I can’t tell you what it’s like to lose your child. I simply don’t know. But I can tell you what it’s like to walk through this world with your child’s life ever, ever hanging by a thread, ever threatened, the wolves snarling, the glint of teeth. I see the girl in her soccer uniform with her mom and little sister as I descend the escalator in Target. My legs weak and muscles quiver, drowning in some sort of chemical sorrow, trying to catch their breath. Such beautiful normal life. People out living their extraordinary, ordinary lives and I feel perpetually trapped on the other side of a glass wall. The little blonde haired girl sucking her thumb in the coffee shop, wearing the same tights I once bought for Allistaire, tights not too small to wear, just irrelevant in the world of the hospital. I walk through the clothing section for little girls, barbs pierce my flesh. I buy her clothes because clothes mean you are alive, you have a life. But I don’t buy a size up with a future in mind, even clothes that acknowledge the change of season only serve to declare her plight, a life lived inside where temperatures never change, wind never blows nor rain falls. I see people out in their yards raking, mowing, digging, flowers bursting and I envy, I envy. I long to be on knees, hands in dirt, pulling weeds, clearing the dead debris of winter and sinking flowers into soil. My life is lived in strange parallel, at moments seeming to cross over but ever tied to a rope threatening to pull me down, pull me under.
I have routines that on the surface create the ruse that there is normalcy, but these days are only normal because they repeat without seeming end. Weekends are strangely hard. They are a gift because they are a chance to be out of the hospital while my parents stay with Allistaire and I get two nights of unbroken sleep. But they are spent alone. Alone I go to the movie. Alone I eat at a restaurant. And I have chosen this. There are many who would join me but I have preferred to be alone because I so weary of the constant barrage of human interaction every day, all day and night at the hospital. I am desperate to flee from it and yet, I don’t want to be alone. I want to be with my family. I want to be doing ordinary things like waking up together in the morning, making breakfast, doing laundry, going to the grocery store, sitting in my chair by the window, sweeping up the incessant needles from the fir tree, making dinner. But I am cut off from these ordinary pleasures and so I pass through spaces, silent, appearing to be apart of the world of the living, but like some agonizing spirit, dwelling in the space between.
My mind feels gripped in a vice, pressure now intensifying, now releasing but ever-present. The numbers are relentless, my brain analyzing them ceaselessly, turning them over this way and that, holding them next to sets of numbers from other days, trying, trying to make sense of it. What am I seeing? What do they tell me? I look at her and I see bright thriving jubilant life that could and would flourish all the more if we could just escape the grip of this place. We have officially passed the mark of 365 days lived within this hospital, one year of her life spent within the confines of these walls. Twenty percent of her life has been lived constrained to Seattle Children’s Hospital. Sixty-five percent of her life has been spent fighting for her very life. I weary. Oh how I weary and yearn with panting desperation at times to just get away, get out, flee. But there is no escaping, there is no breaking over the walls in the night and running and running until you can’t anymore. The only way out is to be released.
Last week the doctors had a planning meeting. On that day, Allistaire’s BNP was a beautiful wee little 500 or so and her kidney function numbers, her BUN and creatinine were gorgeous, proclaiming happy kidneys profuse with blood. Most of last week was an ongoing struggle with her being nauseous, throwing up consistently once or twice a day. Sometimes she would just be nauseous in the morning and throw up once, having no issues the rest of the day. Some days she would eat well, getting in all her needed calories and fluid, just to throw up ten minutes after going to bed. I felt under tremendous pressure, knowing that nausea and lack of appetite can be signs of heart failure. Helping her get in the necessary calories and fluids is totally my realm of responsibility and I was desperate for her to demonstrate that she could do it. Yet each time she cried out in terror of impending throw up, clutching the little gray basin in front of her chest and out would come hours of effort, I felt such overwhelming defeat. Each time she threw up it meant we were behind on calories, behind on fluids and with far less time to get them in before the end of the day. The moment she finished throwing up I had to put milk or juice and food in front of her again, pushing, pushing her to consume.
There are so many layers of reasons she would struggle to eat. Three years of chemotherapy has created plenty of negative associations with eating. Incredible gut pain from typhlitus has made her on much higher alert in terms of stomach pain. Her entire system of stomach and intestines were at complete rest for nearly two months during which time she was on three types of hard-core broad spectrum antibiotics. Everything is slow and any pain, whether from gas, need to burp or nausea all gets mixed up in her mind and triggers her to throw up. Her gag reflex has intensified dramatically. It has all led to an all day long effort to get in food and drink with repeated defeats. I don’t know if there is anything more core for a mother than the need to feed her child. I feel it throughout my flesh and far beyond the workings of my mind, this desperate need to provide her nourishment and all the while fear of how it will be interpreted by the doctors. Thankfully, both the PICU attending and our ICU Continuity Care doctor, affirmed that Allistaire has many reasons to struggle with eating and that they were not overly concerned about it being directly tied to her heart function, given how encouraging she looked clinically and with all her labs. I finally felt some relief, having been given permission by the doctors to let down my guard a little.
I was encouraged to, “look at the trajectory.” By all other measures she was doing great. Her BNP was bouncing around in the four to five hundreds and all her other labs were good, especially once they transitioned her from IV Lasix to PO (“Per Os” in latin which means “by mouth”). The thing is though, a slight bump of the numbers in the wrong direction sets you on high alert, the ringing fear rising. Yeah it’s a little blip but it could be the beginning of a frightful trend. And so it has been, her BNP slowly rising from that beautiful low, each day a little higher and today 861. Her BUN too slowly rising from a happy 21 to 31 today. But the mind bending thing is, she just looks so great. She looks great! She’s happy, she is playful and less nauseous, rarely throwing up now. Her average heart rate has gone up but at least some of this is due to the fact that she is far more active these days. Ashlei, our social worker, saw her Friday after a week and a half gone, and exclaimed that she just looks so good, far more her normal self. It’s true, her cheeks are pink and she has a delightfulness to her being. It is a hard contrast to these numbers trending in the wrong direction.
Are we about to be dragged down again under those dark suffocating waves? Was this just some fantastic lull, a beautiful blip? May it not be. Her echocardiogram is scheduled for tomorrow morning. I know to expect her BNP to be high tomorrow as it has been each time she gets a red blood transfusion, which she got this morning. We’ll see what her BUN and creatinine are. I feel terror, terror. What will I know tomorrow night? How will the world tilt and spin in these next 24 hours? I don’t know what to wear. It sounds absolutely absurd, but it’s supposed to be sunny and 66 degrees but some how in some stupid way I feel distressed to wear cheery clothes that may be paired with weary tear strewn face. I thought we might order Pagliacci’s for dinner tomorrow. It’s always fitting, whether in sorrow or rejoicing, but which will it be tomorrow?
For so long I have been tossed this way and that, flesh shuddering against stone walls, the force bruising already bruised body again and again. I am battered, tender and any new hit hurts deep and hurts sharp. Like Allistaire’s chemo weary heart, so deeply wounded from relentless assault, so is my heart, my being thrown against the rocks so many times. Am I overly dramatic? Perhaps. Am I asking for pity? No. But I find the tears so close to the surface on so many days. It feels easier to quarantine my life to that of the hospital world rather than having to confront the extravagance of other’s ordinary life, a life for which I am ravenous. I had allowed my mind to wander with hope for escape. I told Allistaire there were daffodils and tulips blooming outside. I have yearned with a keen intensity for her to be outside. I am desperate to see her out on a playground with shoes on, not slippers. The hoped for plan was that Allistaire would be off of Milrinone completely sometime this week. She has weaned down .1 every three days or so and is now, as of Friday afternoon, at .1. All she had to do was finish these last few steps, spend 24 hours in the PICU with no Milrinone and then transition upstairs to the cancer unit for a week for monitoring and getting her at the right dose on a few meds. Then, then we would be free. We would be released like birds too long in a small cage. I could taste the beautiful sweet hope and see its translucent yellow ethereal light.
Like some triggered trap snapped closed, these numbers have shut out such lovely hopes. Perhaps I should not have hoped. Perhaps I should have kept those black blinders on my eyes, a beast of burden commanded to look only at the path immediately before you, be not distracted, keep your view small. I have not figured out how to make this hurt less. The only solution seems to be to be less tied to her, to loosen my grip and gain some distance, watching as if a movie, a story of some other life. But I can not. I can not. I can not want less to see her live. And even as I feel such ripping soaring hope for her to live, I fear too what sort of life she might have before her. I want her to live that she might be ravaged all over again by transplant. Who might she be on the other side of that? I see the ravages other children have endured to keep their life, ravages that keep devouring more. But wouldn’t I want a broken Allistaire rather than no Allistaire? I would take her broken in a heart beat over having her no more. But is this just my selfish wish, for my own good? I look at her bright, cheerful face, her endless pleas to play hide-and-seek, her wiggly joy and I think, no, it is not just my wish. How could I walk away from this bright spark? How could I let up for one moment attempting to keep that flame fueled with life?
I am lulled by the cycle repeated over and over and yet shocked that it is once again Sunday afternoon and I am preparing for another week in the hospital. Today marks her 80th inpatient day of this stay. For seventy-two days, she has been confined to the PICU. And here we are, on the cusp of another week and another echo. The snow falls, flake by flake, finally amassing to something visible only when millions have fallen, though each flake so beautifully unique, intricate, designed. The season passes and returns again. The snow falls and is eventually blanketed by another layer, and another. On and on it goes, year after year, individual snowflakes bound one to another and pressed down, compressing under the weight above of snowflakes past and snowfall present. With imperceptible motion, gravity pulls at the enormity of the glacier, drawing it down, gouging sheer rock from its place of such seeming eternity. And one day you stand in that magnificent space, that airy immensity of openness where once there was rock and now there the indescribable joy and feeling of exhilaration, of peace silently emanating from an emptiness between ridges of mountain, bright blue lake before you and green sweeps of valley rising all around, blankets of wild flowers, tender and tenacious.
What is the Lord up to? I cannot tell you. I stand in the storm, snow falling all around, each individual flake unique and perfectly designed and joining the masses to become indistinguishable. I may never see with these earthly eyes, that breathtaking mountain valley, blue lake reflecting blue sky. The Lord’s ways are not my ways. His story, His creation spans eternity and I and this story of Allistaire are but a breath, but a passing vapor, not insignificant but designed, intricate, unique. I don’t know what to pray, my heart too weary to muster words, but I fall at His feet. I am so very weak Lord, so bruised and tender, tired, so tired. Why so downcast Oh my soul? Why so downcast? Put your hope in God, put your hope in God. He is my only hope. He is my anchor in this storm, this thrashing back and forth, this constant buffeting of wind, I am tied to Him, in Him.