A single drop of water incomprehensibly dropped into water and trills across the empty space. An echoing quiet, yet deceiving. Like wind constantly buffeting the mouth of a stone cave I realize I hear a constant hum. The ventilation system. I am brought back to those rooms 100, 200, 300, 400, 500 nights. Every night constant sounds, a little fridge ticking on and off, the beeps of the heart rate monitor, the alarm of air in the line, the regular clicking of the syringe on the IV pump. And always, that constant hum of ventilation, strangely bringing comfort, making space for sleep, a buffer against the monotony and the terror of cancer treatment and my little girl laying small in that mechanical bed, rising and falling of her chest. I tried to curl myself into sleep, to pretend that pullout couch really is a bed, knowing that tears can slice into sleep and always, always there are the labs that will await me in the morning.
When I am an old woman, will I know what to do with all this pain? Will I finally have come to some wisdom, some way of soaking it up or shedding it off? We went to the Blackhills and to the Badlands. Over and over the weathered faces of Native Americans stared back at me, wrinkles lay in deep folds across eyelids and cheeks bones, faces that seemed to know, to know sorrows I don’t even have images for, only a deep guttural wailing that binds my broken heart to theirs. Did they ever discover how to bear up under the weight of loss, of stripping and breaking, their beings required to take up less and less space in a vast land that once was theirs?
All of a sudden, in what seemed a common moment, there comes piercing in, a blade that cuts afresh, that causes the blood to ooze and bead. Trekking out into the complex array of layers stacked, striations of brown and talc and orange, we explored the Badlands, a place of ever-changing, evolving erosion, a land of perpetual loss. Over the course of days, our skin unknowingly soaked in the sun and we took on burn and tan. As Solveig noted the darkening of her arms the conversation turned to her “olive” skin that she must have gotten from her dad, for I am an Irish lass, covered in freckles and prone to burning. And Allistaire? Well, she had been declared “white on white” by her first oncologist, this apparently being considered a good thing, indicative of a greater likelihood of having a bone-marrow match should there ever be need.
And just like that, there it was. The sudden knowing of a man who I had so loved, loved early and loved long. His arms turned olive in the summer, the hair in turn changing to blonde. I would bring his wrists to my cheek and feel the softness there and admire this warming of color brought by heat and light. And the blade twists and I want to gag. What do I do with all this pain? Where do I put these memories, these small intimacies, these wee jewels of love of knowing another? How now do I look at them, how ought I to categorize them?
Tonight it was the grits. Leaving work feeling deflated, feeling that in spite of my efforts, I had yet again tripped up and found myself in a mire, my heart dragged. To the grocery store we went. I can always buy milk but beyond that the question of dinner loomed, so deafeningly complex, so much to consider. What can I cook that won’t take too long, won’t make too much of a mess, won’t be an unhealthy mess of chemicals from pre-packaged easy prep foods, and won’t be pricey. Breakfast dinner, that’s what I would do, an old standby from childhood and always surprisingly satisfying. As we checked out I told Solveig to go get a different box of graham crackers as this one was bashed in and I thought this might be a sign of crumbled crackers. “Still poison,” the boy behind me in line mutters under his breath.
I can’t seem to catch a break. I’m fairly aware of poison. Pretty keenly aware that my child died of cancer and I don’t know why. I’m the one that had to watch her gray lips move like a dying fish on the shore after her chest ceased to rise. “Do you not think I want to avoid poison with every fiber of my being?” I want to bellow back. But I have another daughter, see. She’s the one the crackers are for, to bring her and her school friends joy to celebrate the end of another school year with a sleepover and s’mores.
At home we sit quiet, bellies filling, finding satiation in our sausage, eggs, toast and grits. Grits. We haven’t had those in a long time, sort of forget about ’em. They are a food representative of my childhood. Daughter of two native Georgians, pork tenderloin, fried eggs, biscuits and grits have been core to my growing up. It brings an odd joy to watch my own child, far from the south, relishing grits. Shrimp and grits come to mind and prompts me to dig up an old recipe I vaguely remember making once.
And just like that, there it is. The memory floods back. Still early in my role as wife, trying to bring joy to my husband by preparing tasty, healthy food, I would peruse the Cooking Light Annual Recipes books for new tasty dishes to try. There it was, the green salad with avocado and grape tomatoes and southern style shrimp and grits. 2005 the spine of the book tells me. Just four years in to what would end up being a 15 year marriage. I try to remember those days. Try to squint and see, who was that girl just turned 30, and that boy early in his career? Were we happy then? What were our woes? How were we already laying down patterns of relating that would burn and cut and blind us to one another.
I wish I could go back. Inhabit her flesh. See the world through wiser eyes and try again. Could I make the ending turn out differently? How much was within my grasp and what never was?
But I can’t. I can’t go back and I can’t change a thing. And now I must simply learn to live with this living breathing loss. I remember talking to Marla. Marla is the director of Side-by-Side, the ministry that pairs volunteers with sick kids at Seattle Children’s. Allistaire’s own Side-by-Side volunteer, Kaley, was one of her dearest friends. I never knew how she did it. Kaley could play with Allistaire for three hours straight and come away with nails garishly painted a whole array of colors. Her stamina for princesses and sick dolphins or sea horses or any other creature in desperate need of magical potion to make them well, never flagged. Marla was a key part of this equally magic pairing of Kaley with Allistaire. And then her own love fell ill to cancer. Her husband died in less than a year from a brain tumor.
“I’m learning to carry it,” she said over the phone when I called her about a Bozeman family who might need to head to Seattle Children’s.
I’m learning to carry it. Her words echo in my mind.
You would think that Allistaire’s death would be both pinnacle and end of the enormous, unrelenting strain. Somehow nothing could ever compare to that degree of blinding, burning pain of being severed from my little beloved, of having to witness the incomprehensible, an utterly still child who had once been unable to not dance at the slightest hint of music. And yet, like strata laid down over eons, like those hills brown and talc and orange, the sorrow cements layer upon layer, an ever mounting enormity of pain, each era marked in color and grit and brevity or length by the sorrows at hand.
And erosion? Is it gift? Is the wearing down of the layers over time as the rain bears down in heavy sheets, and the wind whips away fragments of rock, does this loss of loss equal gain, get assigned the tag of “good?” It doesn’t feel that way. I already struggle to remember her voice, I strain to catch the look in her eye. I come back again and again to a handful of the same memories, desperate to not lose more of her. I see her in the early hours of the mornings at Ron Don. I would wake her up to use the bathroom. She might look like a baby girl with her bald head, but she was a 6-year-old girl, fully aware that she should be beyond diapers. And yet, for the love of her kidneys, we were always forcing down massive fluids which made it hard to make it through the night dry. So I would wake her up at 5 when I got up. She would sit on the toilet, her little legs dangling, panties encircled at her ankles. Panties with purple Bat-Girl symbols or blue panties with the yellow and red emblazoned W of Wonder Woman. Sometimes, right there on the floor in front of her, I would hug her as she peed. Then off she would go, back to bed for a few more hours.
I see her over and over, facing away from me as she headed into her room. Little round bald head, jammy shirt, her little bottom in panties and skinny legs on tip-toe. She walked tip-toe all the time despite my constant admonitions to walk on the soles of her feet. This “heel-drop” was a vestige of so many months living in a hospital, hours upon hours sitting and laying in bed, heels back causing the Achilles to tighten over time. I see her tip-toeing back to bed, her little tubies swinging side to side. How I long somehow to transport through time and greet her in the dim light of morning.
I don’t want to lose what brings the pain. I close my eyes and remember what it was to kiss him on the cheek just at that place where his razor went no higher and I could glimpse faint peach fuzz. The memory is just there. I don’t conjure it up, it simply rises to the surface unexpected, uninvited. And so are all my days, pricked with scores of cuts, memories breaking through the surface of the moment. Blood bright along the cut.
I look back at those weathered faces, at the eyes unblinking. Did they ever learn to carry the pain?
The Badlands have their beauty. The shear accumulation of time, layer upon layer was necessary. So too is the cutting away, the erosion that lays bear the history of that land. Sometimes my life feels like a wasteland. I wonder at the landscape that will one day be seen.
The rain has passed for the moment, the sky over the valley lightening up. The earth breathes deep the moisture, Rocky Creek overflowing its banks, swelling out into the fields, Bridger Creek tumbling brown and swift down the hill. A few patches of bright white linger along the edges of the trees, trees that know to grow near water, a line of aspens through the meadow. Deer everywhere as though spontaneous generation were possible, they appear out of nowhere. The wild prehistoric call of Sandhill Cranes echo through the hills and the silent mountain blue birds flit their scraps of sky. It is April. At long, long last April has come and with the end of the month, Spring. It is Montana after all, but even for us, even for the creatures, the winter has seemed unending. The animals are ever face down in the grass, and we, our faces turn up to the sun.
I hurled the car seat into the back of the Suburban, surprising myself with the force. The garage has been an agitant for years, a silent declaration of my absence, both in body and in mind. It was on my list, clean up the garage, go through the junk, discard, discard what no longer pertains to this life. There sat the car seat, a bulk of ugly plastic once justified by a young nephew who has now grown too large for it. Knowing no one will take a used car seat and appalled at the thought of its plastic leaching into the earth for eons, I was elated with flat face that for two weeks Target was collecting car seats for recycling.
I stood there a bit stunned at the flex of my muscles and the explosion of force that had succeeded at the car seat sailing into the back of the car, so hard it ricocheted backwards. Do you know how many hours that car seat held the flesh of my sweet girl with its five point harness? How many water bottles of fluid had sat in that cup holder demanding her consumption, 40 ounces every single day? How many times did I look over my right shoulder to see her face with the backdrop of that car seat? Somehow that car seat had embodied my greatest fear, a horror beyond all horrors – driving home, driving away from Seattle with a car seat empty. I had seen it happen. All of the cells of my body screamed in desperation that would never be me, that I would never ever have to know that fundamental ripping of my heart. And then it came to pass. On Mother’s Day 2016, I sat alone in the Suburban, having packed up our apartment in Ronald McDonald house, I had to will myself out of the parking lot, ever aware of the black emptiness of that car seat.
It is April. The 11th marked three years since Jens died. Tomorrow marks two years since Allistaire died. It is a hard month, the events of April tied tight to my heart, moments that sear in the mind, never ever to be forgotten. The sound of Sten’s sobs on the phone as I stood in the Cardiac ICU visiting my friend Christi, fearing it was Solveig and then my mind reeling to comprehend that it was Jens. I only remember I kept yelling “NO!” and the security guard had to inquire if I was okay.
With Allistaire I plod, walking so, so slow through the days, remembering each with clarity, the outlines of moments crisp, moments that separated years of action with limitless “last times.” The tube of fancy hand lotion sits in my bedside table, retrieved weeks later realizing it had been tested out, “the last time” Allistaire and I ever went to Anthropologie together. The last dinner she ever ate, the last clinic visit, the last time in the toy store, the last time of taking pills, the last time we ever heard her voice, the last time I ever held her as she was eventually in so much pain I couldn’t even gather her in my arms, the last night I ever spent by her side, her last breaths, the last beating of her heart, the strangest stillness I have ever know. The pictures and videos of those last weeks and days are still on my phone. I can’t take them off and I can’t bring myself to look at them. There is no one who will sit by my side and watch these horrors with me, be witness to them with me. I feel so radically alone.
And this is the Lord’s answer, “Jai, Jai, you are not alone”. For in the moment I wrote the sentence above, I let release bellowing screams of pain, horrible sounds ripping the air, thinking I was alone with no one to hear, no one to be horrified at the ragged sounds coming from my gut. And then a soft sound that made me pause and moments later the quiet sound of a car driving slowly out of my driveway. It was Alison, Alison who quietly left me daffodils and a card with a bright, chubby, fierce mountain blue bird. Ever since my days in college, I have always bought myself daffodils, the surest sign of spring. And here they were, an elegant bunch of buttery yellows, hints of orange and bright singing yellow. And a mountain blue bird card, our chosen spirit animal Allistaire due to their abundant presence in her dying days, a staggering blue echoing her eyes and the vast sky above.
There was Marilyn and Dave who I just happened to see this morning at Target as I was dropping off the car seat; Marilyn who had been praying for an opportunity to greet me in remembrance of this hard anniversary. There is the card from Jim and the text from Heather. And there are the countless other times friends and family have inquired of my heart, my life. There is no one, save but one, who will ever really know the heartbreaking terror of those last days, hours and moments, but I am surrounded by many who have kindly, gently, faithfully reflected the loving and gracious face of God to me.
Most importantly, the Lord remains faithful. April is a good month to die. If one is going to die, and we all must at some point, April seems most fitting. April, it is a yellow month, a month of light, and not just light, but light after such a long, long season of darkness. April is the sure breaking of winter, the pressing of life up and out from the cloak of dark and cold into newness, into green, into unfurling, into vigor and beauty and an exhale of giddy surprised joy – the shock that life really does overcome death, that light will prevail over darkness. April aides my hope in resurrection and redemption. I see it with my eyes, my ears take in the sounds, my skin feels the warmth, the light overwhelms. The season of death has broken, life will not be stopped. And imagine, this is just a hint, the skimmest outline, a mere shade of the glory to come.
So I put my hand to the plow as it were, I want to be all here, in this place and in this time that God has given me. God has gifted me with jobs that allow me to constantly be learning. Did you know that there are all sorts of nerve cells who send messages at differing speeds to your spinal cord: the A-delta nerve fibers traveling at 40 miles an hour while the A-beta fibers speed past, competing for attention at 180-200 miles an hour? I’m learning about pain so I can be better equipped to help people who struggle with chronic pain. I’m reading all sorts of things about boys and men, what it is to be a male in this culture of masculinity. You know I never thought to understand my husband through the lens of him being a man? How I wish I could go back and care for him better, to understand him more thoroughly and thus love him more effectively. I can’t go back and it is this that so often radically grieves my heart. The damage is done and I can’t undo the harm I’ve done. But I am alive now, here, and so I’m excited that after months of conversation and preparation, I am collaborating with a fantastic fellow at our local hospital to put on a parenting workshop on Raising Resilient Boys.
And good grief, Sunday school and church alone give me so much to ponder and to expand my understanding. For nearly seven months we covered the topic of Transgender thanks to the incredible commitment to study and learn by my pastor Brian and now I’m learning from Gregg about the history of thought that has brought us through the “Dark Ages” to the time of the Enlightenment and Romanticism and into this age of modernity that proposes the “Separate Sovereign Self.” Alongside these I study childhood sexual abuse and the impact of trauma on the body and in relationships. Everywhere I turn life is throbbing with fascination and worthwhile considerations as everything ties back to who we are and ultimately to this offer from God that we might find true life only in Him.
The Lord is my hope. “Do not be afraid; you will not be put to shame. For God gives life to the dead and calls things into being that do not exist.” Romans 4:17
Here are links to two videos produced by my dear friend Brian for Allistaire’s memorial. I can’t get over what a spectacular being she was. I miss her so keenly and I long to see her again.
Video 1: Allistaire – Who She Is
Video 2: Allistaire – Boundary Pusher
I’m also riding in Obliteride again this year, for the 6th time. I made a commitment that I would ride every year that Obliteride exists or until cancer is cured. Turns out cancer continues to harm the vitality of those we love and steal away their lives. It seems everywhere I turn, cancer continues to loom. Sadly, a child diagnosed today with Acute Myeloid Leukemia has little additional options than Allistaire was offered nearly seven years ago. But I know there is change on the horizon – an ability to look at cancer in far greater precise and personalized detail so that the means of overtaking cancer will be both more effective and less destructive to the life of the person as a whole.
It would honor me and Allistaire’s memory greatly if you would consider supporting me this year in Obliteride as we again fund cancer research to the greater well-being of those we love. As a reminder for Bozeman folk, our own Cancer Center at Bozeman Health is part of the Seattle Cancer Care Alliance which means that your cancer treatment options are directly tied to the incredible research and clinical trials at Fred Hutch Cancer Research Center in Seattle which Obliteride funds. You can donate HERE.
A few amazing facts from Obliteride 2013-2017:
$12 million dollars raised by Obliteride since its beginning in 2013
$2,800,000 raised in 2017
$23,353.21 raised by Team Baldy Tops in 2017
$150,774.21 raised by Team Baldy Tops since the beginning in 2013
You can also join our Team Baldy Tops as a rider or a volunteer. Check out the Obliteride page for more details.
What can we do this year? Below are pictures from Obliteride 2017 and the slate in honor of Allistaire set in the courtyard of Fred Hutchinson Cancer Research Center – a place most fitting to remember her – a place where she and I spent a lot of time together as she received treatment and the place where some of the world’s top pediatric Acute Myeloid Leukemia researchers are housed.
I have been unable to write, largely due to being so incredibly busy and no longer having long stretches of time and solitude in which to plumb the depths and try to put words to the blur. And the other truth is that I no longer have the freedom to be as exposed. The ravages of my heart are not only those of innocence, of losing a child. And in pursuit of my profession as a clinical social worker, for now it is not to the benefit of those I seek to serve to be so transparent.
It is a loss and I honestly don’t know what to do about it and so, really, I have done nothing. I have remained quiet. But words have come in fits and spurts along the way and I thought perhaps I’ll throw them out here and there as I can. They’ll come in no particular order, without editing except the occasional necessary deletion.
The list below came over the course of a few years, spanning from Washington to Montana, prompted by Ann Voskamp’s Book, “One Thousand Gifts.” I have heard quite a few say they tried reading this book but about a third of the way through, put it down. I won’t lie, when I first began reading it, much sounded obvious, even trite, like any wisdom the world might have to offer. If I recall, it wasn’t until the last third that the richness and worth came shining through. So perhaps try it again or for the first time. Persevere. It is easy to take stock of the good and so I have done here.
Harder still is it to give thanks when all is wasting away. You will not see here an overt thanking God for rot and loss, for cancer and separation and loss of love. But these thanks sat amongst blood and decay and brutal violence against body and heart. They were a grasping, a fight to not give way to the blackness that threatened to swallow, to suffocate and blind. To give thanks in all things is an act of obedience enabled by the Spirit; a declaration that there is a good and sovereign God though all may look to the contrary. It is bellowing in the rib cage that there is more than can be seen and that this is not the end. I believed it then and I believe it now.
And when the hot tears come and the question hangs heavy yet again, “Why Lord? Why?” am I not obligated to also ask after the “why” of so much good, of so much bounty? If I am to question, let me question it all, let me take stock of every grain, bitter and sweat. I do not suppose I will come to an answer that satisfies, but I believe my rage will quiet and I will bow in awe once again before a Holy God.
Thanks be to God:
1. For the crystal nature of sugar
2. For tart fuchsia raspberries
3. For God’s conviction of my selfishness when on the phone w/ JN
4. For alone time at a coffee shop
5. For hard books to read
6. For time during Allistaire’s nap
7. For the first heard call of the robin – knowing winter is coming to a close
8. For the way a baby can entice anyone in their path – just be their little adorable existence
9. For my own bed at home
10. For a 60 degree day the first week of February
11. For warmth from the sun and simultaneous refreshing cool air
12. For Allistaire cocking her head to the side and running her hands over my hair
13. For Sten making it to mile marker 40 in Montana
14. For Solveig’s gentle love for Allistaire – stroking her cheek and head, asking her if she knows she loves her
15. For Solveig’s big beautiful eyes
16. For my 10 1/2 year old mattress that is still incredibly comfortable
17. For the hope that I can change because God says I can because He will do it
18. For sunny mornings at home with all three of us girls still in our jammies with unbrushed hair
19. For the elegant slender green trunk and branches of the Japanese maple with branches outstretched and upturned at the ends; tips turning to reddish orange and enladen with rain drops like heavy jewels on the hands of a thousand old ladies
20. For the sound of rain on the roof and pounding the metal chimney
21. For the electric purple of the azalea blooms defying the drear of the incessant rain
21. For the bright pinky white of the weeping pussy willow standing out against the dark rainy afternoon
22. For Solveig’s wide eyes as she explains that she is down stairs because she is taking a break from her Legos
23. Creation, not curse, now defines us as His image bearers
24. For the delight of making coffee with my lovely little French press that reminds me of a beaker in a laboratory
25. For the unexpected gift of a friend and ally and sister in Lysen
26. For the sweet fresh smell of newly cut grass
27. For the sound of a chain saw, reminding me of summer days growing up
28. For the satiated feeling that follows exertion
29. For the delicious feeling of warmth on my back from the late afternoon sun
30. For bright fresh newly unfurling leaves
31. For tiny barely visible first snow flakes
32. For the cramping sense of hunger
33. For silhouetted trees blowing fiercely in the wind, the round aspen leaves shuddering
34. For the taunting expectation of hot tasty cheesy pizza
35. For the crackling sensation of the first sip of cold Coke that makes your eyes water
36. For Solveig’s joy for the first coke fizz
37. For the transition from hunger to satiation
38. For a warm brightly lit room when you’ve come in from the dark cold evening
39. For a laptop that allows me to do so many things unhindered by place
40. For the way music can slow down time and situation and swell the heart and lift the eyes
41. For a handrail and a million individual blades of grass on land near and hills far coated in sparkling frost brilliance – coruscating in the sunlight
42. For a breakfast where I am only responsible for myself
43. For getting to drink hot coffee out of my beautiful blue mug – holding its warmth by the smooth rounded handle
44. For the warm sun on my face and the front of my legs on a freezing bright morning
45. For the pleasure of going to bed with clean smooth skin
46. For windows that allow me to stay in the warmth protection but see out into the cold wild beauty
47. For the way Solveig holds her hand over her mouth and squinches up her shoulders, her eyes all alight when she thinks she’s said something so funny
48. For a good nights sleep with many dreams
49. For a day without the binding pain of a headache
50. For a hot shower and the chance to start the day afresh
51. For my husbands bright green eyes with the brighter still flecks of brown
52. For the peace inducing sensation of filling your lungs full with air
53. For glazed blueberry doughnuts from Town & Country
54. For discovering something that will bring someone you love delight
55. For the wavering shadows of trees on walls and furniture and legs
56. For the warmth of sitting in the sun streaming in through the window
57. For John who so carefully cut my hair into a lovely 80’s style today
58. For the never-ceasing enjoyment of blue and green sitting side by side
59. For a long autumn weekend full of sun and cold
60. For clouds heavy laden with gray-blue bellies of rain
61. For sun laying across hills casting shadows wide
62. For email that allows me to communicate quickly and directly
63. The craziness of the immensity of clouds
64. For brothers and sisters in Christ who you become bound to through pain and loss
65. For wind that shakes and creaks this old building – that wind can do that
66. For tangerine fire swirled by the sunset on cloud bellies
67. For being forced out into the cold night where there is fire smoke in the air and the first stars radiate white pure light
68. For the first time seeing the good, the blessing in being between the already and the not yet – that I have so much blessing and joy right here in the middle – in this inbetween place. It is not only angst for the limbo that it is, but there is space here between what has happened and the days ahead. I will take my rest in this place
69. For white of the half moon in the morning sky
70. For a weekend well spent seeking The Lord and coming to see Him more
71. For lilting southern accents
72. For the pairing of the sadness of remembering and missing my grandma and the promise that I will see her again
73. For phone conversations spoken in a foreign language that I don’t understand but someone else really does
74. For newness of life, for transfiguration, for the hope that my life, my very heart can be the ugly-beautiful – a place where God is seen
75. For stands of aspens
76. For old neon signs
77. For blinding light off the Gallatin river
78. For the grace not to swear every other word
79. For cameras that can capture beauty
80. For barn wood
82. For three silos in a row
83. For first snow on the Bridgers and Spanish Peaks
84. That so many glorious books are written in my native language. So much is thus accessible to me
85. For hot soup
86. For Allistaire learning to go potty
87. For dipping toast into soup
88. For honey on the finger and Allistaire’s declaration that that’s silly with the words of the song, “Oh how He loves us,” in the background – the utter truth of it – overwhelming!
89. For Allistaire turning her head singing the song with the music
90. For misty cloud descending on dark evergreened hill, fading yellow aspens in the foreground
91. For a few more minutes of quiet on a cloudy October morning
92. For the quiet hum of the heaters warming the house
93. For that sweet little insistent voice downstairs -alive. Alive! Calling mommy 🙂
94. For morning light slipping down between the hills illuminating the last yellows of fall
95. For a couch in disarray from reading to Solveig before school
96. For a grandma close who can take Solveig to school and Allistaire can sleep
97. The sound of wind buffeting the car door and trees
98. For the thinnest line of snow on the very top ridge of Sacajawea Peak
99. For iPhones that allow instant love to be communicated
100. For Sten’s giddiness in teaching me about credits and debits
101. For somehow bring good out of all these flies in our house all the time
102. For ice crystals on the window pane
103. For plumes of wood smoke from chimneys
104. For the muddled blues, grays and whites of a winter afternoon sky
105. For a magpie sitting on the wheat colored horse in the snowy field
106. For bird nests revealed in leafless trees
107. For old fence rails
108. For heated seats in my car
109. For yarn and crochet hooks
110. For Gregg and Anya – that God gave them to one another and two children as well
111. For wood gathered in the valley all cozied up to the foothills of the snowy blue mountains
112. For Iran-Contra Affair vans
113: For pink cheeks and nose on a cold 18 degree night out as a family watching ice climbing
114: For snow blown into the bottom curves of the little square window panes on the front door just like in a painting
115: For the unique, strange, painful bond of our cancer community
116: For the joy of making fresh tracks through snow and hearing the squeak underfoot
117: For bowels and intestines working properly
118: For the yellow stubble of grass sticking up from the field of white snow, echoed in the yellow center line of the road
119: For Sigor Ros music that stretches out space and time and thought and vision and smoothed the brow with it’s elongated tones, stretching out out to the horizons
120. For tall, lanky, naked trees moving in the wind, their slender upper branches swaying and twisting and yearning
121. For kind doctors who take the time to listen and explain
122. For cameras that can look down the esophagus and stomach etc
123. For 14 months of life since I last sat in this waiting area for Allistaire to get her Hickman out
124. For a transplant that is pure gift
125. For clinical trials at Fred Hutch
126. For knowing my husband will soon be by my side as we wait bone marrow results
127. For Seattle Children’s Hospital
128. For “Seeing Through To God Places”
I am honored and humbled to have been asked to write an essay for Kindred Mom in honor of September being Childhood Cancer Awareness Month.
Following is the first part of the essay. To read it in full, please go to : Kindred Mom/A Flourishing Life
In the line that meandered through the displays of deep velvets and the sparkle of sequins sown to necklines, through tables piled with holiday décor now a little less festive with Christmas past, I stood, hands full. Turning the items this way and that, considering, shifting my weight from one foot to another, wondering if I really needed this cheery garland now half off, or the ornament and the sweater meant to be paired with a party dress. But such great deals, hard to resist.
At some point I looked up, my eyes swept the scene before me and the frenzy of the after-Christmas sale seemed to hush. Had I not been here before? Had I not been here hundreds of times before? My favorite store, compelling not just for what one could purchase, but also for the experience of it, just the sheer delight of walking into its beautiful midst. Colors and textures, patterns and light all satiating just a bit of my hunger for beauty. Somehow the unspoken draw that this place could help me set the world a little right, enable me to carve out a space restful and fair.
My heart startled, a gag constricting my throat, an unconscious shake of the head, trying to clear the bafflement, the tilting sense of disorientation. The contrast suddenly slicing, a rogue waving knocking me off axis. How? How can these two worlds lay side by side? No more than a mile up the road dwells a place I had known about for years, but never before known. The Children’s Hospital sat on a hill on the way to my friend’s house, on the way to a lovely park along the lake, to a plant nursery I liked to peruse. It was a landmark I passed by, never a destination.
To read in full go to Kindred Mom/A Flourishing Life
I sat in the chair across the small room from this young man I have begun to know, a man who lives much of life in retreat, in self-shelter, and who was speaking of his immense fear. As I have been granted entrance, each footstep is placed with care as I walk into the space of sacred ground, of places tender and vulnerable. Here, where I have been allowed in to catch a glimpse behind the veil of one beating heart, of one life…flashes of beauty, wells of dark, flutters of fear, and wounds. Wounds upon wounds. Wounds echoing in life after life. Wounds of loss, of abandonment, of rejection, of being cast off, of not being counted worth it.
We talk of fears, of “what ifs?” What if you went another way? What if you looked down at those two rutted out tracks you’ve traveled a hundred thousand times and decided this time, this time you will go another way? Inertia would be of essence, that force to get up and out and travel a new path. What if there were a way to see your fear before you, to look it in the eye, to walk forward and through? What if this time you didn’t try to run away, to deflect, to distract, to drug the senses so you just don’t have to feel?
“So conquer my fear?” he ventures. He describes a decimation, an assault, a radical diminishing of power of that fear, a destruction, an attempt to remove, crush and do away with the fear. This word conquer doesn’t feel quite right, for what do we do with fears that are as real as anything we know? Not fears simply imagined, or fears exaggerated and inflated, but fears real and concrete? What if that fear should be full of power and might and tower before you? There are whole spectrums and realms of fears, but what of those fears that in their terror actually reflect things of immense value? We wrestle with our thoughts, with our words, turning them over this way and that, trying to get a gauge on them, trying to make out our approach to these unwieldy monoliths.
I have a handful of fears. No, no really far, far more, but of the whole bunch there are some whose dark shadows cast the most terror. Fears whose fruition can never be undone, whose aftershocks quake endlessly underfoot. Despite all my might, the entirety of my intellect, all the great force of my will, despite the swell of my fierce love, I have known the fulfillment of two of my greatest fears. There seems to be no motion in the thousands of moments in each of my days, that I do not feel the barbs dragging sharp across the tender raw flesh of my heart. There is no getting away from these vast sorrows who penetrate and saturate nearly every action, every thought, every time of day, every place and interaction. Sometimes I am engulfed, find myself swamped, going down, going under, the flailing and fight to stay with my mouth straining for air above the waves. And sometimes the quiet longing of no more, just be done, just gone.
When the last wave of devastation finally came for Job, he sat in silence with his friends for seven long days, unable to speak, no words remotely sufficient to even begin to form some perimeter to define the loss, to take stock of what was left. Just silence, just mouth gaping, just horrified awe and a terrible lack. Over a year has passed and still my jaw lies slack. Little fits of words, a cluster of sentences here and there. How to begin? Where? The questions too numerous, too vast, so daunting. The ravaging of the storm so great that seemingly little remains, even the scaffolding torn, ripped up from its footings. Questions as big as the vast blue Montana sky, no equation to measure the diameter, much less the means to traverse.
But there was a prologue to the woes that would come, nearly a year of stirrings, of invisible and radical rearrangement. Months of wrestling that would eventually flow into these day: On Labor Day weekend of 2011, after a long evening at a friend’s house, like some broiling infection desperate for the lancing, my husband finally let loose with the reality that he was no longer a Christian, no longer a believer in God. I found myself going down, down into the vast darkness of a crevasse of the unknown, of uncertainty, of radical sorrow, of assailing questions. We were only days away from going to Hawaii in celebration of our 10 year anniversary. I had no idea how to celebrate, no idea how to orient myself to this fundamental shift of trajectory, one that had been shared, been a binding between us, now severed. The next wave brought buoyant hope that we would at long last be able to move to Montana with the offer of a great job in Bozeman. And that wave came crashing down, slamming our limbs into the rocks the very next morning on December 1st, 2011, when the word “leukemia,” was first uttered in conjunction with our little beloved Allistaire, then only 21 months old.
But before all this, in that year that preceded, I think the Lord began to make evident His answer to my prayer, prayed in times past. After what felt like years of stagnation, I told the Lord one New Year’s Eve, “I want to grow. I want to be like those plants whose leaves are dark and sturdy with age but who also have those tender, delicate, bright green leaves of new growth.” I could never have imagined what growth would look like, what growth would require, what radical pruning would be necessary. I had no idea that what growth I really needed went down to the root.
The wrestling of that near year is summed up by my rage and fury that I was finite, that I could not seem to change myself nor my circumstances and that God wasn’t fulfilling what I thought was His end of this being a Christian bargain. The deal goes something like this: I’m jacked up so You/God will fix me, make me all better and pretty and nice and I go on my way, and while you’re at it, cause You’re all-powerful and all, make my life look like I want it, what I deem as “good.” I sort of got that I was finite and that I needed God since He’s a whole lot bigger and stuff, but the part I didn’t get, the part where God absolutely cut me at my knees and knocked me to the ground was this: that my need for God was of far vaster proportions than I could have ever guessed nor ever wanted to accept and God gets to decide, God gets to determine what is good and I don’t get to boss Him around to do my bidding. He is God and on one spring day in 2011, I fell to my face in radical submission to Him, to His will and to His declaration of what is good and what my life should look like. And by the way, I had thought I was okay with needing God, but what I discovered was that I was not at all okay being utterly dependent on Him; that thought was revolting to my finite, western American, 21st Century mind. But flat on my face before God, I think I had my first real glimpse of His utter “otherness,” His holiness, His Godhood. It was my first real taste of the “fear of The Lord.”
I had no idea what was coming, nor how much would be stripped away from me. But in God’s gentle and profound grace to me, He had already brought about a radical transformation in my heart in which I had begun to find delight, goodness and life in the yielding to Him, in the saying “Yes, You are God and You get to choose.” As I look back over the long treacherous road stretching out behind me, I can see how over and over, He went before me. He cashed provision for me around the bend, long before I could see the “how” of His care.
I stood on the shore of that California beach with Matt, tall and lanky, giving me instructions on how to make my way into the ocean. “You swim through the waves,” he told me. Determined I strode forward and attempted to re-enact in my body the words he had offered. Before I knew it, I had been slammed down with the force of the wave, body twisting in the churning water, a sense of desperation to get my footing, a gasp of air and another wave knocking me back down. Wave after wave hit, never enough time or sense of direction to get myself upright before the next one came. Eventually I sat exhausted, spent, shaking in the sand.
It has been five and a half years, wave after relentless wave crashing down, scouring grit and sand against my skin, being beaten against the rocks, ceaseless gasping for air, the sensation of going down, being sucked under now common place. Disorientation, baffled, bewilderment, mouth gaping, eyes wide with terror, utter exhaustion, and tears burning, salt stinging in ragged cuts, abrasions. Wounds upon wounds. I am still here, though sometimes I’d desperately like not to be.
At multiple points in these years, Sten declared his un-love to me, his not-love, his I no longer love you. I have felt so desperately alone, fear thick, heavy, both hot and cold tightening around my throat. That deeply rutted road of my mind and heart, neural pathways laid down thick ensuring speed, ensuring unwavering direction, the pulsing cells of my heart contracting in unison, a relentless chanting of FIGHT! The structure of my brain stem oriented utterly toward not flight, not freeze but Fight! With every fiber of my being, every exertion of my intellect, every coursing hot throb of love, with all my great might I could gather and bring to bear, I fought for Allistaire. I held nothing back and I set everything aside with one singular aim, one white-hot center point of target, I fought for her life.
And it was not enough.
I could not determine the outcome.
It was out of my hands…out of my finite grasp.
And I have struggled and gasped and gagged trying to sit “God is good,” next to “my child is dead.”
Her foot hit the door of her bedroom as Sten carried her stiff body out of the house that dark April night, and they zipped her into the bag with the fancy fabric, and the van drove out of sight down our driveway, Solveig wailing into the darkness, I knew. I knew it was “game on.” One fight had come utterly to its end after so very long, after so many twists and turns, highs and lows, there was nothing left to fight for. And rushing into that vacuum, that space left behind as she left our lives, came crushing the fight for my husband, for my marriage, for another cornerstone of my life, my identity, my place in the world. In all those long years, “we” had to take second with the vast majority of our attention fixated on caring for Allistaire.
But it was not enough.
I could not determine the outcome.
His heart had already departed from me.
On September 5th, 2016, Sten made known there was no more “us.” After fifteen years of marriage, his pursuit of his own happiness meant for him walking out of the threshold, of severing the hundreds of thousands of cells that had grown between us. On May 22, 2017, our divorce was final and with his permission I took his face in my hands one last time, and with a kiss on his forehead I declared to him the great intention and longing of my heart, “I leave you with a blessing and not a curse.”
He once slammed into a tree while snowboarding. There was forever a dent there, and indentation where the cells never grew back and filled in. I used to like to put my hand there, to cup that place of lack, the tree unseeable but its impact never to be undone, forever seen. There are great caverns, places hollowed out in me where once dwelt he and Allistaire, beings so precious and dear to me, flesh of my flesh. Gone. You look at me and you cannot see them, but their absence will never by undone, gouged out for all my days.
I remember days in the hospital with Allistaire, nights I would go to sleep crying, waking with the morning and still crying, lying there in the couch that turns into a bed, terrified to set my foot to the floor, terrified to begin the day, so well acquainted with the reality that the entire earth could tilt on its axis before day’s end. There has been no let up, no ceasing from the striving, no option to stop, just a constant harried insistent demand that I put one foot in front of the other, a willing to move through each day. Relief when night comes and I no longer have to live through that day.
I no longer walk through a mine field, never knowing what step might be one more reason for Sten to walk away. I no longer walk with the high-pitched sizzle of terror saturating my blood, the fear of test results, of lab results, of flow cytometry, and PET scans, ASTs and ALTs declaring the state of the liver, of creatinin in kidneys and the ejection fraction and shortening fraction of the heart, of the sound of fluid in the lungs or the poisoning of ovaries and scraping away of IQ from radiation like Hiroshima. My iPhone no longer auto corrects “and” to “ANC.” Most people with whom I interact daily have never met Allistaire or Sten. Those radical indentations, those places of lack, lie barely concealed behind my every day tasks.
Now my days are filled with 30 hours a week at Thrive as the Parent Educator and 16 hours a week as an Integrated Behavioral Health Therapist Intern at Community Health Partners, as I attempt to amass the 3,000 supervised hours required to obtain my Clinical Social Work License. In the evenings I go home to an empty house, the cookbooks lie untouched on the shelf and there is no sound but that of the wind and birds outside. I lost one child and have had half of the other taken away. I live in a house and drive a car intended for four. I have been whittled down to one and a half. For fifteen years I lived and moved in the realm of couples and families and now, now I don’t know what I am. I have been radically ejected from the reality of families. Nebulous, ambiguous, extraneous, that left over part of a fraction. I am disoriented, bewildered, baffled, radically exhausted, saturated with sorrow, deeply bruised, bloodied, cheeks tear streaked. I have become so radically sober. I don’t know who has been left behind after all this tattering, this relentless erosion of my being. Everything has been impacted. The tsunami washes away in every direction, present, future, past, nothing left untouched, nothing left unchanged, everything tilted and swung off its axis. I look back and wonder in confusion, “when did it all begin?” I crane my neck to see all the way back, all the way to those first days and months and years with him, all the way back to my womb where cell was joining to cell and perhaps even further back than that, something went radically wrong.
If you look at me now you might be mislead to think I have not moved much. The tenets of my faith look mostly unchanged. I sit on that spectrum of ideology and philosophy and spirituality in just about the same spot. What you see before you may not allow your eyes to perceive the vast distances my heart has traveled, the tender places worn down from ceaseless wrestling, the radical rearrangement of the scaffolding of my being, the sights I cannot unseen, the weeping that seems to have no end.
One thing I know amongst all the overwhelming unknown – I turn my face to God, to Jesus my Christ.
For facing my fears I have. I have sat across another table from Sten, this time signing legal documents that end my union with him. I have sat at a table and signed a document to have the flesh of my beloved child incinerated, reduced to ashes, now housed in a bag. But this is not the end of facing them. Like the mountains of my youth, those Cascades that appear to be a long line on the horizon, they extend outward behind that illusionary silhouette, how far I do not know. There are mountains beyond mountains, endless dark valleys and valleys bright, mountains jagged and threatening calamity and mountains upon whose tops I might just see the whole wide world. They go on and on into the distance. I feel the darkness closing my vision, the sounds growing faint and my strength slipping away as I stand too fast to take in the view. There is a thrill in the sensation, the wondering if I might actually finally just be done, no longer required to keep moving along this rugged path.
But the darkness subsides and sound returns and I find I can stand. There are mornings I want to despise another wakening, another day before me. But the Lord continues to add day to day to day and to cause my lungs to expand once again, my heart to beat on. Part of the struggle to move forward is the not knowing where to go, much less how to get there. There is no landmark before me. I have passed by those columns, the markers of an adult life of school and marriage and children. I know only that I must work to provide for my life and I will continue to be a mother as long Solveig or I dwell in this land of the living.
This past week has brought light to another place of darkness, to another great fear now realized. I see now that I am ensnared, caught in a tangle. I see that I am not just the mother who has lost her child, nor the woman whose husband has cast her off, but there is blood on my hands. Somehow in the swell of my sorrow, the tears that constantly fill my eyes and blur my vision, the deafening wail of my own hurting heart, I had not really seen how much I too have been perpetrator, doer of harm. Oh I have always been well aware that I am not perfect, that I sin and fail along with everyone else, but this week in conversation with a number of people, I have had to face that I have also thrown the dagger, my whirling fury and fear has inflicted harm and brought pain to others. I too am to blame.
On Tuesday night and on Wednesday night and on Thursday night I wailed out into the dark night sky with sorrow and horror that I have brought harm I cannot undo. I have no ability to go back, flying over the surface of all those long gone days, scanning for the moment when the devastation began, to know the place to go back to and intercede, to rewind and redo. The universe does not work this way, there is no reversal of what has occurred and I gag and my heart roams, rushing to and fro, aghast and uncertain, what now to do with all this ravaging, ravaging added to ravaging, loss to loss, wound to wound. We are all a bloodied mess.
I don’t know what to do or how to proceed. I want there to be some “clean-up” protocol for this toxic spill. The way forward is uncertain, but the Lord has made at least a few steps clear, coalescing out of the muddied fog. I must take stock. Like the explore Clark, like Lewis, I need to travel through this land and make note of what is here, to walk down into those frightening valleys, to walk the plains and scrabble up the mountains to see the view from there, I must look at the landscape of my heart, of my life, of my interactions with those with whom I dwell. And then I will begin to know the contours of the harm I have inflicted, I will start to see how one connects to another, how self pain intertwines with the pain of others and loops back again to intersect and bring about more pain.
I don’t know the way forward but I know that owning the harm I have done and asking forgiveness from both the people I’ve harmed and from God, is the place to begin. Inviting the eyes and ears of others to help me see and to hear where I have been blind and deaf is a place to begin. Asking wise guides to tenderly and courageously lead me to help make sense of it all is essential. I don’t know where this road leads, but I never really have anyway. It is terrifying to face the real fact that I have lost Sten and my marriage and my life in significant ways because of my own failings and my own sin. He and I, we both have blood on our hands. And I cannot undo it. I can only ask the Lord of the Universe for forgiveness for the ways I hurt Sten and failed him and seek His provision and guidance for the road before me. I must ask Solveig my child, and Solveig the woman, to forgive me for the way my sin undid what should have been hers, a home with two parents committed to loving one another. I have to ask my parents and my in-laws and my brother and my brother-in-laws and my sister-in-laws for forgiveness for the part I have had in all this ravaging and its far reaching impacts on our family. I have to ask forgiveness of the on-lookers who just shake their heads as they pass by this messy tragedy.
So much of the time it all just feels like too much. Too much. And I should like to just slip away, to cease existing, to vanish. After Sten told me he no longer wanted to be married to me, I could hardly eat for two weeks. I whispered to myself, I don’t want to exist. I far prefer to no longer be. I wanted desperately to waste away. I sit across from the man who mourns his life and despairs his existence and I know that woe, that radical inability to go back, the incapacity to change what is true, the appeal of no longer having to endure the turmoil. Can I not just lay this burden down and never ever have to raise it up again?
This is what my dear brother Patrick wrote to me as I expressed my undoing grief: “I know this may sound like a platitude, but I sincerely believe this: no matter how bleak life may seem, no matter how broken your mind, heart and spirit may be – life and love and joy will creep back in. All is entropy, yet life continues to find a way.”
And I believe this is truth. All around me the creation exclaims it, in the voice of the rustling, flitting aspen leaves, in the deep thunder in those steel gray clouds, in the incessant vibrato of the crickets, in the water that makes way through rock, in the unweighable girth of the snow flake who one by one by one amass to form the glacier that gouges out the mountain wall, in the rush of the wind through the fir boughs. There is a force that overcomes another. “You know that moment? That moment when the plane is rushing down the runway, and the whole frame of metal riveted to metal shudders at the attempt, and then there is that glorious, mysterious, terrifying moment when the force of gravity is finally overtaken, overcome by the law of thermodynamics?” You get lift, you rise. I doesn’t seem like it should be possible. It is illogical that a great mass of metal should dwell far above where your neck cranes to see. And yet it is, it is. One force overcomes another.
Yes sin and death are powerful foes, seemingly unstoppable, absolute and concrete, permanent. Yet there is another force at work. There is a power that overcomes their power. There is a life that overcomes their death. My hope is in Christ. I’m banking everything on Jesus. I open my eyes to another day rather than finding a way to extinguish my existence because I have hope. I am looking for the redemption and resurrection that has already been secured in Jesus. Yes, I have sinned deeply and vastly and there are real and brutal consequences that I have to live with as do many others who have been impacted by my harm. I have to live with those gouged out places in my being where once dwelt a man I loved named Sten Karl and a little bright love named Allistaire Kieron. I can never get them back in this life. I have to live with these scars. But my hope is in Christ Jesus, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. I fix my eyes on Him. I lift my eyes. I take in the full view. My sins are forgiven in Christ. He can redeem all this brokenness. This is His promise to me, to all who believe in Him. I will see Allistaire again. Death will not have the last word. There is a river that flows from the temple of God, from the altar where Jesus laid down his life as the perfect lamb. This river brings healing and life and one day I will sit in the shade of trees along that river and I will know bounty beyond my imagining.
How to get there? Where to go? What is the path? Jesus said it so simply and clearly and profoundly. Jesus answers, “I am the way and the truth and the life. No one comes to the Father except through me.” Jesus is my way, He is my truth, He is my life.
– – – – – – – – – – – – – – – –
The honest truth is I have finally made myself face this blog and attempt to put some words to all this immenseness because I still need your support and I am utterly aware of how wretchedly tacky this is, but the earth has once again swung around its orbit to summer, to August, to Obliteride in less than a month. For the fifth time, yet again in weariness, with tears, I will ride my bike. I will try to push through 5o miles to raise money for cancer research at Fred Hutchinson Cancer Research Center in Seattle where so much of Allistaire’s treatment options came. Whatever difficulty this is for me only binds me closer to Allistaire who endured so much as a little girl and who ultimately had her life ravaged and extinguished by the relentless onslaught of cancer.
So many of you have already given so much, and I haven’t even thanked you in the entirety of this past year for how generously you gave in her honor, not only last year in the wake of her death, but each year. I ask your forgiveness for my lack of articulated thanks and I ask your grace to trust that there is much I have simply been unable to do this past year. I am often quoted the statistic that 70-something percent of marriages end when a child dies, and while I refuse to give credit for all this devastation of my marriage to our girl’s death, it is indeed true that cancer not only took my Allistaire, but it also extracted a great price in my marriage with what amounted to years of separation and more stress and strain than I can rightly begin to describe. The ravages of cancer are still cutting into my life, as it is for so many far and wide. If you are willing, I ask that you would consider supporting me again this year in Obliteride, to support an accelerated pace of cancer research that will yield better and hopefully, curative, treatment options for both children and adults with cancer.
If you would like to donate in support of cancer research, please click HERE to be linked to my Obliteride page.
I feel compelled to make one last point. The single biggest reason I have not found the ability to write this past year is that I have not known how to be real and honest and do so in a way that gives as little attention to Sten as possible. I love him and I will never turn away my heart from him. I sincerely want good for him and I kept quiet for so many years in an attempt to protect him from criticism, to give him as much space and time as possible to sort through his own difficult wrestlings. I have no desire to bring harm to him in my heart or with my words and simultaneously I am trying to find a way forward to be real about my own heart and to voice my own story. Please know that I will not allow any comments that cut him down; they will be blocked or removed as quickly as possible. I cry out to God all the time to remind Him that I do not deserve Him any more than Sten does. On June 16, 2001, I made a covenant before men and God to always love Sten, until death do us part. I have no allusions about any future relationship with him, but I intend to keep my covenant of unconditional love, with the great aid of the Holy Spirit.
You held up that one half of one grape tomato on your fork, little hand shaking, little voice shaking, asking, pleading whether or not you had to eat it. Yes. Yes you have to eat it! Demand in my voice. Declaration. Staking a claim, thrusting that stake into the flesh of the earth. “You have a future!” I am your mother and I am claiming a future for you, I am declaring you a child who will live…if I have anything to do with it. Eat your vegetables!
But I had nothing to do with it. That was your last real meal and I forced you to eat a tomato. I will never forget your face, sweet eyes full of terror and desperation to somehow get out of eating that wretched tomato. You wanted pizza. But I had to say No. No. No, because the task at hand was to starve your cells of glucose all those starches of crust would provide. No, your cells must wither and yearn until the next day’s glucose injection for the PET scan when they would slurp up the energy giving glucose, powering their metabolic processes, the glow of their fervor lighting up on the screen. Those most hungry but with no business living would show up in yellows and oranges and reds, evidences of the throbbing, tenacious life of cancer, cell by cell by cell.
One year ago on a Monday night in Seattle, in our sanctuary away from home, in our Ron Don apartment, I could never have imagined you were eating your last meal. I could never have imagined that just two weeks later you would no longer speak, the ferocious cancer cells eating away at your brain, forever closing your mouth, forever silencing you dear little voice. As I turned you on your side to clean you up, the blades of your hip bones cuts sharp angles, your legs so thin, your frail left arm jutting up into the air as the pain coursed through you at even my most gentle touch.
I regret that tomato. I so wish I could go back to that night and say, no, no, sweet girl. You do not have to eat the tomato.
I sit in the light of a single lamp. The rain falling against the windows. Alone. No one left in this vast house but me. Allistaire dead. Sten has left. Half of Solveig.
The rain has turned to ice and beats against the windows. A flash of lightning. Thunder.
The storm passes over. Quiet except for the faint ring of the wind chimes. A sound present before these children. A child gone, a husband gone, a child absent. Still the same sweet tones move with the wind in the night air.
(All are welcome to attend either or both services)
Memorial Worship Service
(For the purpose of worshiping and submitting our lives to Jesus Christ as Lord)
Saturday, June 11th @ 10:30am
Petra Academy (4720 Classical Way, Bozeman, MT 59718)*Seating is limited. If you’re coming from out-of-town, please be sure to arrive early to ensure a seat. The service will be recorded and a link to the recording will be provided at some future point. There is no child care provided.
*For those who don’t wish to attend this morning Memorial Worship Service, you are welcome to join Sten on a hike up the “M” trail. Meet at the trailhead @9:30am. (Directions: Follow Rouse Ave. north (becomes Bridger Canyon Rd.).Turn left into the signed trailhead parking lot on left)
Celebration of Life Service
(A time to focus on Allistaire’s life)
Saturday, June 11th @ 6:30pm (MST)
- A dessert reception (cupcakes, ice cream sandwiches and coffee) will follow the service
- Childcare for all ages WILL be available, including a live video feed into the childcare rooms for parents who want to stay with their children
- Watch the Service LIVE, go to this LIVE STEAM LINK. You will need to register for a Free Live Stream Account ahead of time to watch (we recommend signing up Friday or Saturday morning so you won’t be delayed in watching the 6:30 service)
Feel free to wear whatever you feel comfortable wearing, though our one request is that if possible, please weary cheery colors. Allistaire was a girl who delighted in the full spectrum of the rainbow and it would be fun for our many bodies to reflect that joy as we gather together in honor of her life. Here are a few examples, the first being an outfit designed by Allistaire on her Toca Boca Tailor App (you don’t have to go quite this wild, but you get the picture):
Awesome Gift Basket Raffle
Sten, Solveig and I have pulled together a whole load of happy (new) items that were things that brought Allistaire delight. We are putting these together in a super fun gift basket which will be raffled off at the reception. Raffle tickets are $1 each (so bring your cash) and all proceeds will go to The Bozeman 3.
The Bozeman 3 is a local non-profit that supports families in Gallatin County whose child has been diagnosed with cancer. The Bozeman 3 arose out of a unique bond between three families forged in their shared experience of fighting for the lives of their children diagnosed with pediatric cancer, far from the support and beauty of their homes in the Gallatin Valley of Montana. They met in the hallways of Seattle Children’s Hospital’s Oncology Unit in early 2012. While each child faced a different form of cancer, these children, along with their parents, possessed a resolve to fight. (Our family is one of these original three, along with those of Stellablue Woods and Caden Shrauger pictured above with Allistaire)
The Bozeman 3 financially supports local families whose child has cancer, provides peer support and helps fund cancer research.
We Could Use Your Help!
We have been absolutely overwhelmed with an outpouring of love and support, not only in the past four and a half years, but again in this exceptionally hard time in the wake of actually losing Allistaire. For those who are still yearning to help, below are a number of key ways we would graciously appreciate assistance:
- We asked for 300 cupcakes and have had far more offered – thank you again for your outpouring of kindness and love. At this point we no longer need any additional cupcakes. For those who have already offered, keep Rhonda Mattson’s contact handy if you have any questions (email@example.com (406) 451-6571). And remember, ideally, we would like you to deliver your cupcakes to the main central doors at The Commons by 6:15pm on the day of the Celebration of Life Service, June 11th. A volunteer will greet you at the door to receive your cupcakes. (Below is an example of the look for the cupcakes we’re going for)
- We have created a “Wish List” on Amazon of items we could use help purchasing including plates, cups, napkins and sprinkles (to be applied to the ice cream sandwiches). WOW!!!! All the needed items have already been purchased less than 12 hours after posting the Amazon Link, so I have now removed it. Thank you folks!!!!!
- The meal sign-up has been updated to reflect request for group dinners for a few days prior and after the memorial services. Provision of meals has been an incredible help and we so appreciate all the tasty food!!! To sign up to bring meals click HERE.
***A note to out-of-town folks: The weather in Bozeman can vary wildly with temperatures down into the 30s at night, potentially, all the way up into the 80s some days. I would highly advise paying attention to weather as you pack and always bring a warm coat.
Thank you to so many folks who have shown their love to me personally and to our family in this past month plus. Thank you for your cards and messages of condolence and how knowing Allistaire has impacted your life, for texts and phone calls, gifts, meals, offers to help and prayers. Please know that all of these have been gratefully received though my ability to thank you is radically diminished and delayed.
The truth is this past near month since Allistaire died, has been a strange, mixed time which I hope to write in reflection upon more down the road. Part of our reality is that I have been very busy with my trip back to Seattle to clear out our Ron Don apartment and say thank you and goodbye to folks and all of the work necessary to put together these two memorial services in honor of Allistaire. In the midst of this I have two dear friends whose children have received the most awful of news – that like Allistaire, their disease has returned and grown and there is now no more treatment available to them. I have a third friend whose child could soon be in the same position, not to mention my two friends who have recently lost their sweet girls. My heart is still very much with these friends and if I have to prioritize my limited time and energy, it will go toward them, despite my inability to give to them in nearly the degree I desire. I have also been able to spend time cleaning and organizing spaces in our home long neglected in my absence and enjoying being outside doing refreshing physical labor like mowing the lawn and hauling limbs that came crashing down under the weight of the fantastic snow storm a few weeks ago.
Mostly I have loved the quiet. There are few sounds but that of bird chatter and wind in the fir and aspen trees. With my brother-in-law, Jens’, idea of his spirit animal being a grizzly bear in mind, we have chosen the Mountain Blue Bird to be a tangible reminder of our bright blue-eyed little girl. Mountain blue birds abound here and a family has taken up residence in the bird house across our driveway. Throughout the morning and day, I can often look out my kitchen window and see the bright blue of sky in the form of bird sitting on the fence rail. I of course don’t actually need a reminder of Allistaire to remember her – she is ever on my heart, in my thoughts and scattered throughout my dreams at night, but it is uniquely lovely to observe a creature of such beauty and loft – a creature that can flit about and sail up into the sky. It helps my heart to not only grieve the loss of Allistaire in my life, but imagine in the smallest way, the joy of the life she now lives.
The four of us are bound together in the water. Allistaire is linked to me and I to Sten, Sten to Solveig. We’re out there, floating along, living life. Then something dark comes and latches onto Allistaire and starts pulling her down. I’m flailing, trying to pull her up, my own face and mouth gulping water, waves lashing. Sometimes that thing is so small, we barely notice it. Most often we manage it. Regardless, it’s always there, always threatening, looming. Though the times where the black thing swells and we are all being pulled down into the water is familiar, the terror is always sharp and stinging. Panic. Gasping for breath. But we’ve fought it so long…it is the fifth member of our life.
And then…with no seeming warning, that black presence swells with exponential density…Allistaire is snatched off the line. We wail, we scream, but there’s nothing we can do. We watch her being pulled under, down, down, down into the deep dark of water. She disappears from our sight.
We bouey up.
Our striving ceases. All of sudden there is quiet. No longer need for exertion. There is finally a release of the tension, the ever-ringing backdrop gone. There is no longer a tug, a constant pull on the line.
But now we are three and this relief has come at the cost of our sweet girl, our beloved Allistaire.
It suddenly occurred to me the other day that I have taken the last picture of Allistaire. There are no more pictures to be taken. No new stories to tell.
On Saturday, June 11th, 2016, we will be having two separate services. In the morning around 10:30/11:00am, there will be the opportunity to worship God, to fix our eyes on Jesus Christ who calls those that follow Him out onto the water, who asks us to lay down our lives and entrust our whole selves to Him, the One True God, the Holy God, the God who is other and infinite. In the evening, we will focus our time on remembering our beloved Allistaire Kieron Anderson and the incredible community of folk that have been such an amazing support along this difficult road. All are invited to come to either or both services, but please understand they are for very distinct purposes. There will be more details to come.
**Seattle folks – I’m sorry to say, that while I really wanted to be able to hold some sort of memorial out there, I just don’t think I can make it happen. I’m bone tired and so we invite you to come to the Big Sky State – the homeland Allistaire so loved.
***If you would like to offer housing to folks coming in from out-of-town for the memorial OR if you are interested in staying with a local family, please contact my sister-in-law Jessica at either “firstname.lastname@example.org” or (406) 850-3996.
Lastly, a 3 minute Obliteride promo video featuring Allistaire was just released today. Allistaire and I both have invested a great deal of time and heart into allowing her story to be told in order that people would be compelled to join the effort to accelerate cancer research and find cures faster – so moms won’t have to tell their little girls that they are going to die because there is no more medicine to fight their sickness.
Please, it would be bring me joy, if you would take a moment and see our sweet girl’s smiling face and goofy laugh in this OBLITERIDE VIDEO.
Thank you to all who have so generously given to support me in Obliteride and fund cancer research. For those who have yet to do so but would like to, you can donate in my name in honor of Allistaire and/or those you love who are battling or have battled cancer, HERE. Please know that 100% of funds donated go directly to cancer research at Fred Hutchinson Cancer Research Center (of which our local Bozeman Cancer Center is connected via Seattle Cancer Care Alliance – a collaboration between Fred Hutch, the University of Washington, and Seattle Children’s Hospital).
I cannot count the hours I have laid next to Allistaire with this quiet music playing. Putting her to bed for a nap, closing the curtain to her hospital room and posting the sign telling the world to stay away, Allistaire is sleeping. Laying next to her in Ron Don, going through our night-time rituals.
The music plays on but she is gone. Gone. The bed is empty.
After four and a half years of fighting her great foe, Acute Myeloid Leukemia…after two long grueling weeks since Sten and I made the brutal decision to no longer attempt to thwart her disease, an aggressive, relentless, mindless onslaught…after over three hours, as her body continued to fight, to grasp for life, lungs pulling for air, and a heart, oh her heart, far stronger than we could have ever imagined, that heart so determined, so fierce, it pumped on and on and still her mouth gulped for air when her chest no longer rose and there was not one flex of her heart muscle left…
And then stillness. Only the soft rushing sound of the oxygen still trying to sustain life.
How very strange to come to the end. To have this child between us, this longed for child that together we had conceived, this little bright vibrancy now extinguished, pale, still.
We love you little sweets, beyond words and time, you are so very dear to us.
Allistaire Kieron Anderson died early this morning at 1:33am, April 30th 2016
My deep and fervent desire has been that these most vicious versions of Allistaire’s cancer cells would be able to be studied and contribute to the understanding of AML, in honor of all that Allistaire went through and in blessing to those who will be forced to come behind her. Dr. Soheil Meshinchi, one of our spectacular, brilliant and tender-hearted Bone Marrow Transplant doctors at Fred Hutch, made a way for this final offering. Soheil is the COG (Children’s Oncology Group) AML Biology chair and oversees the largest pediatric AML tissue bank in the nation. Along with other doctors/researchers dear to our hearts (Dr. Katherine Tarlock, Dr. Marie Bleakley, Dr. Phil Greenberg, Dr. Todd Cooper), he is tireless in his pursuit of understanding AML and finding ways to thwart its stranglehold on so many sweet children.
These are the words of Dr. Soheil Meshinchi to me:
“I will do everything I can to learn all we can about Allistaire’s leukemia. Her diagnostic sample is being sequenced now and we will sequence specimens that you send us…Please feel free to call me anytime you want to talk.”
“My prayers are with Allistaire and your family. We will care for these precious cells of Allistaire. Please call me if there is anything I can do.”
And this comes from him this very morning, “Dear Jai, I wanted to give you an update on Allistaire’s cells. We received them in great condition. They were processed and a fraction was used for extracting RNA and DNA. We purified leukemic cells from another subset and banked several vials. We are waiting for the result of the foundation medicine testing with plans to sequence her recent cells as well. I’m available to talk anytime you need to. Best, Soheil.”
Allistaire’s life was strangled out by cancer and while I look in hope for her to have a new body, one incorruptible, I also strive after life here and now.
Please considering honoring Allistaire’s life and tremendous fight by supporting cancer research at Fred Hutchinson Cancer Research Center. You can join our team Baldy Tops or give financially to Obliteride HERE.
*We will be planning some means of memorial in the future, but have no plans as of yet.
**Allistaire is alive in all of these pictures (with the exception of the very last picture of her toes), though they are either days or even only several hours before she died. Some may find these very difficult to see.