My sweet brother-in-law, Jens, Sten’s youngest brother, died on Saturday skiing with their older brother, Peder, and two friends. A relatively small avalanche swept him over a cliff and was dead when Peder found him a minute later. Here are the reports: Bozeman Daily Chronicle Montana Avalanche Report
Here is a recent video account of the accident by Gallatin National Forest Avalanche Center
I flew back to Bozeman yesterday and will be here for the week. The memorial service for Jens will be this Saturday, April 18th at 3pm at Journey Church. I hope to get more details out soon for those that live in the area and want to help.
Below is a post I started a week ago. I will leave it for you as is. It is about needing to grieve, about needing to be given permission to let loss be loss, weighty, aching loss. Whether in sudden death or long tortuous demise, the loss is real and we must give room and allow the dark to be felt, the ravaging pain to sear. There is hope, there is beauty but please, don’t cut short deep cavernous grief. It is in truth, a strange accounting, a survey of all that was good, that was treasured and dear. To cut that off, to force its dilution is in fact requiring one to forgo assessing the bounty. Let the sorrow come, the tears flow and flow, the gut ache, let every joy past be remembered and every future, earthly joy lost, be mourned.
My fingers shake this morning as I call the hospital from my kitchen counter in Bozeman. Once again I fear the numbers. With an adjustment of meds, Allistaire’s heart has actually once again improved after a drop two weeks ago. Two Mondays ago, her Ejection Fraction dropped to 23 (previously 35) and so she was put back on .3 of Milrinone, the Isosorbidedinitrate-Hydralazine was dropped and a very low dose of Carvedilol was added. The idea is to keep her at .3 for a while and maximize her oral cardiac meds. Her Ejection Fraction last Monday was 34. She is set to get another echo this morning and today her BNP is 369, a beautifully low number. So I am hopeful that her heart may continue to slowly improve.
What has my hands trembling are her dropping blood counts. We are mere days from the end of this 28-day cycle of chemo and yet Allistaire’s ANC today is 18. It has continuously dropped over the month, and this in the face of a chemo that is not supposed to significantly suppress blood counts. The other concern is her rising Uric Acid and Phosphorous numbers which can be a sign of tumor lysis, specifically leukemia. A flow cytometry test was done on her peripheral blood last week looking for leukemia. Thankfully the test came back zero percent leukemia. So the question is, are these dropping blood counts from a severely weekend marrow that collapses at the slightest insult and the electrolyte numbers askew from the result of other meds? Or are these all evidences of a marrow packed with leukemia cells, not allowing healthy cells to grow. We will soon know. On Tuesday she is scheduled to get her first bone marrow test since December. The cardiologist feels that the improvement in her heart function makes the risk of anesthesia reasonable. The procedure will be done in the OR with the aid of the cardiac anesthesia team because the risk is still greater than it normally would be. Depending on the timing, we should hear results as early as Wednesday evening. If Allistaire handles the anesthesia well, a PET/CT will also be scheduled.
I already had a plane ticket to fly out here for this coming Wednesday night, not having the bone marrow test yet on the radar. Once it was scheduled, I realized that this could be a wonderful week with good news, or a devastating one. If Allistaire’s marrow has a significant amount of cancer, at most we might have one last round of chemo to try. Or we may have nothing left. Despite all of this, she herself is full of joy and life and delight with long luxurious lashes and the softest light brown fuzzy hair. We have been up on the cancer unit for a week, enjoying a fantastic view and the joy of familiar loving faces. She has not been in pain and is eating okay, throwing up just every now and then. My wonderful parents will be with her for the week. I am blessed to have their amazing help.
And then without warning, without the slightest hint of foreshadowing, a sickle came hard and fast and swept away the life of Jensy. Who can understand these woes? Lord we call out to you even as we know it is You who determines our every single day, from first to last. I find myself once again standing with Peter. Many of Christ’s disciples and followers walked away because of His, “hard teaching.” Jesus asks Peter if he too will leave. Peter responds, “Lord, to whom shall we go?” The ways of the Lord are past understanding, sometimes all seems just brutal. But to whom shall we go? To what truths will we cling? Some are not necessarily content, but more content to live with the unanswerable, because much is unanswerable. Yet, as for me, I stand with Peter who went on to say, “You have the words of eternal life. We have come to believe and to know that you are the Holy One of God.” For Christ’s words are spoken to us all. It is true, there is an element of leaping to faith, to my faith. There is a choosing to trust in an unseen, an unprovable. But my faith is not blind, it is a faith with eyes wide and roving, seeking, alert and my eyes have seen the Lord and so I walk trembling, but fixed on Christ.
Hebrews 11:1-3 & 13-16
“Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for. By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible…All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. People who say such things show that they are looking for a country of their own. If they had been thinking of the country they had left, they would have had opportunity to return. Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.”
I rejoice that Jens is with the Lord in that heavenly country, and one day we will be reunited with him and see our Lord with unveiled face.
Post started last week:
I eye the stairs with envy, with desire. They are swept, brushed clear of the tens of thousands of millions of pink petals, fallen like decadent snow from the cherry trees that frame the stairwell. Time and rain and thousands of feet turned them into brown decay, so quickly replacing their fleeting soft tender beauty. To stand in the cold spring air and sweep, step after step, cherishing and loving the temporal beauty, not condemning it for failing to live on, nor accepting its smeared muck as beauty any longer, pure pleasure, contented joy. Joy for the fleeting beauty and acceptance of its passing.
Allistaire’s body moves slowly across the bath tub floor, delighting in the strange sensation of buoyancy, so long missed in the PICU with nothing but wee plastic baby tubs in which to bathe. Tears prick my eyes and ever the simultaneous push and pull to give in to them and hold them back. Sometimes I yearn to just be allowed to cry and cry and cry. Cry without end. Weep and cry out with face distorted by sorrow without caring who cares or who sees. It comes to me that I would choose Allistaire again, even if I knew it meant this, all of this. I would choose her again if such a thing were mine to choose. I take in her small body with the quarter-inch of light brown fuzz, blonde along the hairline, her lashes long and dark, the scars and the white tubes protruding from her chest draped above the water and wrapped in Press ‘N’ Seal meant for left overs in the fridge, not life lines. I wish to be left to cry without having to restrain, without feeling the responsibility to balance with gratitude, without having to consider another’s assessment of me, of my grief. I don’t want to have to explain, to tell you the countless tales that have formed this mountain, this deep pit of grief. I don’t want to need to substantiate my rightful place to feel my flesh ripped off.
But there it is, you see she is still alive and I know I have much to be thankful for but it feels like unless I stand before a grave, I am compelled to look for the light, the life, the joy, as though I have no right to see the darkness, to call it black. And I do look for light and life and joy and I want to, but sometimes I just want to be let alone and wail in the night and weep as I fold laundry in the hospital laundry room where you have to fear your clothes stolen if you don’t get there right when your load is done and your must use the provided little capsules of detergent. You are not at liberty to use your own detergent. I want to pound the bed at Ron Don that feels like sleeping on a precipice on the far edge and rolling down a hill into the center. My very sleep blares how everything feels wrong. Everything seems askew and out-of-place and I weary of it. I weary.
Sunday was a strangely hard day despite my attempts to make it fun for Allistaire complete with a cute dress, easter eggs filled with candy and eggs hidden around the Unit for a wee hunt. Oh she was happy with it and only longed for more eggs to find and the nurses rejoiced to see a child out of bed, walking around in clothes from another world, taking delight in an act millions of children have done throughout childhood. But somehow I could not muster the joy I so wanted to have. All I could feel was loss, was sorrow, was agitation. I found myself being short with Allistaire, short with Sten. I had leveled an emphatic “NO” to his idea to look into VRBO (Vacation Rental By Owner) as an option for our lodging for our upcoming trip at the end of the month. Without realizing it, I hastily rejected an idea that screamed insecure to me, far preferring the normalcy and seeming trustworthiness of a reservation at a hotel where I could read through nearly a thousand reviews if I chose.
It took time and apologies and challenging slogging conversation to realize that a culmination of individual saddnesses were all piling one on top of another, threatening like an avalanche to sweep me off my feet. I had the distinct feeling of rage at Allistaire’s leads that insist on alarming on the monitor at her every movement. I severely lacked patience when it came to another meal time, another two plus hour stint in which I ceaselessly admonished her to take a sip of her juice and put a bite in her mouth. When I finally pulled back, I saw my heart swapped with sadness to be in the hospital for yet another holiday, another Easter where eggs lay at nurses stations and nestled in curves of brightly colored tape to label IV pumps rather than with family around a meal and out in the grass searching for those eggs. My heart already sagged with the knowledge that in a mere day, Sten would be gone again, not to return again for another month. Separated again. Alone in the fray again. Eighty days in the PICU, nearly ninety in the hospital, with no end in sight, no guarantee of outcome.
Out of the corner of my eye, as we turned to the right from her room rather than our usual left, I saw the room down the hall flooded with lights, countless bodies in teal scrubs and masks. We were instructed to cut short our normal loop, forgoing the last segment, first because they were putting in a line, then more activity, then a code. Even at five in the morning when I left to exercise, the room was a blaze with light. And then, later in the day, between walks, the room had simply gone dormant. I recalled that the curtains had finally been drawn and then it was just empty. Empty. No more the lone figure on the outskirts with the orange Caregiver badge. Empty. I asked the nurse who I knew could not answer my question, was not allowed to tell me the truth, I asked her if that child died. She looked at me slow and asked, “Are they still there?” No. No. The room is empty. And I am just to keep walking, walking my child around this endless loop while rooms fill and empty, fill and empty and we, we languish ever walking loops. And we are to rejoice, because we walk, we walk.
The caustic fear has diluted after countless storms and rain that washes and washes, the fear ever present but saturated in endless details and hours and days and nights. As I walked into the hospital that Sunday evening, light staying longer, bright fierce green of new leaf a delicate airy shawl around trunks and branches, I thought, “the worst that can happen is that she dies.” A thought so stark and naked and unadorned and assaulting and simple and brutal and calming. A call on my phone from the nurse that Dr. Rosenberg, the attending oncologist, is looking for me, wants to talk to me. Yes, I’ll be right up, I’m on my way in, I respond. And suddenly it occurs to me that it can’t be good if she is calling, if she wants to see me. We head to the quiet room where things anything but quiet are discussed. She tells me Allistaire’s Uric Acid and Phosphorus are on the rise. This is evidence of possible tumor lysis, of cancer cells breaking open and spilling their contents into the blood. This is the unique mark of leukemia cells to be specific. She has ordered a Flow Cytometry test done on Allistaire’s peripheral blood to look for cancer cells. It won’t be definitive, not nearly as telling as bone marrow test would be, but all we can do at this point.
We talk of death. We talk of hospice, a word so forbidden, so taboo, you fear even uttering it as though doing so will bring it into a living reality, a throbbing, visceral death. I cry out that I do not know how to let her die. But strange peace has seeped in, silent, filling the crevices, comforting and rocking my heart, telling me that I do not need to know, for no one does. No one who faces this loss of child knows how to face it. Peace tells me that my feet must simply walk and hands move, heart beats and I eyes open and close. My body must live out whatever days and hours may come. My heart will follow along, pulled by the body, inseparable but living out its own actions, its own bleeding, its own screaming and silence and smiles seemingly misplaced but never truer. And I knew too, the Lord will lead my heart. He will hold it tender even as it bruises and threatens to lose all its life blood. Peace seeped in, like light imperceptible which ever so slowly turns darkness to day. The slightest, barest hint of light, the sort of light you look at straight on and cannot see, light not seen by eyes, but by that essence of ourselves, that part of ourselves that knows without our knowing how. She told me that parents who talk to their dying child about the reality of their dying rarely regret doing so. And as her words filled the air from her numerous experiences with patients dying, I saw my one child’s face, the one with whom I have had far more occasions to talk of death with and of the life to come, the hope for a new body that can never again die – more occasions than most children will ever have with their parents forced to face the fleeting beauty of our lives.
It was actually Monday evening that I talked with Dr. Rosenberg. For on Sunday evening I was panicked with fear, no, with terror. Terror. With Allistaire’s rising BNP, and the next day’s impending echocardiogram, my flesh was on high alert, ringing fear of realities the next day would hold. I have bit by bit come to see in prayer that I need not shield myself from God. I need not cloak my nakedness, my ugly, unlovely flaws, my tender, vulnerable, finite flesh, so desperately weak. I am learning to not simply say that I need Him but to confess the details of my fears, my fatigue, my sorrow, my anger, my confusion, my desperate hopes. I confess not as though sin, but of speaking out truth, of yielding the details into His care. As the clock declared it morning on yet another Monday, I left the hospital in darkness to go exercise, robins sang, calling out one to another over and over, knowing somehow that the earth was still revolving, turning inexplicably ever again toward light despite none being visible. Like the robins, whose calls declare such expectant hope like no other sound I know, I found tender, thriving sprouts of peace rising up, invisible but present, pressing their form into my heart without force and yet causing my heart to yield, to give way. It was not hope that all would turn out well with Allistaire, but rather peace, peace in the face of whatever outcome.
When Dr. Hong finally arrived to convey the results of the echo, heat threaded up my back and neck and a lump formed in my throat as she told me her heart was worse, her ejection fraction down to 23 (from 35 two weeks before). As I suspected, that forward steady march toward healing was not to be. Her labs had been trending in the wrong direction despite her continuing to look great clinically. She still had energy and appetite and her profusion seemed ample. She said that she would not adjust Allistaire’s Milrinone yet but keep it at .1 until she could discuss things with the rest of the Heart Failure team. I went to Magnuson Park to sit in the sun surrounded by fresh air and light and blue water