Cytometry results came back from her bone marrow biopsy on Tuesday. She has 5-6% leukemia in her marrow. This is the first time her marrow has not been clear since last October. The leukemia makes its vicious presence known, pressing behind her right eye. I can only imagine the infiltration the PET/CT will eventually show. We must act rapidly. Dr. Cooper comes to talk with me. What do I want to do. I told him the day before that I wanted to do Mylotarg again – it had a dramatic effect on her chloromas. But now we know it’s in her marrow too. “Is this a ‘quality of life’ conversation?” I ask him. “No, this is not a quality of life conversation. Well, maybe it is. Social work said you asked about hospice.” I tell him that, yes, in July when we first knew of the chloroma in her sinus cavity I feared Allistaire would die this summer. I honestly had little hope for the Mylotarg to be effective. But then it was. No. No. I do not want to stop trying. We have a goal. We march, rather we trudge, forward in hopes of her heart eventually recovering enough to endure a second transplant, her only hope for to cure her AML. The T-cells were ineffective to stop the progression of her disease. There is still pneumonia in her lungs. This upcoming chemo will once again suppress her marrow and wipe out her immune fighting cells, leaving her open to more infection. But what is the alternative? Doing nothing? Doing only something minimal that we know will only slightly slow impending death? I ask Dr. Cooper how may children in Allistaire’s situation have you seen make it? His shakes his head, “Maybe one.”
At lunch I sat at a restaurant reading, while Allistaire’s fantastic volunteer from Side-By-Side , Kaley, attempted to play with her at the hospital. I’m reading Sue Monk Kidd’s novel, “The Invention of Wings.” It is set on a plantation in Charleston, South Carolina in the early 1800’s. One of the slaves has just been told she will be sold off. She, the slave, is “staring at Phoebe. A daughter she’d never see again.” The words exploded pain in my heart. I gulped air, my shoulders crumbled in sobs. With head bent low, I covered my face with my hands and hot tears just spilled over, overfilling the deep well of my flesh, that dark warm cave where my spirit dwells. She is just a character. The story just a story. But she isn’t. She is as real as my shaking hands and swollen eyelids. She is countless women who have lost their child. She is the great-grandmother of people I pass on the street, in the hall, in the grocery store. Her’s is a story of loss, of overwhelming sorrow, of brutality. She is and I are bound by this unique pain of staring at child we may never see again.
Earlier in the morning I was reminded of the story of Jesus standing before the tomb of Lazarus. The Bible says, “Jesus wept.” Why? What did He weep for? He knew that Lazarus was sick, “unto death,” and he tarried. He did not intervene. He allowed Lazarus to die. And as He stood there weeping He knew that He would raise Lasurus from the dead. So what was the source of His sorrow? For what did the God of the Universe weep? I wonder if He wept because His heart broke over the brokenness of this world, over the wrenching, severing pain of sickness and death. I wonder if He wept because His heart inclined to ours and He felt in that moment the immensity of our sorrow, we finite beings broken and weeping.
In that moment I read the words of a slave woman who would never again see her daughter, I knew that it is not enough to love one another from a distance. No, and at this my whole body shook with grief, we must come in close, we must enter into the very same spaces of pain that do those we seek to love.
As a teenager, zealous with sincere love for the Lord, I knew that He asked two things of me – that I love Him above all else, and that I love others as myself. I saw that in a very direct way, a love for Him would manifest itself in love for others. My love for others would be clear evidence of my love for Him. For that is the sort of God He is. He is a God who said that to love is to lay down your life for another. I cannot claim to love God and not love others. I thought I wanted to be a doctor. I saw that Christ always met people’s tangible needs before telling them of their spiritual need for a relationship with Him. He gave them food, He bound up wounds and brought sight to the blind. I thought this – this is what I can do to love – I can bind up wounds, I can care for the sick. At some point in my college years I opted to switch to social work, seeing yet another, and perhaps more direct route to coming close to people in need. I wanted to care for the sick, the orphan, the widow, the prisoner.
But, though I did not consciously think of it this way, this is a bit of a top down approach. I was not planning on being sick. I did not want to be poor or widowed or orphaned. I did not want to be weak and in need. I did not want to be of little worth in the eyes of the world. I did not want to be someone whose sight brought pity and cringing. No, I wanted to be ever so grateful for all the good and bounty given unto me and out of this abundance, give to others. This is how I planned to love and fulfill God’s command to love others. It gave me a warm sense of satisfaction. Oh I could have pursued some money-making profession, but rather, I had chosen to be down here with the broken. I had a lovely little plan of how my life would bring glory to God and I was sure He was pleased as well.
And then came His sickle and He slashed at all my beautiful plans and my beautiful life and it scattered and bled out with me bewildered. Once upon a time, the God of heaven sent manna down to earth to be nourishment for His people. And then came Jesus, Christ, Emmanuel – God with us. God with us. God came down to dwell with man. He came down. He came down and lived on dirty roads and endured hardship and betrayal and mockery and sorrow and ultimately death. It was Christ’s hand that gave the bread, that put mud in the blind man’s eyes to give sight, His hand that touched the leprosy. This is the love of God – a God who was not content to stay far off in His glorious heights of heaven but came down low to dwell with men, that He might be not just a God of truth and beauty and power, and not even just a God of love, but see this – a God of compassion – a God who weeps. And as I read those words that bound me to that black slave woman hundreds of years ago, I thanked God for this thinnest thread, this meager connection to her pain, to coming close to her, to hearing the weeping thud of her heart. The sobs that silently racked my body were not only for Allistaire, but for seeing that the way God has asked me to love is the way that He has loved, to dwell in the same spaces of pain and reality as those who also need His comfort. Truest love cannot love from afar. It must come in close and the only real way to come close is to sit side by side just as Christ hung between two others bound to crosses.
This is the closest I’ve come to knowing what it is to share in the sufferings of Christ. The closest I’ve come to taking up my cross. It is so much less noble than I would have liked. It is gritty and brutal and the road to the horizon seems to go on and on. Who am I Lord? I am no one. I am just one girl, one person in the vast history of humanity, one of billions and billions, a vapor, a mist, a blink of the eye. And yet, as His arms encircle me, and He says No to my pleas to make it stop, I know that He is weeping with me and never have I been so confident of not just His goodness, but His love, His love. And I pray, Lord, use this one frail broken life to sit with another who weeps, that they might know my love and in turn know Your compassionate love. This is your way. I wish there were another. I wish it didn’t have to hurt so bad. But the pain speaks of the depth and breadth of the brokenness and I know you have not come only to weep with us, but also to mend, to make right, to redeem the loss, to wipe away at long last every tear. Come swiftly Lord and tarry only that more might turn and be enveloped by You.
The Death of Lazarus – John 11
11 Now a man named Lazarus was sick. He was from Bethany, the village of Mary and her sister Martha. 2 (This Mary, whose brother Lazarus now lay sick, was the same one who poured perfume on the Lord and wiped his feet with her hair.) 3 So the sisters sent word to Jesus, “Lord, the one you love is sick.”
4 When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” 5 Now Jesus loved Martha and her sister and Lazarus. 6 So when he heard that Lazarus was sick, he stayed where he was two more days, 7 and then he said to his disciples, “Let us go back to Judea.”
8 “But Rabbi,” they said, “a short while ago the Jews there tried to stone you, and yet you are going back?”
9 Jesus answered, “Are there not twelve hours of daylight? Anyone who walks in the daytime will not stumble, for they see by this world’s light. 10 It is when a person walks at night that they stumble, for they have no light.”
11 After he had said this, he went on to tell them, “Our friend Lazarus has fallen asleep; but I am going there to wake him up.”
12 His disciples replied, “Lord, if he sleeps, he will get better.” 13 Jesus had been speaking of his death, but his disciples thought he meant natural sleep.
14 So then he told them plainly, “Lazarus is dead, 15 and for your sake I am glad I was not there, so that you may believe. But let us go to him.”
16 Then Thomas (also known as Didymus[a]) said to the rest of the disciples, “Let us also go, that we may die with him.”
Jesus Comforts the Sisters of Lazarus
17 On his arrival, Jesus found that Lazarus had already been in the tomb for four days. 18 Now Bethany was less than two miles[b] from Jerusalem, 19 and many Jews had come to Martha and Mary to comfort them in the loss of their brother. 20 When Martha heard that Jesus was coming, she went out to meet him, but Mary stayed at home.
21 “Lord,” Martha said to Jesus, “if you had been here, my brother would not have died. 22 But I know that even now God will give you whatever you ask.”
23 Jesus said to her, “Your brother will rise again.”
24 Martha answered, “I know he will rise again in the resurrection at the last day.”
25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”
27 “Yes, Lord,” she replied, “I believe that you are the Messiah, the Son of God, who is to come into the world.”
28 After she had said this, she went back and called her sister Mary aside. “The Teacher is here,” she said, “and is asking for you.” 29 When Mary heard this, she got up quickly and went to him. 30 Now Jesus had not yet entered the village, but was still at the place where Martha had met him. 31 When the Jews who had been with Mary in the house, comforting her, noticed how quickly she got up and went out, they followed her, supposing she was going to the tomb to mourn there.
32 When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.”
33 When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. 34 “Where have you laid him?” he asked.
“Come and see, Lord,” they replied.
35 Jesus wept.
36 Then the Jews said, “See how he loved him!”
37 But some of them said, “Could not he who opened the eyes of the blind man have kept this man from dying?”
Jesus Raises Lazarus From the Dead
38 Jesus, once more deeply moved, came to the tomb. It was a cave with a stone laid across the entrance. 39 “Take away the stone,” he said.
“But, Lord,” said Martha, the sister of the dead man, “by this time there is a bad odor, for he has been there four days.”
40 Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”
41 So they took away the stone. Then Jesus looked up and said, “Father, I thank you that you have heard me. 42 I knew that you always hear me, but I said this for the benefit of the people standing here, that they may believe that you sent me.”
43 When he had said this, Jesus called in a loud voice, “Lazarus, come out!” 44 The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face.
Jesus said to them, “Take off the grave clothes and let him go.”