Sunlight filtered through leaves, ripples like waves reflecting sun. The wall undulates with shadow and bright. It calms me. The leaves ruffle and quiver. The trunk and branches moved by wind, light skipping. I am exhausted. Wildly furious, my insides quiver with the unceasing energy of trees in storm. Guts and sinew under absolute force being torn from the inside out. Unrelenting pressure and I push back and back and scream silent rage. Every where I turn I fight, I fight. I beat my fists and my face strains hot. I oscillate between rampage and surreal calm, but both are fight, both are the jaw set tight, teeth clamped down. The slightest touch can unload the spring of fury, so great is the tension set. No provocation is necessary. Just outright explosion of human force and raw, unfiltered, gut splattering emotion of terror, sorrow, anger, fear. Deep bruises of seeping sadness, so tender and vulnerable I just bleed and bleed. I wrap tight my thread bare facade of okay-ness to keep from falling over, to keep my feet moving forward. And all the while I know I am ridiculous and all this fury and energy circling round like the darkest tornado, ravaging as it goes when He just keeps holding out His hand. He keeps entreating. He keeps inviting. And round I go, shoving and kicking, keeping Him in the corner of my eye.
Every single day I battle Allistaire to eat. I set the timer for five minutes and check her progress. I am flabbergasted that she is still chewing the same utterly masticated, obliterated bite, seemingly incapable of swallowing. Eat Allistaire, Eat! And I check the clock and 50 minutes have passed and the plate looks the same and I set the timer again and threaten again. Do you want a tube up your nose? “We’re a team,” I yell; as though she knows what a team is. You have to put the food in your mouth! Meds are already 30 minutes late. Another poopy diaper, a rank pool of diarrhea and the fifth since the morning began and I question myself over whether I should call the nurse. They will probably want to scope her to see if it’s GVHD and that means more predisone and that means more immune suppression and that means less offense against that cancer, whom I despise, and that means my girl dies and that means I have to figure out how to live my life without my child and ravaged by God, and I rage and scream and beat my fist on the freezer door. I collapse in the chair and I hate myself and I hate cancer and am furious at God and round and round I rage. And He extends His hand to me and I keep Him in the corner of my eye.
The light is eight inches more to the right and the sun slowly lowers. I rarely open the blinds anymore, preferring to stay cocooned in this enclosed space. We haven’t taken a walk in weeks. I haven’t been to church in months and the walls close me in, protecting and isolating. We languish in this chemo cycle, round and round, with no end-point, just circling. Since the time of my late childhood, when I had somehow come to know, as with a sense rather than thought or fact, that life sometimes hands over tragedy, I have prayed upon the first star of the night, that should disaster strike, that God would hold me close, that He would keep me from denying Him. And night after night, I search the twilight with a frenzy no one else sees for that first star. And I repeat my mantra and I ask to be held in by Him. No matter what comes, Lord, help me to never turn away from You.
The tempo of the music rises, the fist constricts and the squeeze won’t let up and I run and run and pound my feet. My tendency toward perfectionism, manic to every detail, every dose, every diaper, every color of skin, every hour of sleep, every gripping of tummy, every appointment, every procedure, every clinical trial, every, every, every. With all the strength of my arms and fingers I press away at the cancer and throw my body weight around to knock it away. I push and exert my 38 years and parental authority to get Allistaire to eat and I draw up the vigor of my mind to understand, to ask the right questions. All my human strength and skill is called up to service in this all out war. And it is not enough. It is not enough. I am exhausted and ashamed at my ineptitude. And I stare flat eyed in the mirror, face laid bare and sick taste of rank sin in my mouth. Shame for the yelling. I am desperate for my love for her to make sinning against her impossible. Surely I love her too much to take out my frustration on her. Surely I love this girl too much for cancer to come slinking back and take her away. My voice is raw from yelling at God to show up. Okay You’re right, You’re right. I can’t do this! I am too frail, too weak, too finite. My exertions are insufficient. And there is His hand and He invites me to walk out onto the water, to trust Him, to be with Him. But I look at the water. It is dark water. It is vast and deep and dangerous and I am wild with fear and wild with anger that He should call me to walk out on that!
All I ever wanted was to decorate my beautiful house and plan my nutritious meals and put together fun festivities for my family and learn to cross-country ski and fit into size 6 and be cute and have my husband love me and be kind to people and help where I can. I sponsor my two girls from Ethiopia who have not heard a word from me in nearly two years. But it’s not true. I’ve always, always wanted more than that. As a third grader I wrote that when I grew up I wanted to go to Africa and dance with a monkey and tell people about God and I was utterly sincere, about both of those. And I wanted to be a doctor so that I might be like Christ and care for people’s tangible, physical needs as the first step in sharing His ultimate love. And I chose to be a social worker because I wanted to take whatever privileges of mind and resources and upbringing I might have to be brought to bear on behalf of those so dear, so precious to the heart of God: the sick, the poor, the orphan, the widow. And I still want to have clothes that are hip and a body I’m not embarrassed of and big, tasty dinner parties and a vacation now and then and to volunteer in my daughter’s class. I’ve taken these gifts of mind and resource and I pulled out the map and plotted my course and then planned to implement my steps. And my God, whom I love with every cell in my being, came and ripped that sheet of paper to shreds and confused the whole picture and showed me and shows me over and over my finiteness and turns my face to His vastness, to His incomprehensibleness, to His utter otherness and He blurs my view and I can’t see the way forward and He extends His arm and He doesn’t tire and I rage and rage that this cancer must end and I want my life back and Yes, God, YES YES YES I DO want what you have for me! I do! I want to go running into your arms and I never want to leave and I want to turn my eyes away from those tattered pieces and I just want to rest in You. Oh how I am spent. I just want to collapse and turn my back to all my plans and all my sin and all of my insufficiencies and I want to keep my eyes fixed on you. I am hungry to worship You Father. I am so thirsty to drink of You and be replenished. I thirst to know You.
It is a day later and the flurry of emotion has dampened. But is still there, smoldering, just under the surface and really can break through at any moment. It doesn’t take much. I am clearly outright, raging mad. I want to say that I’m not mad at God because it seems crazy to be so furious with one you hold so dear. But now that I say it, you know, the people I love the most on the planet have incited the greatest angst I have ever known. Maybe I really am mad at God. I guess I question whether that’s it because somehow being raging pissed off at God seems like the antithesis of faith in God. But I’m not sure about that. I mean, I think they are connected because I can imagine myself so utterly trusting in God that I just sort of float along with this whole thing. That’s how I want it to be. I want to be just serene, calm, exuding grace and patience and love. Instead I disgust myself as I watch myself spit words of rage at Allistaire. I flee the bathroom at SCCA when the 800th sweet old lady wants to ask about Allistaire and proclaims that she’s going to be fine. I want to scream back, “Why? Why is she going to be fine? Because she’s a little kid and she’s cute and wearing pink cowgirl boots? You think she’s somehow immune to that brutal disease that is stalking your life too?” What am I doing? What am I so worked up about? Damn it, I think I just want to be in control. That old lady makes it sound so easy, but man, I try, I try so freaking hard I’m surprised the tendons in my neck haven’t snapped. And no matter how much effort I put into this, no matter how much I am saturated in my desire for her to be well, I really just have almost nothing to do with the outcome. And it’s all linked together: her life, my life, they’re all intertwined. There’s no compartmentalizing. And I want it all, all of it, her, what her in life looks like. And I’m furious and I’m terrified because I don’t want to give up what I want. The details of what it tangibly means to fight cancer are perfectly clear to me. The possibility of her loss and the ripple effect of sorrow and a big hole in our lives is quite imaginable.
And so I turn with fury in my eyes when I face God. What? What do You have to offer me? Huh? You take away this and you take away that and you gouge my heart and slash my flesh and you offer me…what? And there was the silent perfect moment in Dostoyevsky’s, The Grand Inquisitor, when the Inquisitor has stalled in his rampage against Christ and he finally quiets but is seething in demands for Christ to answer him. And what does Christ do? He kisses him. He answer’s that raging, arrogant man’s accusations and demands and questions, with a kiss.
“When the Inquisitor ceased speaking he waited some time for his Prisoner to answer him. His silence weighed down upon him. He saw that the Prisoner had listened intently all the time, looking gently in his face and evidently not wishing to reply. The old man longed for him to say something, however bitter and terrible. But He suddenly approached the old man in silence and softly kissed him on his bloodless aged lips. That was all his answer.”
And it seems this is the way it is with the Lord. I stomp around in a huff and shake with fear and feel buried in sorrow and what does He do? He extends His arm and offers embrace. He does not paint for me a picture of what the days ahead will be. He doesn’t tell me how long this will go on or what the outcome will be or if I’ll have to come to know what it is to take my child home to die. He doesn’t answer me as I want. Instead, He asks me to walk out onto the waters, into a future unknown, with no guarantee of anything and no means of security except Himself. And I downright, absolutely hate it. Because I am fleshly, because I am earthly, because I am finite and broken and small and nearly blind. But there is too, that light in my gut, not of fury and wrath, but of desire, of fundamental, to-my-core, penetrating every fiber, longing to accept His offer. There is the yearning so keen it casts down hot tears, and I want to say, Yes, Father, there is nothing I want more than You and I ache to be at rest knowing that You are all that this life is about. Everything, everything matters, but only because it is all wrapped up in You. And I choose to step out into the realm of mystery where there is no path for my earthly eyes to see. I choose to stake my life on Your claim, that YOU, You, yourself are THE WAY! There is no path. There is no American Dream to be fulfilled. There is no laid out ten point plan. I am in YOU and that is all that matters. Because of Christ on the cross I am invited in and kept in and delighted in.
I don’t know this man, Britt Merrick, but I hope to talk with him one day. He has walked a similar journey, but is ahead of me. My friend suggested I listen to his sermon from this past spring, entitled, “When Sparrows Fall.” (You can find it in iTunes) I cried. I heaved and sobbed as I listened. I know that the whole of scripture is true and I know that this life is SO much more than what the surface reveals. I know, as much as I know anything at all, that I love the Lord my God and I want to learn from Him what it is to live this life IN Him. But I’m all tangled up you see, in this earthly battle for the flesh of my child, in this battle of my fleshly heart so bound to this earth. But bit by bit, He is grasping onto me more. I know from times past, when I was drowning in my sin and I despised His name, He does not let go of His children. I have been bought, redeemed by the blood of this Christ whom I am growing to love more and more. I have as a deposit, the Spirit of God, dwelling in this broken down temple of my flesh. You fill me Lord, You give me the ability, the strength, the grace to take each step forward. Lord be with me, be with me.
You are exhausted. Rest in the lap of Jesus and feel his arms around you, holding you so close. My heart and prayers are with you dear sister. I will pray in the middle of the night, the morning and day through out. YOU ARE LOVED.
No words, Jai. Praying…Thankful for your real, honest struggle.
“Blessed are the poor in spirit, for theirs is the kingdom of heaven.” Thanks for sharing your heart. Praying for you and your family.
praying for you…
ANSWERED ‘by’ Sheila Dean (2007)
Although it sometimes seems
that my prayers are answered only
“in my dreams”-
I rest assured that the TRUTH in your Word
is never failing!
You say, “Dear one, I know that you must wonder why,
so be secure in knowing that it’s no sin to try
to comprehend my ways.
Know that as you live each of your days,
you may treat yourself to the
peace you’ll find-
not in the answers of mankind-
but in the trust you place
in my incomprehensible GRACE!“
Dear Sister, You said in this post the He doesn’t always answer you the way you want.. I feel deeply for you as you have stated this.. Tears are streaming down my cheeks as I send this to you. He only wants us all to KNOW what you state so well over and over again.. HE is near and dear and some day we will rest in his presence ..(I CAN ONLY IMAGINE…) Until then, be blessed by knowing of ALL the prayers lifting you and yours up to HIS WONDROUS THRONE OF GRACE… Because He Loves Us, Sheila Dean of Brermerton
I am at a loss as how to reply to this post, Just know that you are Loved by many and prayed for each and every day by many.
Hugs and much love
Don’t forget to breathe, Jai. You are doing an outstanding job. If there is one thing I have learned through your blog it is that time is valuable. Praying for you.
From the mountain top trip home to Bozeman to the depths of cancer and possible death of Allistaire, God is faithful and has promised to keep us from sinking if we take His hand! 2 Corinthians 4:7-18 speaks of these Jars of clay we have but we do not lose heart becasue we have looked God directly in His face and remain fixed there. You are much loved and our Father and your father doesn’t want you to dspaire. Satan desires to capture our mind and emotionts to draw us away for God. “So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Cor. 4:18
Dear Jai and Allistaire,
Sharing with us your thoughts from the depths of your heart provides the opportunity to walk along beside you and pray for you from the depths of our hearts. I am continuing to pray for both of you and all those involved in your lives. In His love and care, Bethel
Jai, I am constantly humbled and challenged by your honesty/vulnerability in your posts, your perspective, this battle that you and your family are fighting every day. I am reading constantly, praying for you all constantly…
I hear you sister. And I am praying for you and your family. I’m so glad you got to go home for a bit. I know you could use a lot longer. It’s hard when you’re surrounded by this – day in and day out – your mind and everything you do revolves around fighting this cancer and caring for your precious little one, trying to enjoy every moment with her, but you’re exhausted, you’re weak (as we all are and need to realize so we can truly depend on God for the strength), you are human. I love your honesty- and I think it’s what we all do with whatever we are holding on to – our dreams, the way we thought it should go- and God calls us to take that step of faith – out onto the waves, sustained by Him, not as sure of footing as we think compared to these physical, tangible things we’d rather set our hope and faith in. But I KNOW He is actually MORE real and MORE satisfying than all these things that I for some reason struggle to give up… God actually just used that verse to speak to me recently- causing me to think about what waves I’m looking at that take my eyes off of Him (Peter was able to walk on the water as long as his eyes were on Jesus), and He reminded me to set my hope FULLY on the grace that is to be revealed, and to fix my eyes on Jesus, who has gone before me in giving up His will. I was encouraged to see that even Jesus (aka God) was “greatly troubled” in His spirit at that point but of course knew that is what He must do- that is the reason He came to that moment- to fulfill God’s will, as are we as we come to those places- and as we walk forward in faith, dying to ourselves, our plan, our will, He is glorified, and through our death, more life is brought about. I rage inside too over much lesser things. He IS carrying you. Praise God He has helped you to see the Truth so clearly and even inside yourself and what you’re struggling to give up so clearly so you know exactly what you need and you know His still, quiet voice that is calling you, the kindness in His eyes as He carries you, that you keep falling, exhausted in His arms. I’ll keep praying for you. ~ Kara
Your faith – brutal, honest, searching for God faith – inspires me. I am on a dark journey of my own to trust in God when what He is doing in my family makes no sense to me. I found this sermon online that has been a great comfort to me and hope it will be to you. It is a message from a Dad whose little 8 year old girl was struggling with cancer. In case my link does not work, the sermon is called “When sparrows fall” by Britt Merrick.
Thank you for sharing the raw and vulnerable side-by-side with faith-filled trust in the Lord. Your heartfelt cries of despair and hope tug at my heart and soul affecting me in ways I’ll never understand. God bless all of you on your journey into the unknown.
I did listen to Britt Merrick’s sermon – how beautiful is his sharing of his faith!