Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat. I feel I can’t breathe. I hold back tears more times than I can count. I’ve felt frantic, in shock. She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.
Her BNP today is 4300. I don’t know why. “Heart Failure,” is all I hear now. It supersedes everything else. Her echo was terribly bad on Monday. Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin. They tear and burn and with all my flesh I despise them! I hate them with violence and I want to tear them to shreds. I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO! You CANNOT be. You are not allowed here. You are forbid to bind yourselves to my child!
I’ve been trying to get her to eat. Ten bites of chicken noodle soup was the goal for the first half of the day. Three bites of apple sauce. So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.” I strain to find some other cause, some other plausible explanation. And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero. Sunday it was 30, then 93, 75 and today 172. Her belly pain has increased substantially with pretty consistent pain throughout the day. My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut. This causes the pain and “worse before better,” just like the infusions of granulocytes did. There is a lot of evidence too that she is having substantial pain related to anticipating pain. This ICU stay has terrified Allistaire like nothing I have ever seen. It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear. She has experienced so much physical pain and she feels she can trust no one not to hurt her. Oh it hurts my heart, it hurts, it hurts. So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.
I have long sought to yield Allistaire to the Lord, to lay her down at His feet. By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me. While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses. But oh, how it hurts so bad. Suffering and loss are not some abstract yielding. It hurts down to my fingertips, they ache with blood saturated with pain. My flesh throbs with the deep, deep sadness of loss present and anticipated. In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes. I walk, I walk, intimately aware of every detail.
Yesterday morning I sought to be still before the Lord and wait patiently for Him. The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide. I see our doctor walking down the hall before me, whistling. For him, he knows we are doing all we can and in that satisfaction he can rest. But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough. It is not satisfying to me. I want Allistaire to live! It is hard for anything less to ever feel like enough. I went home to Montana this past weekend and it was good. It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life. Oh how I long with desperation for ordinary life. A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves. It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort. I cannot get that blue bucket out of my vision. We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be. I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live. Those memories precious, feel like distant, far off lands you wonder if they are truly real.
Yesterday morning I sought to be still before the Lord and wait patiently for Him. I rose early to exercise, shower and eat breakfast. As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad. They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant. They have been given a room there because this sweet girl is now on Hospice. Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant. I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her. Nothing left. They must give into that beast. And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath. I looked upon cancer and its devastation as I went to get breakfast. My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.
I’ve always known it could come to this. But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom. I weary of numbers that slice. The thing is, I know the Lord will be with me. I know that He will hold me up as He does today. It seems too awful to endure and if so, that means I won’t have to endure it will I? No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure. But why, why must this be? What is the point?
A friend of mine whose son died recently fears that her son’s death was punishment from God. How I long to offer her words of life that would take away this overwhelming burden. I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned. Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life. What sort of exchange is this? Why this wretched suffering so God can get glory? Does He really need more glory? My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole. But this is not the end point, His glory is not His aim. His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life. He seeks glory that we might know His love, for that is His ultimate glory, His great love. He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers. He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.
Why must Allistaire suffer? Why must I? In my finite view with my finite heart I can only guess and grab at a handful of small reasons. But what if it is for my friend? What if in my brokenness she can see the hand of God extended? What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life. It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible. Who am I to liken myself to Christ? What is my life? It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him. Shall I suffer? How shall I live out each of these days that seem to cut and gouge relentlessly? I walk, nay, I am carried by Him. I now rejoice in the dependence in Him I once reviled. I know not the days ahead, I even dread the hours that will bring by the cardiologists. I don’t know how to let go of this fight. I don’t think I shall until there is nothing left, nothing left.
Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me. Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you. Spirit of God, help me to be still and wait patiently for you.
Here is a link to sermon by John Piper about the blind man.