I hucked the Christmas tree out the door this afternoon. It was satisfying, though I wished I could have launched it even further. I wish I was a javelin thrower and could have sent that thing soaring, calculating the spectacle of its parabolic motion. I was sick of it, with its glory stripped, now devoid of ornaments and only scraggly lights that demanded day after day to be removed. I was pretty proud of myself really. Sten said he’d take care of it, but I managed to get it all cleaned up with no major disasters except some sap on my pants I’m wearing for the first time in months.
Out beyond the valley the sun is lowering to the horizon, seems just to the north of the Spanish Peaks. For a few moments the sun shone through the clouds, down in reflecting milky yellow light off of snowy fields. The wind has been blowing for days causing incessant shifts of light and cloud and sky. The wind chimes glinting with sound in the fir tree outside, singing as they have done for more years than I can remember, moving with us from place to place, singing the same notes, not melancholy but not cheery either, haunting, beautiful.
Time just keeps accumulating, moving, an ever-present force of reality, carrying me along with its tide. Another Christmas come and gone. Once more as I put away the lights, I wonder, I wonder. What will next Christmas be like? How will time have swept me along and like eroded rock, change the face of my life? We returned home from Seattle safe and sound. All went well with Allistaire and the only major sadness was that we had to cut out our trip to visit our friends in Portland due to them all being sick. I was really so happy to be going home with several weeks before we’d have to turn around and go back. But I surprised myself, sitting on the rec-room couch, crying the very next day, realizing I was entirely unsure of how to live my life, unsure where to step forward.
The clouds have shifted again, producing a vast triad of peach rays, diffuse like gauzy curtains draped down from the sky. It looks like a blessing, like a kiss on the forehead of the valley, like lips reaching down over the blue of mountains. Like the Lord telling his beloved how He cares for her. And the sun lowers, now dipping below the clouds and the fullness of its light so immense and all-consuming, it blinds my eyes, so that all I see is truest yellow, penetrating eyelids and heart. And it is beautiful and I know it will only last a few minutes before it will pull its light from the land as it descends behind the mountains. Time is relentless and I both want it to stop and want to push it forward. My life is lived in week-long segments, blood test to blood test, and shorter, meal to meal. And shorter still, every one of her actions examined for evidence of health or catastrophe.
This morning I hit snooze three times. I never do that. I did not want to get out of the shower, but eventually I had to. With nervous tingling in my lower back, I got myself ready for the day, and forced myself through all the many steps required to leave the house for yet another doctors appointment. Last week it was a rash that showed up on her legs. Could it be GVHD? Could it be relapse? I will never forget Dr. Pollard’s words in that last appointment of Allistaire’s first go at treatment, “an undefined rash can be a sign of relapse.” Now the rays angle upward across the bellies of steel blue clouds, causing peach and pink skiffs to fill the sky. The rash was basically gone in two days but then in her appointment we discovered she had dropped one whole pound from her appointment in Bozeman a month prior. On the other hand she grew an inch since October which is pretty great. Ever the question, of what does it all mean, and ever the answer, we’ll just watch it, we’ll just wait and see. With sunset, the room, once filled with glowing light, darkens and I circle the room flipping switches and turning on lamps, pushing back the darkness and willing the day to last.
There are things one is proud of for no rational reason. There are things we take delight in that having nothing to do with us, and are entirely out of our hands. Allistaire’s hematocrit has always been tip-top, right up there at the very ceiling of hematocrits, pushing near 40 regularly. That hematocrit felt like a secret stash that would guarantee safe passage. I won’t deny it, I have scoffed at the hematocrit of others at times, smugly rejoicing in Allistaire’s fancy shmansy hematocrit that seems to always hover there at the highest heights. It’s been dropping. Bit by bit. It’s still normal. But normal doesn’t mean what it might have years ago. Thirty-six is not normal for Allistaire. It’s happened, but very seldom. Today Allistaire stepped on the scale and her weight was back, up to 37. Huge sigh of relief and thanks that all the perseverance in getting her to eat over the last week might could be helping. But then I express my fear about her hematocrit to Dr. Ostrowski and she pulls down her eyelids, “a poor-man’s test for anemia,” she tells me. “Yeah, they look a little pale.” My heart drops and the tingling in my lower back returns with force and all the way to the lab and through the rhythm of drawing blood from her tubies, once again, my face is flat, the terror of what is to come, building.
An hour later I read the number 34.4 and can only think this is relapse. We are about to be thrust once again from our home. Once again separated from Sten and Solveig. Once again my ferns will die. Well, I must stick with my diet, I think. I start to strategize how I can eat differently in the hospital this time. No more coffee. I cut that out almost two weeks ago. Only salads from Starbucks. Oh man, no more morning buns. And I can run the stairs, all nine flights. I’ve lost almost five pounds and I can now fit into one more pair of pants. Now what do we need to bring with us – Allistaire’s CD player, and her colorful little clay letters that spell out her name and her eating chair. Should I just go ahead and bring my summer clothes this time, instead of them trickling out across those 700 miles to me like the last time. Wait, what is it going to be like this time? What are they even going to do for her? Can her heart even hold up to another transplant? Will she emerge from transplant alive but in kidney failure like that other little girl I know who had transplants eight months apart? Will Allistaire ever return home again? What about Solveig? We walk down the sidewalk to return a book at Country Bookshelf and the tears blur my vision and I can’t talk to the lady as I fumble in my wallet for the receipt. Will I be torn once again from my home?
“I am your home Jai. I am your dwelling place.” But, Lord, but Lord, I want what this earthly life has to offer. I know, I know, I know you’re my home. You are my resting place. And I wraggle in my heart with the Lord and in distress tell Him I want both. But my life is not my own. I don’t get to decide what comes. I have learned these two hard truths – my love and my efforts cannot safeguard Allistaire’s life. No matter how much I love her, my love my not overcome her being stolen away unto death. No matter how much I exert all force of will and strength of mind, I cannot stop what may be inevitable. And I know this too – I will not stop loving her and I will not stop exerting all that is in me to come along side her on this brutal road. But, ultimately, she is in the Lords hands. When I told Allistaire that her sickness might be back and that we might have to move back to Seattle she said, “but that’s okay, you’ll be with me mommy.” Oh how I wish I could respond to the Lord in the same way, “you’ll be with me Father, and that will make it okay.”
Dr. Ostrowski, our doctor here in Bozeman, relayed all the test results to Dr. Gardner in Seattle who is our acting attending doctor while Dr. Pollard is on medical leave for a few months. Dr. Gardner is the doctor that sat down with Sten and I on a Saturday evening two years ago and first told us that the cancer cells discovered in Allistaire’s marrow were Acute Myeloid Leukemia cells. She is the doctor that called on a sunny winter afternoon last February 20th to say that the biopsy of the little lump in Allistaire’s back were indeed leukemia cells, and asked if we could get to Seattle the very next day to begin treatment. She said that she believes the lower hematocrit is due to the cumulative effects of the Azacitadine that is known to increasingly lower counts the more doses received. Some of the immensity of the fear and pressure were relieved when I heard her thoughts, but I won’t deny it, there is some strange superstitiousness one gains on this uniquely terrifying road – the sort that takes note of the bearer of bad news and anticipates a three for three with results coming up in a little over a week from the bone marrow test Allistaire will have on Monday, January 27th. When I answer the phone on the evening of Tuesday January 28th, what will that voice of Dr. Rebecca Gardner be telling me?
We’ve been at this so long now that I constantly feel I should be used to it all. It seems like I should have gotten over it a bit. But I know logically that this irrational. Death will never, ever be okay. Separation from family and friends and home and ravishing of body will never, ever be okay. Yes, my hope is that one day they will sit, nestled within a greater, infinitely more glorious reality that will somehow be the habitat of redemption for all sorrows. Indeed, I pray such reality already surrounds our lives in the now, despite being invisible to my human eyes. But – death will never be good. I feel that I have wrestled and wrestled, trying to take the taste of death and a life radically disrupted by overwhelming illness and call it, not necessarily tasty, but at least edible. Because it is as if every day that is what is served up before me to consume. It is the bitter nourishment of which I am forced to partake. It seems that most folks assume because we are home that we have jogged far from the dangers of death, that somehow because Allistaire has hair on her head and speaks with sweetest of voice and runs and laughs loud, that she is safe from harm. “I mean, she’s in remission right? She looks like she’s doing so great! She’s fine now right? This will be your last round of chemo right?” Remission is fickle. It is the thinnest crust of ice on a winter lake. I don’t trust it and continue to live with the presence of that great chasm of black ever looming just to the side of our lives.
“Hear Your people saying yes, hear Your people saying yes to You, yes to anything You ask, yes to anything You call them to, hear Your people say amen, hear Your people say amen to You, let Your kingdom come on earth, let it be just like we prayed to You, yes and amen to everything that’s in Your heart, yes and amen to everything that You have planned, we live to see Your will be done and see Your perfect kingdom come on earth, on the earth, all Your promises are yes, all the promises are yes in You, hear Your people say yes, hear Your people say yes to You, yes to anything You ask, yes to anything we’re called to do, hear Your people say yes and amen to You.” These are the words by Matt Redman, that sought their way into the forefront of my consciousness, like water seeking passage through rock. As I stood at the kitchen counter, prepping dinner for the kids while Sten worked late, through the myriad of pressing thoughts, responsibilities, worries, and these words, repeated, “Yes and amen to You.” And there it was so clear before me, this is what I had to swallow, this was the bitter nourishment that I need to consume to know life – I am not called to accept death or the horrors of sickness. I am being asked to say yes and amen to anything the Lord my God calls me to. It is His voice that is saying, Jai, dear child, sweet love, Jai, will you say yes to Me? Will you say, Father, whatever life you give me, is the life to embrace, because it is gift from You? Will you at long last, lay down the plans you have for your own life and truly, in your deepest core, see that your life is not your own and I am the creator, not just of the beautiful earth that surrounds you, but of the course of your life, of every single day that you have breath and every detail of your days?
I went to my Bible Study Fellowship (BSF) class on Wednesday. I hadn’t done my lesson so I only listened as others discussed the questions on the passage in Matthew – the stories in Matthew 14 that talk about John the Baptist being beheaded, the feeding of the five thousand and Jesus walking on the water with Peter coming out, in faith, to Him. To a number of the questions, women answered that the lesson learned was that if you put your faith in God, He will take care of you, everything will be okay. The scream sought to burst from my skin. “Do you call this okay?” What I want to scream is that God is not the safe refuge we love to say He is. You come close to God and you might just find your life ripped to shreds before your eyes. You come close to this one we call Father, and you might just get a knife in your gut. But I didn’t scream, instead I worked to keep the hot tears inside. Not long later they poured forth as I spoke to a sweet grey haired woman who had been one of the teachers in Allistaire’s BSF class last year. She asked if I remembered her and went on to tell me how much reading about our story had meant to her, but she was hedging, she was holding back. Soon she was telling me how her sweet husband of many years was diagnosed with AML this past July and only two months later he was dead. She could not have imagined the parallels that would be true of our two lives. She is wounded, with deep seeping sadness, and we cried hot tears together.
That same night as I went to remove Allistaire’s dressing for a dressing change, I noticed blood. The skin under her dressing has been having a really rough time the last two weeks and hasn’t been able to heal up and I assumed the small bit of blood to be her skin weeping. As Sten and I went step by step through the dressing change, we suddenly saw great fat drops of brilliant blood on the blanket. Another hole in the line, on goes the bull dog clamp, the alcohol wipe and the gauze. I call Dr. Ostrowski and determine our plan. Not long later, Allistaire and I are at the ER to get blood drawn for blood cultures to look for infection and to get a dose of the antibiotic Rocephin. Because it was impossible to draw blood from her now defunct line, she had to have blood drawn from her arm. I circled my body around her, legs entwined over her legs and arms holding down her arms and she screamed with face bright red, quick streams of tears and entire body flexing in absolute protest. A little later, once that terror had passed, I pulled down her jammies to expose her upper thighs and the nurses came in coordinated assault, plunging the matching needles into her legs, administering the dose of antibiotic, and again the terror and tears and the circling her body in hug.
Yes, her mom was with her, but terror still struck and not just once, and she was not okay with it. And like the Lord with John the Baptist, I could have stopped those points of sharp metal from stinging into her sweet flesh, but I didn’t. The love of the Lord does not preclude us from overwhelming sadness and loss just as my love for Allistaire will sometimes result in me not protecting her from the harm that she is demanding and screaming she doesn’t want. And this is why it is terrifying to say yes and amen to the Lord. This is why the Lord is not the sort of refuge I want Him to be. I want to make God into the image I want Him to fit. But He will not be constrained by me. And even as I scream and shake in fear that no Lord, NO NO NO – Don’t take my child! Don’t force us back into that place of relapse and daily fight for life! Give me the life I WANT!!!! He encircles me. He speaks words of reassurance to me and says, “It will be okay.”
Somehow, I am starting to believe Him. At an imperceptibly slow rate, I am releasing my life and the words, yes and amen, come a little quicker. And it is starting to feel a little more okay. I see that Tuesday evening, and even that Monday morning with results from her CT scan, and I can easily imagine my greatest fears crystallizing into reality once again. And I can see my hopes for the days ahead, slipping away again into blackness of night. And I am nestling in a bit more into the reassurance that all the days ordained for me were written in His book before one of them came to be. More and more I am lifting my eyes, degree by degree to see that in the long view, it will be okay. In the mean time, I may be shoved out into a small boat on a stormy sea by Jesus Himself. He that makes the storm and can quiet the storm are the same God, a dangerous, wild, beautiful, utterly-other God, that calls me to trust, to say Yes and to know that even if the worst comes to fruition – even if like John whose head was severed from His body or like Stephen whose body was pummeled with stones, though my flesh, it be destroyed, yet with my eyes I shall see God. Slowly He is lifting the veil and allowing me to see that the only thing that matters in this life is to say Yes to Him, to yield my life to Him and to know that in its simplest, most fundamental form, this life is about knowing God and making Him known. It is His to determine how this will be manifest in my one little life and who I am to say what means are best? So I hold much more loosely the plans that I have for myself, and not just because I am forced by circumstance to do so, but now too, because I long to, I delight to.
Beware what songs you sing in church or to yourself as you listen running or in the car. Beware what you say you are agreeing to with this God. He is asking for everything, and that’s the thing – I know He’s not done with me. He’s persistent and He wants more of me. More and more He wants sovereignty over the terrain of this life of mine. As another Tuesday, and thus another set of labs, draws near, the sour taste of fearful relapse begins to rise, and even if this Tuesday is fine, what of the next set of test results the week following or the next month or the next? I even fear His gracious sanctifying of my heart because it may signal His preparing me for harder days ahead. But I thank Him for all that He has done, even for the scars that have disfugured because against all rational argument and by mysterious means, these knives to the gut, these ravaging have left me broken but more alive. I am mysteriously fragile and gloriously resilient at the same moment. These wounds have been bound by the Lord, binding me more and more to Him and I am tasting life.
Yes and Amen Lord, yes and amen. Hear this child, with weak voice, saying yes to You, yes to anything You ask of me, yes to everything You have planned. Yes and Amen sweet, wild Lord.
Wow, I really needed to hear this today. After years of infertility I just lost (and had to deliver) my twins at 18 and then 21 weeks-they were perfectly healthy but I just found out I have an incompent cervix. This pain is so where near what you guys are facing each day-but I am still so heartbroken and so sad. Recently I’ve been feeling angry. Where was God as we cried out for a miracle? All my life I’ve been a Chrisitian and loved and trusted Him-he felt so far-it felts so cruel-unfair. I felt like he left me. As we come on the 8 weeks of loss, I’m starting to feel angry. But your words have slapped me back into reality that God is God. We cannot make Him what we want. The Matt Redman song was convicting. Thank you for your honestly, your faith, and your amazing attitude that shines through each post. ❤ Your family is beautiful. And you little sweetheart, her words "as long as you are there with me mommy" that ministers to me too. The childlike faith that He so longs for us to have in Him. Thank you to you both.
Your photos are so precious….Both of your girls are beautiful….Allistaire is so blessed to have her big sister! (and you and Sten and all the fam of course!)
I love you Jai. your girls are just beautiful. Thank you for your faith and your willingness to accept whatever God has for you. God is good! We will continue to pray for your sweet family.
My suffering seems hard to me but I know yours is so much harder, your words made me realize I want my life and its so hard when you realize, that God’s plan for me is not easy, normal or what I want — I only met you once but do pray often for your family and this tragedy you live. People tell me I live in chronic pain etc and God knows and loves me but sometimes that doesn’t help like it should, so I need to try harder to realize God is holding me but its hard………..praying God will heal Allistaire and you can have an easier life………..I understand a little I admit because I hear people with normal lives tell me they understand, I don’t think you can until you live it
Praying grace regnier
As I read and reread your post tears flooded my eyes, What faith what honesty, Thank you for sharing your heart with me.
Dearest Jai . . . I was living the lesson last week as Leslie was in a bad car accident. By God’s grace she was spared. But one of my immediate thoughts as we drove to the hospital was – here Jai and Pam are struggling day after day with the pain of potentially losing their children and the reality is any of us could lose ours to someone driving too fast on icy roads. So many storms – ones that we can sort of forecast and ones that come out of the blue. And then the story this week in Matt 15 where the Gentile woman is begging for her child. Hard truth is still truth. And among all the promises God gives us of his unending presence and love is the PROMISE of trouble here on this earth. My favorite hymn is always more prayer than proclamation – “Turn your eyes upon Jesus and the things of earth will grow strangely dim”. Unfortunately the things of earth are more often blinding. Hoping to see you this Wednesday. Love, hugs and prayers from a fellow mom
Your description of remission is one of the most accurate I have ever read. ” Remission is fickle. It is the thinnest crust of ice on a winter lake. ” When my son James was diagnosed, the longest remission for any child had been 36 months. Most kids got remission but it never lasted. When we left treatment, I was told we would likely be back. I tried to live life to the fullest but there was this horribly oppressive weight on my heart. It ate at my soul and stole my joy. It dragged me into an abyss of grief about the future, or lack thereof. I regret every second it invaded my thoughts and made me sad. Prayer brought peace. Sometimes it was a struggle and I prayed as tears streamed down my face, begging for no relapse and asking Him to push away the fear. I pray you feel His love and that you experience His peace. I pray you give Him your yoke and take on His. I pray you know His heart is for healing. Jer 29:11
I agree with what you said, “…death will never be okay.” Soon after 9/11, I was reminded to what lenghts God hated death…Enough to send His one and only Son to make a way for redemption. Your call to follow God with total abandon is right on the mark. I am sorry for the many times I wanted to ignore Romans 11 and be God’s counselor. I am sorry to say it comes naturally when my tiny human mind cannot make sense of what is happening. Thanks for the reminder that God is in control and I am not.
We will continue to hold Allistaire in our hearts and in our prayers. May God be glorified! Praying 3rd John 3 for her that she may prosper in all things and be in health.
Jai, thank you so much for sharing your heart again. I have been thinking about you guys so much! You are so very often in my thoughts and prayers. It pains me to read of your on-going anguish…living with the constant unknown sounds so very brutal. Our pastor talked today about being consumsed with the things of God. How we should view things in the light of eternity not just in light of what’s before our face. I can’t imagine a harder situation to do that in than yours yet I see you pushing in to do just that. Your faith/pursuit of God in the midst of unfathamable pain so inspires me Jai…it’s what I attempt to do in my different but undesirable situation. Sending my love and hugs to you precious lady!
When I told Allistaire that her sickness might be back and that we might have to move back to Seattle she said, “but that’s okay, you’ll be with me mommy.” Oh how I wish I could respond to the Lord in the same way, “you’ll be with me Father, and that will make it okay.”
I’ve also been hoping to respond this way in my own anxieties. Nothing I’m facing in my life compares in any way to the horrors you have to face, but I also wish I could have immense confidence in God’s enduring presence.
Hoping and praying for a healthy test result.
Oh, how my heart breaks for you, for the pain of watching your child go through this, and the ficklesness of remission. But your post is shrouded in glory. Your anguish and surrender to God’s will touches my heart to the core.
This is reality. “Slowly He is lifting the veil and allowing me to see that the only thing that matters in this life is to say Yes to Him, to yield my life to Him and to know that in its simplest, most fundamental form, this life is about knowing God and making Him known. It is His to determine how this will be manifest in my one little life and who I am to say what means are best? ”
God bless you. My prayers are with you, Allistaire, and your family.